SLOW AND EASY: The caregiver's journey with people who have Parkinson's Disease

Common Sense Caregiving -- a book for distraught families dealing with mental impairment

2010-12-05T02:27:00.000-05:00

I have just received a book by columnist Gary Joseph LeBlanc that documents his 3,000-plus days as the primary caregiver for his father, who had Alzheimer's. It's a common-sense approach to caregiving he calls, STAYING AFLOAT IN A SEA OF FORGETFULNESS. Gary's father died of Alzheimer's, but other diseases such as Parkinson's also involve memory impairment and behavioral problems that test the most patient loving caregivers. He says, "When caregivers are looking for help, the last thing they need is medical text so complex they already forget what they read by the time it's laid back down."

You won't have this problem with Gary's book. The chapters are short; the text, in large-size font, and the language, caregiver-friendly.

Gary originally wrote a column for his local newspaper about the daily ups and downs in taking care of his father. He chose 65 of those articles to form his step-by-step book to help others who are companions of those entering into the "murky waters" of mental impairment and a debilitating disease. His goal was to make this book an easy read. He does that, but he also adds layers of insight, empathy and wisdom from recognizing that point when a caregiver becomes burned out and needs respite to describing the ongoing grieving process that begins as the loved one "whittles away to a twig" until actual death and thereafter.

All through the book Gary inserts associated poems and pearls of wisdom. One is by Gary himself: Have you ever been cruising through your day when you suddenly hear lyrics from a song that stick with you for awhile? Well, this Beatle song came on the radio and I heard them singing, 'I get by with a little help from my friends.' It got me thinking; through a campaign of caregiving, you need to always be grateful for all the little things people do to try to help.

You can order your own copy of the book from http://www.stayingafloatbook.com/ or at Amazon, Barnes and Noble and other major online booksellers.

Caregivers' Dilemma by Advocate Carmel Boosamra

2010-12-02T14:32:00.000-05:00

I have just received the December 2010 issue of e-ParkinsonPost, and this month there are excellent articles for everyone. I am linking you to the entire issue so please read every article through to the end, particularly those on deep brain stimulation, new research and proposals for new government support for patients and caregivers of people with Parkinson's. Here, however, I am reposting the specific article written by caregiver by Carmel Boosamra. Carmel thought she had read everything she needed to know to assist her husband Frank on his journey with Parkinson’s but she didn’t know the half of it. “I hadn’t even scratched the surface,” she says, recalling some of the challenges. BONNIE

Here are the things that impacted her caregiving -- eParkinsonPost, published December 2, 2010:
Economic impact. Frank had to sell his business. He had been a pioneer in supplying and installing solar control window film in the Ottawa area. “Having him lose his source of income was pretty traumatic for both of us.”
Loss of driver’s licence. When the doctor notified the Ministry of Transportation that Frank should no longer drive because of muscle rigidity and some cognitive decline, “that had a bigger impact on Frank psychologically than anything else. Whenever anyone asked him what was the worst thing about dealing with Parkinson’s, he would say, ‘losing my driver’s licence’.” (I was the one who had to take away my husband's driver's licence because the doctors didn't. I was angry the neither the neurologist nor family doctor took responsibility to do it. BONNIE)
Co-existing health problems. Frank had heart bypass surgery 10 years before he was diagnosed with Parkinson’s in 1992, at age 52. He also had insulin-dependent diabetes and, in 1999, required surgery to amputate his foot. “The anaesthetic played havoc with his Parkinson’s.”
Medication management in the hospital. “There was a big problem trying to get the meds on time every time Frank was hospitalized.” Carmel recalls being stunned when a medical resident asked her how long her husband had been having psychotic episodes. The incident spurred her determination to educate and advocate on behalf of people with Parkinson’s. “During all the hospital stays, getting medication on time was a constant battle with the medical staff.” (I have experienced the same thing except for one occasion. BONNIE)
Medication management at home. “As the Parkinson’s medications were no longer effective, the neurologist kept trying different drugs to see what worked best but Frank would get severe hallucinations which I found very frightening. The neurologist was a great asset to me because he took the time to help me understand what was going on. At one point, Frank was on three different types of drugs but eventually it came down to one.”
Safety concerns. “Frank was home alone while I was at work. He was falling all the time and he was hallucinating. I never knew what to expect when I came through the door at the end of my day. One time I came home and found everything removed from the china cabinet and packed away in boxes. Frank was cooking in the kitchen and something was burning in the oven but he didn’t realize it. He was in his own little world and he was paranoid that someone was coming to take everything away. It was then that I decided this isn’t good. We need to find a solution. Luckily, we had been receiving home care for three years, so they were ready to place Frank into a care facility as soon as I called them. ”
Power of attorney. “Power of attorney was something that we both discussed and planned. We arranged it while Frank was fully capable of making that decision, which made the whole process easier for me emotionally. We set up a power of attorney for finances/property and a power of attorney for personal/healthcare decisions. I highly recommend these legal avenues. Some people may feel it means giving up their legal rights or voice but it doesn’t have to be, as it is not used all the time but is available when needed.”
Planning ahead for future care. “From the start, Frank was realistic and practical when it came to his care and future needs. We had visited care facilities and decided together which one we wanted him to go to. When it was time to move, we didn’t get his choice at first, but we eventually got the one we wanted.”
Dealing with symptoms of advanced Parkinson’s. “The saddest day for me was the day we went to see his neurologist and the neurologist told me that Frank had Lewy body dementia, which can happen in late-stage Parkinson’s. That was in fall 2007. From that point on, Frank just faded completely. I could see that he wanted to say something to me but he couldn’t get the words out; his cognitive ability wouldn’t allow him to form the words. As a partner and as a caregiver, it was tough knowing he had lost that ability to communicate verbally. After a time, I got used to it. He communicated to me through his eyes. I could tell what he wanted to say just by the look in his eyes.”
Scarcity of information. “I wish I had known more about Lewy body disease. It was there long before it was diagnosed but I had no information to help me understand it. There was no resource available to tell me about advanced Parkinson’s, such as what to look for when someone starts having swallowing problems. I watched these things happen gradually to Frank but I think I would have accepted it better if had some knowledge about it.”
The toughest issue. “The loss of the person. In the last year of Frank’s life, I went to see him every day and held his hand. Our relationship was now simply holding hands. It was very sad. It’s human instinct to just persevere when you’re faced with circumstances like that with the person you love but I don’t know how I got through that.” Frank Boosamra died in July 2008. (It is an ongoing grieving process every time you see your loved one, and continual grief wears the caregiver down--emotonally, spiritually and physically. When it lasts longer than one year -- for some they even make it through four years of loyal attendance, but there comes a time when caregivers in this situation have to start making decisions to preserve their own health and sanity. BONNIE)

Asked if there is anything she would do differently, Carmel says, “I did everything that was humanly possible, as a caregiver advocating for Frank, making sure we got home care when they wanted to reduce the hours, advocating with the doctors and nurses in the hospital to ensure he got his medication on time. My advice to anybody who is caring for someone with late-stage Parkinson’s is to keep advocating for them and treat each moment you share with your loved one as a precious time.”

Carmel currently serves on Parkinson Society Ottawa’s board of directors and is a member of the Ontario Advocacy Committee. She says, “Because I experienced and saw the misunderstanding and lack of knowledge about Parkinson’s that’s out there in the general public and in our government policymakers, I feel it’s a public service, on my part, to become involved and do something about that.”

TO READ THE FULL DECEMBER 2010 ISSUE OF EPARKINSONPOST, GO TO:
http://parkinsonpost.com/2010/12/

UF-developed device may reduce swallowing health risk in patients with Parkinson’s disease

2010-11-23T12:44:00.000-05:00

from the University of Florida News, National Parkinson Foundation 11/22/2010
Thanks to Rob Bristol for bringing this to my attention.

The University of Florida, home to one of the NPF Centers of Excellence, has developed a hand-held device that strengthens the muscles involved in swallowing (a serious symptom of Parkinson’s disease) to reduce the swallowing health risk in Parkinson's disease patients, according to a new University of Florida study.

In what researchers believe is the largest randomized trial of a behavioral swallowing treatment in patients with Parkinson’s disease, scientists found that about one-third of the volunteers who used the device improved their ability to swallow. The findings appear in the Nov. 23 issue of the journal Neurology, the medical journal of the American Academy of Neurology.

Nearly 1 million Americans have Parkinson’s disease, according to the Parkinson’s Disease Foundation. Finding solutions to their swallowing problems is important because their most common cause of death is pneumonia caused by inhaling foreign material, such as food, during swallowing.

“The many muscles involved in swallowing progressively weaken in patients with Parkinson’s disease and become uncoordinated in the same way that patients lose coordination and strength in their arms and legs,” said Michelle Troche, the study’s lead investigator and a clinical lecturer and speech pathologist in the UF College of Public Health and Health Professions’ department of speech, language and hearing sciences.

It also becomes more difficult for patients to sense material in their airways and cough hard enough to expel it, she said.

For the study, researchers trained participants with Parkinson’s disease to exhale into an Expiratory Muscle Strength Training, or EMST, device. In previous studies, EMST has improved swallowing and cough function in patients with multiple sclerosis and in elderly, sedentary adults.

"EMST uses the basic exercise theory behind any strength training program,” said co-investigator Christine Sapienza, a professor and chairwoman of the department of speech, language and hearing sciences. “This small device capitalizes on that concept of overload with a calibrated pressure release valve that won’t open until you generate a great enough lung pressure. The patient or clinician can vary how much pressure is needed to open the valve on the device. The greater the pressure you need, the stronger the muscles have to be. It acts much like a pin on a weight machine and uses the same concept to strengthen the muscles involved in swallowing and breathing.”

Sapienza developed the device along with UF researchers Paul Davenport, a professor and interim chairman of the department of physiological sciences in the College of Veterinary Medicine, and A. Daniel Martin, a professor in the department of physical therapy.

“Their efforts are pioneering and it is likely that this study will stand the test of time as a landmark in Parkinson’s disease swallowing research,” said research collaborator Dr. Michael Okun, a co-director of UF’s Movement Disorders Center and an associate professor of neurology with the College of Medicine and UF’s McKnight Brain Institute.

Participants in the Parkinson’s disease study were divided into two groups of 30. In one group participants used the EMST device with proper calibration. The other participants used a device that looked exactly the same but did not work to strengthen the muscles. Neither the participants nor the study therapists knew who had the real device and who had the sham device. Participants used the devices in their homes for 20 minutes a day, five days a week for four weeks. Therapists visited once a week to make sure participants used the device correctly. Following the study period, participants in the sham group received the EMST treatment.

The researchers measured participants’ swallowing function before and after treatment with a standardized swallow safety scale, the Penetration-Aspiration scale, developed in part by UF faculty member John Rosenbek, also with the department of speech, language and hearing sciences. Researchers used videofluoroscopy to obtain motion X-ray images of the participants’ swallowing muscles as they swallowed liquid.

One-third of participants who used the device with calibration had significantly improved swallow safety scores compared to 14 percent of the participants in the sham group. The researchers also found that for patients in the treatment group, there was greater movement in the muscles that lift the voice box out of the way during swallowing. Quality-of-life measures related to swallowing improved in both the treatment and sham groups.

“The fact that EMST is a home-based treatment is of particular importance as many individuals with Parkinson’s disease cannot travel the long distance to attend clinic or hospital therapy sessions,” said Stephanie Daniels, a visiting associate professor at the University of Houston and an assistant professor at Baylor College of Medicine, who was not involved in the study. “Very few swallowing treatment studies have incorporated the rigorous research design used in this study. We need more studies such as this to support the different treatment approaches used in swallowing rehabilitation.”

Sapienza has a potential financial interest in Aspire Products LLC, the manufacturer of EMST. Portions of the study were funded by the Veterans Affairs Rehabilitation Research and Development, the Michael J. Fox Foundation and the National Institutes of Health. The UF Movement Disorders Center receives support from the National Parkinson Foundation Center of Excellence.

© University of Florida

DEPRESSION & ANXIETY DISORER

2010-07-06T17:01:00.000-04:00

In writing this blog over the past few months, I have mentioned how Wally occasionally becomes quite anxious over what seems to be quite simple events, especially in the early stages, and how unusual this has been for him when you consider the man was Mr. Slow and Easy himself. This video created by a psychiatrist, Dr. Hopwood, explains what happens to the person and the brain in the early stages of PD. The more you know about the disease, even if it is not pleasant, the better you can cope with it--as a caregiver and as person with the disease.
Psychiatrist's Video on Depression and Anxiety Disorder

SCIENTIFIC STUDY vs. REAL TIME EXPERIENCE

2010-06-30T15:57:00.006-04:00

E-MOVE, a research news service, has announced a study just released that confirms a relationship between Peripheral Neuropathy (PN) and Parkinson's Disease (PD).

Since Wally has suffered from Peripheral Neuropathy since 2001, I have found this study very interesting. In Wally's case, however, when he was first diagnosed, he was started on the agonist Bromocryptine alone rather than introduced to a dopamine replacement i.e. L-dopa or Sinemet or combination of an agonist and L-dopa as so often happens. He was diagnosed with PD in 2000. In the late fall of 2001, he didn't feel his leg resting against an electric heater (20 minutes) and suffered third degree burns as a result. The burn actually went down to the bone by the time I became aware of it. It was a miracle that this severe a wound healed, but what concerned us was the fact he never felt his leg burning and as the nerve cells regenerated still never felt any pain. The neurologist took him off the Bromocryptine and started him on Sinemet immediately.

In the study just released, the connection between PN and PD seems based on the patient's dosage of Sinemet. Perhaps more factors need to be worked into the study to figure out what happened to Wally. Still, it creates awareness of this real association for the first time. I thank Rob Bristol for bringing this to our attention on Facebook's PARKINSONS DISEASE AWARENESS GROUP page and have copied the report from the website news service for your reference.

Subject: Peripheral Neuropathy in PD

Date: 6/29/2010

Peripheral neuropathy is common in Parkinson’s disease, and is associated with greater levodopa intake, according to a new study.

Peripheral neuropathy (PN) was assessed in 58 randomly selected PD patients and 58 age- and sex-matched controls. PN was present in 55% of PD patients and 9% of controls (p<0.05). PN was symptomatic in 24 patients (41% of the entire sample). Comparing PD patients with PN to PD patients without PN, those with PN had similar duration of disease and time since diagnosis; greater disease severity; similar cobalamin levels; higher fasting homocysteine and methylmalonic acid; higher likelihood of using levodopa; and higher cumulative exposure to levodopa.

Severity of peripheral neuropathy was associated with greater levodopa intake and higher methylmalonic acid levels.
Elevated methylmalonic acid may lead to peripheral neuropathy, the authors note. MMA elevation can arise from cobalamin deficiency and from levodopa use. While they note they have not established a causal connection, the authors “suggest that L-dopa-induced elevations in MMA are responsible for the presence and severity of PN in IPD patients. We recommend screening for MMA levels in all PD patients receiving L-dopa to potentially identify patients with PN or at risk for PN.” They also suggest studies of cobalamin supplementation for patients taking levodopa.

Levodopa, methylmalonic acid, and
neuropathy in idiopathic Parkinson disease
C Toth, K Breithaupt, S Ge, Y Duan, JM Terris,
A Theissen, S Wiebe, DW Zochodne, O Suchowersky
Ann Neurol 2010;67:28-36
WEB SITE: Peripheral Neuropathy in PD

Henry McCambridge's Story: Being My Father's Caregiver

2010-06-28T13:31:00.005-04:00

Today I am pleased to post an article from a member of our group who has volunteered to tell us about his experience caregiving for his father who has Parkinson's disease. Henry has given up his career to take care of his Dad. We tend to forget the many sacrifices many caregivers make for those they love. This is a touching and remarkable story. Bonnie

BEING MY FATHER'S CAREGIVER
My father has always been an active and outgoing man. However, he developed Parkinson's disease in his 70s. It started with a slight trembling of the hands but this gradually worsened over time with akinesia and dementia appearing in the later stages. The decline in health depressed my father. It was heartbreaking to see the most influential man in my life lose the ability to take care of himself.

Before my father fell sick with Parkinson's disease, I was a full-time paralegal living only a few blocks away from him. When the doctor informed my sister and I that our father may require a dedicated caregiver, I volunteered to quit my job as my sister lives in another city with a family of her own.

Once I moved in to my father’s house, the first thing that I did was clean out all the clutter so that he could not trip. I then made sure that all of his chairs had a comfortable backrest with strong armrests so that he could lift himself out of them. To make sure that my father would be able to contact me when I am not at home, I purchased a personal medical alarm system. Renovating the bathroom was a more daunting task. I replaced the traditional bathtub with a walk-in one that is equipped with a seat. I also installed railings on the wall next to the toilet and bathtub so that it would be easier for him to move around.

My father now takes a longer time to complete daily tasks, such as getting dressed and taking a shower. He often gets frustrated with himself and irritated at his reliance on me. Sometimes I too become impatient and try to rush him, but that is often counter-productive. I now learn to use humor to alleviate the frustration. When my father is struggling with a task, I will crack a joke so he will lighten up.

Now that my father is no longer able to drive, I have become his driver. We go on regular outings to the park and store so that he has a chance to get outside. I make sure to stay by his side during these excursions so that I can assist him with anything.

When taking care of my father first became my full-time job, I experienced a lot of stress due to the loss of my social life. Plus witnessing the deterioration of my father’s health is a heartbreaking process. To help alleviate this stress and to give the both of us a break, I hire a caregiver from the local clinic twice a month. This gives me a chance to go out with some friends. While I enjoy the time off, I must say that I am always anxious to get back home and see my dad. He will always be the most important role model in my life and nothing can change the love that I feel for him.

REFERENCES:
Terms:
http://www.medicinenet.com/parkinsons_disease/article.htm
Definition of Akinesia:
http://www.medterms.com/script/main/art.asp?articlekey=6988
Medic Alert Alarms:
http://www.directalert.ca/

CAUTION AND CARING

2010-06-22T17:11:00.003-04:00

Today Wally's neurologist and I had a long discussion about what's happening with PD patients as their Parkinson's progresses.

He is reducing or removing Mirapex in his patients' treatment program because in addition to the compulsive and obsessive behavior that increases over time, he has found that Mirapex is contributing to a patient's "freezing," where the patient "locks up" or can't move. When he took the Mirapex away from one patient who was experiencing "freezing" at an alarming rate, the "freezing" stopped, almost immediately.

Different things can trigger "freezing" for a person with PD such as walking through a very narrow space or feeling crowded. It's not uncommon for "freezing" to occur while a patient is taking a bath. Looking back on such things, a person with a wacky sense of humor could write a comedy skit, but while you are faced with this dilemma, it is far from funny for both the patient and the caregiver.

Mirapex, like Permax before it, affects the circulation system and can erode the heart valve, so the patient may mimic symptoms of Diabetes where the limbs swell with edema and/or the skin becomes red and flaky and easily infected.

Wally also experienced Dystonia. It became so severe that he explained that he thought his body was going to explode when his muscles spasmed. Sometimes his feet faced each other when the contortion was severe. Removing Mirapex from his treatment has seen the end of his Dystonia.

The neurologist and I agreed that all drugs must be viewed with an eye on their toxicity. Everything including Sinemet at first seems to act like a miracle, but the basic effectiveness of any of the Dopamine replacement and enhancement drugs may only be within a five-year range. After that, increasing dosages enhances the side effects and augments toxic impact. Patients believe that the drugs are helping because there is the span of relief after receiving the drugs on schedule before the relief wears off and the patient is anxiously waiting for the next round of pills. This describes what happens to a person addicted to drugs, so that fallout cannot be dismissed with the use of these PD medicines as well.

As these results become more common in the medical field, don't be alarmed if your neurologist advises cutting back on meds rather than increasing them. A doctor's aim is still to try and give the PD patient the best quality of life possible, but it's becoming increasingly clear, more of the same meds are not the answer. Even meds to offset side effects of a drug program may lose their effectiveness and end up causing further problems. No one's sure because newer drugs are being released without long-term studies, thus the patients themselves become part of the experiment as PD progresses from person to person.

I wish I had answers for caregivers who are left feeling helpless as they watch their loved ones live with PD, and as one commented on our wall, the changes in the person she loves is driving her crazy. All of us who are caregivers understand her frustration and repressed anger.

What is the breaking point for the caregiver? Each is human, not superhuman, and what is demanded of caregivers becomes a superhuman expectation that few can meet. Even the strongest of the strong have breaking points. The neurologist repeated to me today, "None of this is your fault, so you must not blame yourself." But, we're talking about a person we love. Even if we rationally see that "it's not our fault," it's impossible to pretend it doesn't matter.

EXECISE OUR RIGHT TO CHOOSE PD TREATMENT

2010-05-03T19:00:00.001-04:00

Jack Frost and I have been corresponding because I asked him for his insights into the drug question. Jack has had PD for 31 years. His Parkinson's symptoms started as young onset and continues to progress slowly for him today. What’s further interesting is his background in physical chemistry and food science. He says, and I quote:

"Ahhhh meds!!!! I had a year-long battle with "Patients Like Me" about the cavalier prescribing of PD meds. I do not think the medical research community or the pharmaceutical companies have a firm grip on the mechanism of PD and exactly what roles dopamine and acetylcholine play. We used to call this throwing darts in the dark. I do not understand how the FDA has approved these meds with the weak statistical results for efficacy and safety. The prescribing doctors are relying way too much on what the drug reps tell them. I personally am experiencing positive help with Sinemet at this stage. I would not recommend anybody to take a dopamine agonist. I have studied the trial results for agonists and it appears to me they do more TO you than for you. As you can see this is a sore point with me. To answer your question directly, I would say that all PWP's are different and have different responses to the meds. This in itself is a sign that we do not have PD nailed down."

As a caregiver and a PWP, be careful if you are prescribed agonists. Be aware of their deterimental effects. If anything occurs that doesn't feel right, ask your pharmacist to look up the agonist in the pharmaceutical anthology and tell your doctor. Neurologists can't just keep on prescribing more drugs searching for a better quality of life for their patients without realizing the physical cost to the patient and family. And you as the patient and caregiver need to let them know that these side effects are not an acceptable trade off because the quality of your extended life is a sentence to hell. As far as I am concerned, you are better off to ride out the disease on as limited amount of Sinemet as possible. I'm still very angry at what Wally has suffered unnecessarily because we thought we had no choice. You DO have a choice, and you have the right to make that choice.

Marching on,

Bonnie and Wally

WALLY IS IMPROVING

2010-04-15T14:59:00.005-04:00

This morning, I attended a meeting with Wally's full medical team, and he's actually rallying. The doctor explained that it's not that the Parkinson's drugs shouldn't be taken. It's that in level 4 of the disease (end stages) the drugs are no longer effective. Some doctors, in trying to retain the patient's quality of life, prescribe higher dosages but at this stage the higher dosage is actually too toxic for the body to handle. He gave the example of giving someone Tylenol who doesn't respond to the medication. So one doesn't work to kill a headache, the person takes two. Two doesn't work, so he takes three.

I apologize for any misleading information I may have posted earlier. I was stunned and angry to see how much better Wally was doing off the PD drugs. Whether his associated conditions have been side effects of the agonists or natural extensions of his PD, we really don't know at this point. All any of us can do is the best that we can--that includes doctors and pharmaceutical companies.

Wally's team doctor explained that he has removed all of Wally's agonists, sedatives and reduced his Sinemet dosage to half of what it was. This is why he is not experiencing dyskinesia (excessive shaking). The doctor also said that, if he sees Wally becoming irritated, he will remove the last dosages of the Sinemet as well. He will only give Wally what he needs to remain comfortable, and Wally agreed that, if he got a flu bug and needed some anitbiotic, he would accept it but that is all. He wants no heroics to save his life. He's ready to go into God's arms.

At this moment, Wally's overall bloodwork is better. He's gained a few pounds--up from 92 pounds to 99.7 lbs. He's back to exercising and taking a daily walk on his stroller, and he's eating everything he's served, even two desserts if he can get them. The state of his wound remains stable. This progress could not have been reached if he had remained in the assisted living residence where he was.

Thank you all for your prayers and support. It has helped both Wally and me immeasurably, and we will carry on being here for the rest of you.

Love and hugs,

Bonnie

UPDATE ON WALLY

2010-04-07T12:58:00.001-04:00

Hi Everyone!

It's been awhile since I have given you an update on Wally.

He is less than 100 lbs., but the infection in his tailbone wound has been stabilized. Last Sunday, he asked for everyone to pray that God will take him home soon. He has found peace and is comfortable, but only because his team doctor and I decided to remove all his agonist drugs because he was hallucinating and struck the head nurse with a head blow (used his wood cribbage board) that could have caused severe injury if the thin edge had hit instead of the flat side. I knew that in Wally's right mind he would be appalled because he has never intentionally hurt anyone in his life. The only drug he is on now is Sinemet (L-Dopa or dopamine replacement) plus stool softeners.

Something amazing has happened. Those blasted enhancement or agonist drugs have caused the dystonia, the behaviour disorder and the peripheral neuropathy. He didn't inherit them along with his Parkinson's as I was led to believe, and now the symptoms have disappeared. I can actually make out what he's saying when he talks to me. He doesn't drool any more. His body isn't collapsing to one side. He's not hallucinating and acting out, and he doesn't feel as if he's going to explode just before his body goes into a horrendous spasm. These spasms have stopped too. He's very tired and he's lost his mobility, which is the Parkinson's, and so he does have to be in a wheelchair to get around. I'm wondering if the neurologists get a quota from drug companies to prescribe these agonist meds so they can carry on experimenting with new drugs, because when I reported the changes Wally is experiencing, the neurologist's nurse was polite in returning my call but it was clear no one is going to alter their treatments of other people.

For now, be aware that these so-called miracle drugs are far from that. They cause worse long-term damage than the actual disease, and in the end, rob patients of any decent quality of life. The more you can battle Parkinson's naturally, the better.

God bless you all.

Hugs, Bonnie

GOOD-BYE AND HELLO

2010-03-13T15:36:00.001-05:00

There are all kinds of bravery and much of it is never seen.

Today Wally refused to take his meds, food or water. He just wants to sleep for a thousand years. He told me he was tired of the pain, and he has never complained of pain before. When I told him I had left orders with the nursing team not to make him do anything he did not want to do, he squeezed my hand and said, "Thank-you."

A long time ago I promised him I would let him go when he told me the time had come. I have kept my promise, but I can't stop crying. I have kept these tears and this pain from him, but now I can't hold back. Tomorrow he may not know me at all. God is coming for him soon. Then I will rejoice that he is free ... at last. And home, in God's arms, where he belongs.

And he will join my sister-in-spirit, Ellie, at the Bonwallelle Bench, to wait for me.

WALLY IN NURSING HOME

2010-02-21T08:52:00.002-05:00

Wally was declared an emergency last week and moved by ambulance to a long-term care facility -- Extendicare Oshawa -- where he will receive 24/7 nursing care. His weight has dropped to 101 lbs. The care he was receiving at the assisted living home was not adequate for his needs. His teeth have fallen out so he needs a special diet, and the state of his tailbone ulcer has reached such severity that he requires specialized wound care and constant rotating in bed to keep weight off the wound.
     However, he almost gave a nurse a heart attack yesterday when on his own he got out of bed and hobbled over to the "parking spot on the wall" where his walker and wheelchair were placed. His undaunting spirit carries on.
     Our daughter Trish helped me to tell him on Friday because he has feared moving to a nursing home and she worked out with him what to pack. While I had to go ahead and sign the papers, she waited with him for the ambulance. She said he waved good-bye to all his friends and staff at Kingsway as the paramedics wheeled him out on the stretcher.
     Trish and I are relieved because we are impressed with the specialized care provided at Extendicare Oshawa. He's also under the care of a doctor assigned to his case so his meds and wound care can be adjusted immediately if required.
     For me, the last two months have been a nightmare of constant worry and advocating for corrective care on his part. Our family doctor, who saw Wally's backside "wound", and Durham's Community Access Care forced the health ministry to move him ahead on the waiting list. We have been very fortunate to have such a caring family doctor, Dr. Stacey Ross, as well as determined neurologist, Dr. John Adams, of the Canada's highly respected movement disorder clinic in Stouffville, Ontario.
     On Saturday morning, I awoke so stiff I could barely walk and then I found it difficult to stay awake. My next-door neighbor drove me to Oshawa so I could visit with Wally for a few hours in the afternoon, and I promised to have dinner with him today. It will take him about a week to adjust to his new environment and for Extendicare to get his schedules and services working. He will receive special massage therapy together with personalized activities assigned along with his diet and wound care.
     It will be some time before I go back to journaling about Wally's battle with Parkinson's on this blog or leading my Facebook group forward. I am exhausted from worry, lack of sleep and advocate intervention. Now that I can let go, my body is letting me know just how tired it really is. It's unfortunately true: In our health system, if you're asleep at the wheel, nothing gets done.
     Thank you all for your loving support and prayers,
     Bonnie

EGO AND ID

2010-02-05T16:33:00.001-05:00

One morning when you wake up and look at your partner, you finally realize the person sleeping beside you is not the person you married. What you took for granted no longer exists. Our family doctor explained it to me this way. The ID has gone. Only the EGO remains.

Yes, it is part of Parkinson's dementia. While Wally can still calculate a mortgage in his head, he seems to have lost his empathy. An example comes to mind.

When we were checking out nursing homes in preparation for his inevitable incapacity, we were touring the lounge and a couple were playing cards in a corner of the room. Wally immediately brightened and ambled over to watch. As he watched he could see the woman could make better plays and he wanted to interfere "to teach" her. What he missed was that the woman was clearly an Alzheimer's patient. Her husband had elected to move into the nursing home with her, and this was just a social activity they could share. It didn't matter who won or lost, but Wally, obsessed with winning, couldn't stay quiet. He felt compelled to tell her what would be a better play. The woman became agitated and I could see the husband growing angrier with Wally for his interference. I jabbed him in the elbow and tried to steer him away from the couple and the table, but he refused to move. I thanked the man for letting us visit, and stood in front of Wally like a windstorm so he couldn't push the walker forward more toward them.

"The floor nurse would like us to visit the dining room before we leave," I told him to distract him.

"She can wait."

"Maybe she can, but we can't. We have to be back home in time for your four o'clock pills."

I never know when he's going to become stubborn and difficult, but this time he reluctantly turned around. Once we were in the hallway and out of earshot, I explained to him about the woman's condition and why her husband was annoyed with Wally's interference.

"But I just wanted to show them some simple moves they can play."

He couldn't see that what he wanted to do wasn't the right thing to do under the circumstances. The checks and balances that the ID provides no longer work. Only the EGO functions. We've all had to learn how to negotiate with him differently as a result.

Sometimes I feel as if I am talking to a three-year-old who doesn't understand the consequences of his actions. He lives in the moment. For example, carrying toothpicks in his hands when he is walking is an issue. He doesn't understand that, if he falls, this small object can become a sharp weapon. I have to say, "Give me the toothpicks to carry for you and you can have them back when you are seated at the table."

If I just command him to give me the toothpicks, he resists and grabs the toothpicks with fingers that become as rigid as steel. Often I can't open his hand, so rather than struggle with him, I've had to learn not to think of him as an adult but to treat him with the same reasoning I would use with a child in that moment.

Michael Fox is right. In circumstances like these, the caregiver has to be fluid, not rigid, or you are faced with a no-win power play.

MEDS AND CHECKLISTS

2009-12-16T13:00:00.014-05:00

I have received an important pamphlet produced by Parkinson Society Canada. It lists the most common drugs administered to Parkinson's patients today and a checklist for caregivers to periodically note the progression of the disease for the patient's neurologist, who monitors and administers his/her medication. Some excerpts appear below. Bonnie

WHAT MEDICATIONS ARE USED TO TREAT PARKINSON'S SYMPTOMS?
Since many of the motor symptoms of Parkinson’s are the result of a lack of dopamine in the brain, most drugs used to treat Parkinson’s are aimed at temporarily replenishing or imitating dopamine. The following list is a guide to medications approved by Health Canada to treat symptoms of Parkinson’s. Speak to your doctor for detailed information regarding effectiveness and side effects of a particular drug.

Levodopa (levodopa/benserazide [Prolopa®], levodopa/carbidopa [Sinemet®, Sinemet® CR])
• Converted into dopamine in the brain and stored in nerve cells to replace depleted dopamine
• Combined with another drug, carbidopa or benzerazide, allows more levodopa to get to the brain and reduces side effects
• Helps improve muscle rigidity and movement
• Side effects include dyskinesias* (involuntary movements)
• Over years of use, may be associated with “wearing off”*

Dopamine Agonists (bromocriptine [Parlodel®], pramipexole [Mirapex®], ropinirole [ReQuip®])
• “Mimics” or imitates action of dopamine
• Can be used as initial treatment or with levodopa in advanced stages
• Side effects include sleepiness, hallucinations, leg swelling and obsessions with food, sex and activities such as shopping, gambling and Internet use

Amantadine (Symmetrel®)
• Enhances dopamine release and blocks glutamate, a brain transmitter
• Used to treat early symptoms
• Can reduce dyskinesias and improve wearing off

COMT Inhibitors (entacapone [Comtan®])
• Block a key enzyme responsible for breaking down levodopa before it reaches the brain
• Can improve duration of response to levodopa
• Side effects include dyskinesias

Levodopa/carbidopa/entacapone (Stalevo®)
• Substitutes individually administered immediate-release levodopa/carbidopa + entacapone
• Used to replace immediate-release levodopa/carbidopa (without entacapone) when patients experience end-of-dose wearing off

Levodopa/carbidopa intestinal gel (DuodopaTM)
• Levodopa/carbidopa gel administered throughout the day with a pump via a tube directly into the small intestine
• Used in advanced Parkinson’s disease
• Approved under the Notice of Compliance with Conditions (NOC/c) policy2

Monoamine-Oxidase-B Inhibitors (MAO-B) (selegiline [Eldepryal®], rasagiline [Azilect®])
• Enhance effect of dopamine by preventing its breakdown
• Side effects include dyskinesias

Anticholinergic Drugs (Apo®-trihex, benztropine [Cogentin®], trihexyphenidyl [Artane®])
• Corrects imbalance between dopamine and acetylcholine

TERMINOLOGY

Dyskinesias:
Dyskinesias are involuntary, purposeless movements of any body part. They may be mild (slight ankle twisting) or severe (uncontrollable writhing movements). Dyskinesias are usually felt during the time you are on when you have taken your medication; this is also called “peak dose dyskinesias”.

On-Off Symptoms:
When medications such as levodopa relieve symptoms, you are in your “on” state. This means you can do your daily activities. When the medication does not work and the symptoms return, you are in your “off” state. This means you may not be able to do the things you want or need to do. If your symptoms return before your next dose of medication, it means you are in a “wearing off” state.

SURGERY AND PARKINSON’S MEDICATIONS
If you are going to have surgery, especially requiring a general anaesthetic, talk to your surgeon/anaesthesist ahead of time. He/she may want to discuss anaesthesia, pain relief and your drug treatment with your doctor/neurologist. Certain pain relief drugs can interact with Parkinson’s medications.

How can I get the most benefit from my Parkinson's medications?

• The timing of medications is an important way to control your symptoms. Follow the guidelines provided by your health care professional.
• Use a timer to remind you to take your medication on time to avoid “double-dosing.”

• Take each dose with a full glass of water to aid absorption.
• Do not break, crush or chew controlled-release tablets, unless instructed by your doctor.

• For nausea, take the drug after meals or with a cracker or fruit.
• Keep an accurate list of all medications, including over-the-counter products, herbal remedies, vitamins or supplements. To get a copy of Parkinson Society Canada’s Medication Card, visit: http://www.parkinson.ca/.

What are the side effects of Parkinson's drugs?
The most common reactions (which occur within the first several days of a new treatment) include nausea, vomiting, dizziness (drop in blood pressure), sleepiness and visual hallucinations.
     In the last few years, levodopa and dopamine agonists in particular (ropinirole [ReQuip], pramipexole [Mirapex]) have been associated with the emergence of behavioral changes such as impulse control disorders. These are characterized by failure to resist an impulse to perform certain actions.
     Impulse control disorders include a range of behaviors such as compulsive gambling (up to 5% of treated patients) or shopping, hypersexuality, binge eating, addiction to the Internet or to other recreational activities. These activities are often pleasant in the moment, but over time may become harmful to you or to others. If you are experiencing these behaviours, tell your neurologist/doctor. Often the medication can be adjusted which can reduce or control the behaviour.
     Care partners can play an important role in helping to identify when these behaviours occur. If you are a care partner, tell the person if you have noticed a change in his/her behaviour or personality and encourage him/her to speak with the doctor immediately so medication can be adjusted.

What are non-motor symptoms?
People with Parkinson’s often experience non-motor symptoms which can be more bothersome than motor-symptoms. Some examples of non-motor symptoms include constipation, depression or anxiety, sleep disorders and cognitive changes. Adjusting the Parkinson’s medications can often control these symptoms. If this approach doesn’t work, specific treatment may be required. For example, depression is common in Parkinson’s and usually responds well to treatment. Medications to improve cognitive function are also available.

How will Parkinson's symptoms change over time?
Parkinson’s will change over time. Often the changes are subtle and you may not notice them. The following checklist may help you identify these changes. Complete the checklist every 9 to 12 months. Discuss the changes with your doctor.

Source: Info Parkinson, Parkinson Society Quebec, Newsletter Spring 2009 and Summer 2009
www.parkinson.ca

SAD AND TIRED

2009-10-30T09:19:00.001-04:00

Wally's condition is at the point where the neurologist can’t perform any more magic. His combination of diseases have taken over—Dystonia and Peripheral Neuropathy together with the Parkinson’s. His poor body is so twisted. The picture on the left was taken in 2006, on our 25th Anniversary when we returned to the Old Mill Inn in Toronto where we were married in the Chapel and held the reception in the wonderful restaurant after. In the past three years, his body has doubled over so that he is much shorter than I am, and he has lost even more weight. Only his legs have not shrunk in length.

One night in the past month, when the drugs did not kick in, I found him with his feet facing each other, and he was quaking from his waist down. He couldn’t stand. Eventually the meds did kick in, but it was scary to see and scary for him to experience. We have now fitted him for a wheelchair, and we’ve signed papers to admit him to a long-term care facility near me as soon as a room becomes available because the assisted-living home can no longer handle his needs. If he catches the swine flu, he won’t make it. He’s already having problems breathing because of the way the Dystonia has twisted his body to bend over his stomach. This deformation compresses his chest so his heart and lungs have to work harder. Eventually his heart will give out. He already experiences many “cold” sweats, which is indicative of heart trouble, and I’ve observed his breathing is more labored, though he never complains. The Peripheral Neuropathy actually numbs the terrible pain the Dystonia normally causes. Not to panic. This is not the typical path of Parkinson’s Disease. Wally has inherited his peculiar “cocktail” mix of conditions. I just haven’t had the heart to keep up the Parkinson’s blog. Frankly, for me, it is not cathartic, just plain painful to go over what we live with every day.

CAREGIVING: FEARING THE UNKNOWN

2009-09-30T13:41:00.002-04:00

When your loved one is first diagnosed with Parkinson’s disease, there is an immediate reaction of horror within both of you. This gut reaction stems from disinformation you’ve collected in your subconscious over the years, and it is reflected in your fear of what you think you know and of the actual unknown.

Some people will immediately quiz the doctor. What is it? What happens? How do you treat it? Others take the news and internalize it in the beginning stages of denial. “Uh-uh. Not me. I don’t want it, and I’m not going to have it. I’m outa here.” Some react with rage: “How dare my body do this to me!”

There are as many reactions to the diagnosis as there are people in the world. Each response is personal. Each is natural. And fearing the unknown is common to us all.

For the one diagnosed, there is the fear of intolerable pain and personal embarrassment along with your fear of loss of independence/dignity and personal control. There is also the fear of losing intimacy with your partner and sexual attractiveness.

The care-giving partner also has fears. The prime one is a daunting prospect: you immediately recognize that your own life is forever limited by the disease afflicting your loved one. How daunting depends on your personal health, personality and circumstances. By your nature, you may be more predisposed to be a more effective caregiver than others who live with compromised health or independent interests.

The most important thing to understand is that there is no wrong way or right way to be a caregiver.

That’s difficult to grasp at the outset because many caregivers immediately experience guilt similar to survivor guilt. Why? Why not me instead? Sometimes it does seem easier to be the afflicted one rather than the observer. But it’s not true. There is nothing easy for everyone involved.

Those dominated by guilt act with pity. They overcompensate by trying to do too much. They become advocate, nurturer, nurse, and servant. They put themselves last in the act of providing tender loving care. Similar to a workaholic, they learn their service is never finished. Their sole reason for being becomes the dedicated care of the one with the disease.

Even those caregivers not dominated by guilt periodically feel it and are driven by it. This is why movement disorder clinics provide social work services as well as physiotherapy for both the patient and the caregiver. They are there to help you learn to cope, to suggest practical resolutions to the frustrations and problems that arise. This includes forming group sessions that allow you to vent, perhaps with other caregivers where no patients are present.

Those with the disease can also meet with others like them where they can share their experiences and talk about ways they’ve learned to handle difficulties, such as getting out of bed in the morning. A friend of Wally’s lives on his own with PD. He enjoys demonstrating how he rocks his body to get enough momentum to pull himself up and if he’s stiffer than usual how to roll off the bed and use the bed to pull himself up to a standing position. Patient groups can laugh at themselves as they talk about their day-to-day mishaps and ways to compensate.

I personally don’t find venting in a group helpful. To me, dealing with the disease depends on acceptance. I’m looking for solutions, not concentrating on the frustration. If I describe something that has happened, it is to give information that will lead to a helpful suggestion to change my way of dealing with the situation. It can be from communication to physical assistance.

For instance, if you don’t know how to brace your back properly when you try to lift someone in a seat or into a more comfortable position in the bed, you can wrench muscles and hurt yourself so you can’t do it any more. By not watching how you word something, you can destroy the patient’s self-esteem, and that can lead to unpleasant power struggles between you.

Mixed groups are also beneficial because some other person with PD who is more of a communicator might explain something your partner can’t to help you learn more about what their needs are and what would be a more effective way for you both to deal with a particular problem.

I am hoping that as we carry on with this journal, you will present questions, share ideas or offer helpful tips that have worked for you. Why not start with today’s post? How did you react when you first heard the Parkinson’s diagnosis? What did you do? What was your first or worst fear?

REFERENCES:
Basic Tips for Caregivers
http://www.allaboutparkinsons.com/seven-helpful-tips-for-caregiving.html
http://www.pdf.org/en/caregiving_fam_issues
Caregivers' Home Companion--worthwhile reading
http://www.caregivershome.com/news/article.cfm?UID=2209
Slowing the progression of Parkinson's disease
http://www.sciencedaily.com/news/mind_brain/parkinson's

CAREGIVING: AFTER THE ORIGINAL DIAGNOSIS

2009-09-28T08:49:00.006-04:00

I am digressing from our ongoing story of Wally’s experience with Parkinson’s disease and going back to the initial period when you and your loved one first learn he or she has the disease. This came to mind when a dear friend’s husband was recently diagnosed with PD.

She called me because they had been given the names of three drugs their neurologist will likely prescribe, and one of the comments the neurologist made had her concerned. They were warned that once he started to take the drugs, he could be irritable. That immediately frightened her because of her heart condition. Her tolerance level as a caregiver was compromised. She was already worn out dealing with his shifting moods.

First off, I’m not sure why the neurologist focused on this one side effect more so than any other. Every person’s metabolism is different. No one responds the same way as another. Plus, for some, there are preconditions such as rheumatism, arthritis or heart, for which they are already being treated, and the addition of Parkinson’s drugs complicates the person’s response. In some situations, serious medical problems can result if taken together with other drugs, including cough medicines or natural/herbal supplements. If a person has cancer, for instance, mixing Parkinson’s drugs with chemo therapy could be deadly. One of the agonists, selegiline, could escalate the progression of an untreated cancer or, on its own, actually trigger melanoma.

For some strange reason, a vast number of people afflicted with Parkinson’s are highly intelligent, multi-taskers. One of their frustrations is discovering they can’t juggle the variety of activities or thinking levels they once did. They become irritable because they are frustrated with themselves. They don’t understand what has changed, why they can’t cope the same as they always have.

Unfortunately, the onset of depression is also another product of Parkinson’s, not just a result. The person you love may suddenly become reclusive. Even going to see a movie becomes a big deal. Staying home is safe and unchallenging. I recall Wally would tell me to go with our grandchildren to the theatre. He didn’t want to go with us. “Someone has to stay home and look after Yogi.”

The dog needed a babysitter. Of course I was flabbergasted.

Once the diagnosis is made, then many things that may be irritating you about the changes in your loved one begin to make sense. I learned that change became threatening to Wally so if I told him about a social engagement or our going out somewhere in advance, he would fret. By the time we were to go, he would have himself so worked up the worst scenario was bound to happen. I learned not to tell him of certain things in advance because, taken by surprise, he would handle it with no problem.

With my friend, she and her husband are overwhelmed with the diagnosis, never mind trying to absorb all the information and implications of side effects. My advice to her and to you is:

1. The person who has the most knowledge about Parkinson’s drugs is your druggist. Make your druggist your best friend. Before the person with PD takes the first pill, make sure you have discussed all pre-existing medical conditions with your druggist to double check that other meds taken with the Parkinson’s won’t set off worse problems. Also make sure that the dosages aren’t too high. On any new drug, people have to build up their acceptance level.

2. Reduce the protein in their daily diet because it interferes with the effectiveness of the L-dopa (Sinemet) or dopamine replacement drug. It doesn’t mean you cut things such as meat out of their meals. It means reduce serving size and increase vegetables and fruits.

3. Encourage the person to eat one bar of chocolate per day, and the darker the chocolate the better. In fact, the person with PD may crave chocolate. Why? Endorphins, which give a feeling of pleasure, and serotonin, which acts as an anti-depressant, are naturally found in chocolate. They work together with the dopamine replacement to offset feelings of depression. I understand that drinking milk at the same time as you eat chocolate cancels the good effect of the chocolate. For people who are allergic to cocoa, this suggestion won’t work. Instead, they may suffer terrible migraine headaches.

4. Take one day at a time. Eventually, the person with PD will regain confidence in tackling more social events, but until then, avoid their fretting over all the imagined possibilities by telling them on a need-to-know basis.

5. Expect that some of the problems experienced before the diagnosis, such as irritability or depression, will actually improve or smooth out once the person starts on their daily pill regime. Yet, be aware that any change that upsets the person, such as dizziness, excessive sleepiness, drop in blood pressure, imagined vision or violent nightmare, can be side effects and must be reported to the neurologist immediately.

6. To prevent confusion in administering the pill schedule (and it can be quite a chore managing what pills are taken when), have the pharmacist prepare the pill dosages in bubble packets. Each one is labeled with the time the pills are to be taken, the name of the pill contained along with the matching description and the individual pill amount.

7. Exercise is pandemount to godliness for people with Parkinson's. To prevent their muscles from stiffening they need to exercise every day. Expect resistance to this suggestion, but those who follow it actually help delay progression of the disease. For those couch potatoes you can't motivate to exercise, then the alternative is to make sure they get professional massages as many times a week as you can afford.

REFERENCES:
Selegiline:
http://en.wikipedia.org/wiki/Selegiline
http://www.drugs.com/pro/selegiline-tablets.html
http://www.rxlist.com/eldepryl-drug.htm
Risk of melanoma when taking Selegiline:
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697046.html
http://www.drugs.com/ppa/selegiline-hydrochloride-l-deprenyl.html
Chocolate:
http://longevity.about.com/od/lifelongnutrition/p/chocolate.htm

INNOVATIVE AND PRACTICAL

2009-09-24T12:07:00.005-04:00

We moved June 1, 2005. To this day I don’t know how I survived that month except for sheer grit. Work pressure was at its worst. I would either get up at dawn and work in my office until lunch, go over to the other house and paint or wallpaper and come back for dinner and then work in the office until midnight, or later, OR work in the office all day and spend the night catching up at the other house.

For me, in other renovation projects over the years, the first week was the worst for muscle stiffness and soreness, but this time the agony just kept growing from day to day. The only thing that kept me going the last week was strapping a magnet flex pad to my back. My brother, a dear friend and our kids added their help to the movers on moving day.

Wally endured a nightmare of “freezing” as he tried to walk between stacks of cartons piled like narrow walls, first in the old house and then in the new house. I directed everyone to get furniture in place as quickly as possible, but it’s impossible to move and unpack boxes in one day. We did manage to get the kitchen and living room settled first and moved most of the boxes blocking passage to the bedroom to the den.

The main bedroom was 14-feet long, and it allowed twin beds with three feet between. Again I made a major mistake in the beds I selected. I thought Ultramatic beds would be the best answer. At first they seemed to be, but as time progressed, Wally could not get out of his bed easily, even if grasping a pole we installed. He preferred sleeping in his lift chair in the living room because he felt he had more control. Though the Ultramatic's raised position seemed to help my breathing through the night, the continual pressure on my lower back began creating problems. Neither of us slept soundly. I now realize I should have bought Wally a hospital bed and eventually replaced his Ultramatic with a rental hospital bed with a special comfort mattress to prevent bed sores.

The adaptations to the main bathroom made a huge difference. Just a simple thing like a raised American Standard toilet helped my stiff knees and the extra bars and supports meant Wally didn’t have to ask for assistance to get up on his own. Now, when we have to use a regular toilet, it’s always a shock to sink down to the lower seat. The standalone cupboards were only one-foot wide. Light switches were also lowered. The raised sink allowed knees underneath, and the shower could be converted into a drive-in by removing the short step. The shower design was more in keeping with an open Eurpean style. We used a glass-block enclosure and didn’t need a shower curtain. The shower walls were reinforced so not even an earthquake could budge the grab bars from their supports.

We had yet to install the smaller 4-foot by 10-foot bathroom. Originally, we planned for a half-bathroom, but one of my freelance clients, who published an HVAC magazine, proposed I write a showcase article about bathroom renovations for the handicapped. The publisher of Toronto-based Contracting Canada magazine wanted to feature advertisers who wished to donate product. To my utter amazement (and clearly the publisher’s salesmanship), Safety Bath, Nuheat, Moen, Toto Toilets/Washlets and Ponte Giulio (Italian manufacturers of grab bars) as well as Panasonic Whisper Fans were eager to contribute.

For this project, a walk-in tub was the best solution, and the dimensions of Safety Bath’s ‘Serenity’ model were perfect—30 inches high, 36 inches from front to back and 34 inches wide. Other comparisons also made the ‘Serenity’ tub ideally suited for this installation as it holds same amount of water as a regular bathtub (larger ones may need a larger water heater because of greater capacity); fills faster and drains faster than larger walk-in tubs; has a wider door that swings outward for easier entry—others are designed with a narrow door that opens inward, and this could prevent you from quickly removing someone in an emergency; has a low two-inch step in to tub; works as a soaker tub with 4-jet hydro-therapy action, 12-jet warm air massage and an optional heated seat; weighs 120 pounds and is Canadian-made from durable, easy-to-care-for fiberglass versus heavier steel used in some imports; accommodates and is primarily designed for the limited mobility of people using walkers—wheelchair users require a lift device; and finally comes complete with pop-up drain valve, MOEN pressure-balanced, scald-guard taps and MOEN hand-held shower. It’s ideal because hydro-therapy has been shown as beneficial in helping people with circulatory problems, arthritis and sore muscles.

The raised Toto toilet for handicapped users and electric Toto ‘washlet’ seat cover automatically cleans the private parts that may be difficult to reach. The Ponte Giulio grab bars come in colors you can co-ordinate with any bathroom décor, but the most significant difference is that they are covered with an anti-bacterial coating and have a special flange system to provide secure installation into any wall surface. One style of their grab bars raises to the wall when not in use and lowers when needed.

My resulting articles were posted on the Disabled World and Industry Canada web sites in addition to the feature that appeared in the 2006 Contracting Canada winter magazine issue. With these renovations, we were prepared to keep Wally at home until his final days, but our circumstances drastically changed in the winter of 2008.

RENOVATING AND ADAPTING

2009-09-23T19:45:00.002-04:00

Once I drew the layout of the house from the measurements I had taken, Wally looked at my plan and suggested that we close the sale of our house one month after we took over the house we needed to renovate.

In some partnerships and marriages, both like to cook. That would mean adapting the kitchen to wheelchair use as well, but Wally rarely made tea, let alone coffee, so the kitchen was my domain. I didn't have to consider him when I redesigned it.

For the rest of the house, I searched the Internet for wheelchair accessible building specifications. The first thing to estimate was the size of wheelchair Wally would need. Wheelchairs differ with the shapes and sizes of people who fit them. Wally had sufficiently shrunk from his six-foot frame that he could fit a small wheelchair. These are narrow enough to pass through existing 33-inch doorways.

If he had needed a wheelchair wider than the doorway, we intended to remove the frames and mount sliding doors that move on tracks (similar to a barn door) above the entrances to the bathroom and master bedroom. We were also working with the smallest room size possible for a wheelchair-accessible bathroom—8 feet by 8 feet. Between the sink and entrance to the shower, there had to be at least a three-foot turnaround space for a wheelchair to rotate. This meant installing conventional two-foot-wide bathroom cupboards was out of the question.

Most pictures of bathrooms built for wheelchair use looked sterile and institutional. I was determined that our bathroom would not remind anyone of its principal use. There was no second bathroom, and for older couples, one bathroom could be a disaster if one couldn’t wait for a turn to use it. Luckily, the den was on a solid foundation and the crawl space linked to the piping under the main bathroom next to it, so, on my plan, I took four feet off one end to create a second half bathroom. We also decided that we would make the exit for the wheelchair to the deck and build a ramp down the side of the house to the driveway.

Flooring is another major consideration. Hardwood isn’t always the best answer. Whatever is chosen must be able to withstand the weight and repeated motion of the wheels over the floor. Tiled floors in a bathroom for an unsturdy person are risky. They are too hard and inflexible. If someone falls, the resulting injury may be worse than it needs to be. I selected a wheelchair-resistant cushioned flooring for both bathrooms.

Next I wanted to engage a contractor so I could be guaranteed full-time work on the new place during the month before closing the sale of our house. I interviewed ten contractors. To each of them I showed my plans. A few immediately told me what I could and could not do—no outside-the-box thinking for them. Others didn’t like the idea of my working with them. Too many had such high quotes that it made my sell-high, buy-low plan unaffordable. A group of four handymen disbanded over arguments about how to implement my plan. I was getting discouraged until I interviewed the tenth contractor. He seemed more open-minded, showed no hesitation in letting me become involved in doing some painting and wallpapering, but what impressed me most was, at the end of our discussion, he asked to take my plans for a few days. He wanted to do some of his own checking before he got back to me with a quote.

During those few days, he visited area long-term facilities to see their standard solutions and asked myriad questions. When we next saw him, he not only had a quote we could afford, he had great adaptations to suggest to my plan.

EXAMPLES OF EUROPEAN-DESIGNED
WHEELCHAIR-ACCESSIBLE BATHROOMS.

THINKING AND PLANNING

2009-09-22T19:11:00.001-04:00

By Christmas of 2004, Wally was enjoying reasonably good days. We could go out for dinner, socialize with friends and enjoy a simple quality of life as long as it didn’t include long trips. This meant we could not travel to visit our daughter and her family, who live more than two hours drive away. They did and do come to see us often. That Christmas was great fun. Wally enjoyed playing family games with our grand kids and son-in-law while my daughter and I spent some mother-daughter time alone. The three children especially enjoyed playing with Yogi. They had him racing back and forth fetching his ball.

For Wally, the six weeks of hell had passed like a blink in time. They were behind him and he was marching forward, but I couldn’t forget. During the nurses’ daily visits, we often talked about what was ahead and the adjustments we would have to make.

Looming over my head was the house. What were we thinking when we bought it? I blamed myself for not being more realistic. The more I looked into the costs of what needed to be done, the more I worried. Now we didn’t have the savings it would take to renovate this house to accommodate the progressive stages of Wally’s disease.

Wally doesn’t believe in asking God for anything. Everything that happens in his view is a result of our choices, and we have to live with them. I, on the other hand, had nowhere else to turn. “I don’t know what to do, God. I just know I have to do something.”

As I was driving along one day, the mantra “location . . . location . . . location . . .” flashed across the screen of mind. I stopped the car. If Wally wanted the house because of its location, someone else would buy it for the same reason. We had kept it in a pretty state. Sell high, buy low, and use the difference to renovate for wheelchair accessibility and mobile limitations. “Thank you, Lord! That’s a great idea.”

This time I would measure every doorway and hallway. I went to a friend in Wilmot Creek who was a real estate agent and explained what I needed to do. She immediately saw the possibilities. Not only that, house values in Wilmot Creek had increased, to which I countered, “Which means we’ll have to pay more.”

“Not necessarily,” she explained. “Some houses have good bones but they don’t show well. Do you want to look at a few?”

Of course I did. She showed me five possibilities, and like Wally often did with his clients, she left the one she suspected I would like to the last. The first four left me cold but I could see potential. I had already conceded that location could not be a consideration this time, but the fifth house took me by surprise. As soon as I walked in, before I had measured a doorway, I knew the house was for us. There was lovely light flowing through it. I looked past the dismal wall colors and trailer-park kitchen, and headed straight for the den. Low and behold, it overlooked a golf course at the putting end so missed balls would not end up breaking our windows.

I then went home to Wally and explained the plan. At first he balked. He hated moving at the best of times. That forced me to go back over each problem we faced through the six weeks when he lost most of his mobility. I then went over the expense to change the existing house to what we needed as opposed to the possibilities by moving to a place that had a structure better suited to renovation. “I promise we won’t go into debt. We’ll buy low and sell high, and the difference will pay for the renovation.”

He looked at me with some skepticism and then nodded in agreement. “I doubt it will cover everything. But what concerns me most, you’ll be on your own. I won’t be able to help you.”

“Just inspect things as they go along. You can tackle the contractor if you see he’s neglecting something.”

“That’s true. And I want to go over the costs with him.”

“That’s good,” I agreed.

“Have you found a contractor you like yet?”

“No. First I have to draw a plan.”

Then he grinned. I had been drawing house plans since the day we met 24 years before. I was ready for this move.

DEPRESSED AND DEBILITATED

2009-09-21T22:50:00.005-04:00

During the six weeks Wally was off any agonist to accompany his Sinemet (L-dopa), he descended into a personal hell. His usual good spirits failed, and he cried, begging me to let him go if God was ready to take him because he didn’t want to live like this.

No one seemed alarmed that Wally was not responding to Sinemet on its own, but I expected him to be up and dancing. I had read the story about Morton Shulman, Canada’s most famous pathologist who developed Parkinson’s and was the first to import L-dopa from Europe to treat his own condition. He wrote how it felt as if he had been blessed with a miracle drug. The Parkinson’s symptoms disappeared. Of course, in time, the miracle degenerated into a myth as the higher doses of L-dopa to keep the symptoms at bay turned on him and he developed involuntary shaking or dyskinesia.

The only ones to see Wally lose his mobility and spirit were his visiting nurses and me. Each day one came to dress his infected legs. When the antibiotic didn't work, our family doctor switched to a stronger form. I don’t remember the name.

Wally was so weak he needed help dressing, getting out of bed, walking to his lift chair, going to the washroom and feeding. He was a prisoner inside his own body. The “mask” appeared. When he tried to speak, there was no expression, just his eyes eerily following me wherever I was in the room. Signs of dementia were the most unsettling. He became forgetful and didn’t seem to understand when I explained something. He would ask the same question over and over again. That ripped my heart apart. I could take the physical breakdown but not the mental and spiritual.

One good thing. The shower was so small that if I managed to get him into it, he couldn’t fall over, just slide down on his knees, but then I would have the problem of how I was going to lift his deadweight. So, showers were only taken in the slim window of the day when the Sinemet seemed to take hold for short periods. Most embarrassing to him was becoming incontinent, but through this period the usual constipation resulting from stiffening muscles that could no longer contract properly changed to bouts of diarrhea. Wally experienced the loss of his dignity and quality of life, and it nearly destroyed this proud man of mine.

At first I held up well. I was amazed at my strength and resourcefulness. But, working in my home office and being at his beck and call 24/7 took its toll. During the third week, fatigue set in. By the end of the sixth week, I had to face reality: I might not be able to keep my promise to keep him at home.

Just as I had run out of ways to motivate him to keep fighting, one of his ‘pool’ buddies visited him. As Bob spoke, I sat in amazement. He spoke the words that Wally not only needed to hear, but I had prayed would reach him. Bob said, “I felt God directed me to see you today, Wally. I had no idea what I would say, but I know the Lord, and I knew He was using me to tell you what you needed to hear.”

Wally was amazed and humbled. His self-pity party was over. “I promise I will keep fighting,” he told me. He not only soldiered on then; he has ever since.

At the end of the sixth week, his infection cleared up, and his neurologist started him on low doses of the agonist, Mirapex (pramipexole dihydrochloride). It was a relatively new drug. The first person I consulted was my good friend the druggist. It was he who confirmed the young doctor’s suspicion that the Permax was likely the cause of Wally’s legs swelling and infection because of the way the drug attacks the circulation system.

The first thing he explained was that most of the agonists were based on the same chemical foundations. The differences were only subtle shifts in the mix of chemical components. He warned I would have to watch Wally’s legs for signs of inflammation or swelling as the dosages of Mirapex were gradually increased.

Together we read in the pharmaceutical reference book listed under the manufacturer, Boehringer Ingelheim: “MIRAPEX tablets contain pramipexole, a nonergot dopamine agonist . . . believed to stimulate dopamine receptors in the striatum [brain] . . . Pramipexole is rapidly absorbed, reaching peak concentrations in approximately two hours . . . Food does not affect the extent of pramipexole absorption, although the time is increased by about one hour when the drug is taken with a meal . . . Urinary excretion is the major route of pramipexole elimination, with 90% of a pramipexole dose recovered in urine, almost all as unchanged drug . . . Epidemiological studies have shown that patients with Parkinson’s disease have a higher risk (2- to approximately 6-fold higher) of developing melanoma [cancer] than the general population.”

Under Patients’ Information:
“Patients should be instructed to take MIRAPEX tablets only as prescribed. Patients should be alerted to the potential sedating effects associated with MIRAPEX tablets, including the possibility of falling asleep while engaged in activities of daily living . . . patients should neither drive a car nor engage in other potentially dangerous activities until they have gained sufficient experience with Mirapex® (pramipexole dihydrochloride) tablets to gauge whether or not it affects their mental and/or motor performance adversely. Because of possible additive effects, caution should be advised in taking other sedating medications or alcohol in combination with MIRAPEX tablets. Patients should be informed that hallucinations can occur and that the elderly are at a higher risk than younger patients with Parkinson’s disease.

“There have been reports of patients experiencing intense urges to gamble, increased sexual urges and other intense urges and the inability to control these urges while taking one or more of the medications that increase central dopaminergic tone, that are generally used for the treatment of Parkinson’s disease, including MIRAPEX tablets. Although it is not proven that the medications caused these events, these urges were reported to have stopped in some cases when the dose was reduced or the medication was stopped. Patients may develop postural (orthostatic) hypotension, with or without symptoms such as dizziness, nausea, fainting or blackouts, and sometimes, sweating. Hypotension may occur more frequently during initial therapy. Accordingly, patients should be cautioned against rising rapidly after sitting or lying down, especially if they have been doing so for prolonged periods and especially at the initiation of treatment with MIRAPEX tablets.”

More great things to look forward to, I thought angrily. But without the medication, Wally would end up a basket case, so I breathed in and prayed, “Over to you, God. Only you know what’s ahead.”

RED AND SWOLLEN

2009-09-20T13:58:00.000-04:00

It was Canada Day, 2004. Wally asked me about his legs. He didn’t want to wear shorts because of the way they looked. Again I was alarmed and cursed myself for not insisting he show me his legs before we went to sleep every night. His legs were swollen, the skin was flaking off and an angry redness spread from his ankles to his knees.

Luckily, the Emergency Room was not backed up and a young doctor looked at his legs within half an hour. Again, Wally was asked if he had diabetes and again he was tested for it. The result came back negative. The doctor scratched his head. When I explained to him about Wally having Parkinson’s, I also gave him the name of the drugs and the exact dosages he was taking. To my amazement, this doctor produced a new carry-round gizmo, typed in the drugs and a few moments later exclaimed, “Bingo!”

He showed me the text from a pharmaceutical reference book. The side effects of Permax produced the condition in Wally’s legs. But, he cautioned me, if we took him off the Permax cold turkey, he couldn’t predict the outcome. It would have to be his neurologist’s decision. In the meantime, ER started Wally on an antibiotic and dressed his legs. They also assigned daily visits of a home care nurse to monitor his condition.

Wally’s legs did not improve through July, August and September. In September, the neurologist made the drastic decision to take Wally off the Permax. Left on Sinemet or L-dopa alone, Wally went down to 10% mobility and the next six weeks became a nightmare. The neurologist did not want to add another agonist until the Permax was completely out of his system.

BETTER AND BEST

2009-09-19T22:09:00.002-04:00

If I don’t get information fast enough, I tend to search on my own. I wasn’t content to make an appointment for Wally with the neurologist and then wait to see what he had to say when he saw us. I wanted to know what the lack of feeling in his legs meant. I sat down at my computer, typed in “legs insensitive to pain and loss of feelings in legs” and searched. That was three generations of computers ago so I don’t have the site saved for reference now. Because I am blogging, I decided to go through the same exercise and see what pops up for your reference. It may not be the same as I found then—information and knowledge have changed over the past eight years.

Sure enough! My search this time produced myriad possibilities. I could not focus on anything specific as I did in 2001, when one disease jumped off the page to my attention: Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS). I can still relive the dread and horror I felt.

In the morning I called the neurologist. His receptionist answered and to my surprise she did put me through to him. I told him what I had found on the Internet. “Don’t go there,” he said.

“I have to. I’m the caregiver. I have to know what we face.”

“I know you want to be prepared, but I suspect it’s the Bromocriptine. Wally is on the highest dosage I have ever prescribed for a patient. He hasn’t shown side effects and I wanted to keep him off the L-dopa for as long as I could.” The neurologist cleared his throat. “Bring him in. I’ll test him.”

After he examined Wally, he said, “We’ll ease back on the Bromocriptine and introduce low doses of L-dopa or Sinemet to replace the dopamine he's not producing. Then we’ll work up the strength until we get a balance between the two.”

Because of the severity of Wally’s burn in his leg, he had to be very careful, but since he didn’t feel any pain, he was gung-ho to play pool with his buddies at the recreation center. For three months, visiting nurses dressed his wound. One warned me, “as the nerve ends in his leg begin to heal, he may be in excruciating pain.”

I was prepared but it never happened. So, the lack of feeling in his legs remained a mystery. It also meant we had to become more vigilant because if he banged himself or developed infection in his leg, he wouldn’t know.

In six months, Wally’s leg was completely healed. No scar tissue. No depression. Just a faint scar. Amazing.

My work increased. Wally spent most of his days playing pool and he still took the dog for walks. About this time, our physician wondered if it might be less of a hassle to seek a neurologist closer to where we lived. Our city neurologist's receptionist—the sergeant major as I called her—was making it difficult for our family doctor to make appointments for us.

So, we switched over to a different neurologist. He was a milder version of House. I suspected he was burnt out from lack of sleep and too many patients because he was the only neurologist in the area. After he tested Wally, he explained Bromocriptine had been around since the 70s. He suggested we start Wally on a new agonist to go along with the L-dopa: Permax.

The neurologist started Wally on low doses and worked up to what he called his “tolerance” level. Over the winter, Wally’s quality of life improved. His days smoothed out between the peaks and valleys when the meds wore off and he experienced “freezing,” an inability to move his feet. A narrow or cluttered space could still set off “freezing” but for the most part, he felt regenerated. The combination of L-dopa and Permax seemed to work until July 1, 2004. Then we were back in Emergency.

EMERGENCY AND NUMBNESS

2009-09-15T23:58:00.002-04:00

In November 2001, we were confronted with a frightening change.

Because I often worked until 2 a.m., Wally let me sleep in the morning, at least until 8 a.m. He tended to awake around 6:30 or 7 a.m., would go to the washroom in the main bathroom rather than the ensuite, get dressed and take Yogi for his walk. The weather had drastically cooled, and he turned on the electric heater in the bathroom. He also liked to read the newspaper while on the throne. That night, before we went to bed, he showed me a blister on his left leg, on the outside of the calf. I asked him how he got it and he told me he didn’t know. Wally seemed in no discomfort. I surmised he must have braised the skin, spread aloe on the blister and didn’t think about it again.

Five days later the blister broke, and I was horrified to see a third-degree burn down to his bone. “How did you do this?” I asked.

“I didn’t know my leg was leaning against the electric heater.”

I stared at him in disbelief. “For how long?”

He shrugged. “Maybe fifteen minutes.”

I was in such shock I couldn’t speak, and then I burst into motion. “We have to get you to Emergency.”

“Why?” he asked. “It’s not that bad.”

“You have to be joking!”

“It doesn’t hurt.”

“Wally, it’s beyond my first-aid capabilities. It may already be infected. We’re going . . . NOW!”

He grumbled all the way to the hospital, telling me I was making a mountain out of a molehill—“ . . . your favorite miracle, moving mountains.”

When the nurse removed the burn dressing and gauze I had wrapped around his leg, she likewise stared at the wound in disbelief. “How did this happen?”

I explained. She turned to Wally. “Are you in pain?” He shook his head. She frowned. Seconds later she returned with two doctors and two nurses. One doctor asked Wally, “Do you have diabetes?”

I answered. “No. He has Parkinson’s.”

The doctor glanced at me with irritation. “This is not Parkinson’s.”

I nodded. “I know.”

They took a slew of blood tests and carefully treated the wound. As they worked, they kept glancing at Wally’s face to see how he was reacting. He sat calmly, with no expression. Within an hour, they had the results of the blood test they wanted. The senior doctor announced, “He does not have diabetes.”

I nodded. “I know.”

“I think you had better get in touch with his neurologist," the doctor instructed. "Your husband will have to come into Emergency every two days to get the wound dressed for the next week, and then we will assign a visiting home nurse to change the dressing every day.”

I did call the neurologist. For once he answered his phone instead of his sergeant-major receptionist. After I explained what had happened, there was a brief moment of quiet on the other end of the phone. “When you take Wally back to Emergency, I want you to ask the ER doctor to do a simple test for me.”

He named it and I wrote it down.

The next time we went to Emergency, I gave the ER doctor the slip of paper with the name of the test the neurologist wanted him to do. He looked at me in a way that made me think that he thought I knew what the test was, but I didn’t. “Under the circumstances, it’s a good idea. I’d like to know why this has happened too.”

The doctor bulked up the sheets around Wally’s waist so he couldn’t see his legs. The nurse removed the dressing, while the doctor broke off a tongue depressor until he made a sharp point at one end. He gently stroked the point along his leg above the burn, and then below it. “How does your leg feel today, Mr. Toews?”

“Fine,” Wally answered.

“Are you feeling any pain?” he asked more specifically.

“No,” Wally answered.

The doctor then showed Wally the broken wooden point. “I’m going to do a little test. I’m going to prick your skin. You let me know when you feel me do it. OK?”

Wally nodded.

I watched as he picked some spots on his skin above the wound and below it, and then he made a sharp jab. Wally lay relaxed. “Remember, Mr. Toews, to let me know if you feel me prick you.”

Wally nodded again.

The doctor picked and jabbed the other leg with no reaction from Wally. I wasn’t even aware I was holding my breath for I understood what was happening. Wally asked me, “When is he going to start?”

The doctor answered, “Just give me a moment, Mr. Toews.” He ran the stick down Wally’s left ankle to his foot and jabbed his big toe. Wally winced.

“What did that feel like, Mr. Toews?”

“Like you stuck a needle into my toe.”

“Which toe?”

“My big toe.”

“Which foot?”

“My left foot.”

“Good, Mr. Toews. That is correct.”

He made the same test on the right leg down to the big toe of his right foot with the same results. Afterward, he held on to the slip of paper where I had written the name of the test and the neurologist’s name and phone number on it. “I’ll call. I’d like to talk to your husband’s neurologist.”

I prompted the doctor in an effort to get his opinion. “This is not Parkinson’s.”

“That’s right. It’s not.” And he offered nothing more.

STYLE AND PERSONALITY

2009-09-14T23:46:00.002-04:00

After Wally’s diagnosis in January 2000 and our first years living in Wilmot Creek, his quality of life marginally changed as his daily dosage of bromocriptine crept up. He walked the dog every day, joined the pool club and was soon playing in all the tournaments. He even played some tennis with his longtime buddy Jack, who also had Parkinson’s.

Jack, who went on Sinemet (L-dopa) immediately, developed a routine where he followed the daily recommended exercises for people with Parkinson’s and danced with the ladies every weekend. He didn’t care if his partners were young or old, as long as they danced. His right hand noticeably trembled except when he played tennis or his electric keyboard. He maintained a straight posture, while Wally grew more stooped.

Jack invented a stretching machine for Wally to use to help him straighten his shoulders, but on his own, Wally never used it. Occasionally Wally’s left leg shook, but most of the time his tremors were invisible. He never enjoyed physical work outs. “Work” was the key word. For him, tennis and golf were fun, and they gave him plenty of exercise. His attitude never changed after he developed Parkinson’s.

In the meantime, I was putting in crazy hours working from home. I was afraid to turn down a magazine assignment or editorial project in case I would lose the business. I went through many deadline marathons where I barely slept. We often ate out because when I’m working 60- to 70-hour weeks I lose interest in cooking.

Wally’s very social. He enjoys being around people and interacting, especially in competition, though he would never call himself a conversationalist. He expected that I was also social. I do make public speeches when needed and jump into conversations that interest me, but he never realized I don’t seek to be with people until we moved to Wilmot Creek. I love the sanctuary of my home and working from home fed my introspective nature.

If Wally never had Parkinson’s, I doubt we would have questioned our styles of respite. When he worked late selling real estate or played in tennis tournaments, he never had to feel guilty because I didn’t need him home to entertain me. I welcomed my alone time because that’s when I pursued my dream of writing novels. Many things we did together as well. We were partners on the same path, holding hands but not clinging. We were independent and free, yet spiritually joined. We enjoyed unconditional love. I can’t remember a night when we didn’t go to sleep laughing because of Wally’s one liners. We welcomed life, and we enjoyed it. In our home, we never dwelled on problems. We figured out solutions and moved on. Life was always a forward motion. Consequently, neither one of us is good at remembering what happened yesterday, so we don’t hold grudges. Not usually.

But, as Wally’s Parkinson’s progressed, he began to resent my computer. What he really meant was my time at the computer because it’s time we didn’t have together. As he began to lose more control of his life, being together became increasingly important to him.

SIGNS AND ATTITUDE

2009-09-13T16:24:00.004-04:00

Thinking back to the early 1990s, it’s easy to track the signs of Parkinson’s disease developing. Hindsight always makes us smarter, doesn’t it?

I even remember peculiar snippets in the late 80s that may have been warnings of the onset. Wally craved Tim Horton donuts, the sweeter the better. If I had ever known how many he was consuming per day, I would have been alarmed just for the cholesterol levels alone. And salt. I’ve never seen anyone sprinkle clouds of salt on his food the way Wally did, and does. Again I attributed it to his playing tennis almost every day. He needed salt to replace his sweat, but in truth, I rarely saw him sweat or ‘glisten,’ even on the hottest days or after his longest matches.

At some point during this period, his right forefinger began to tremble, but he never mentioned it to me. I don’t know if he told his doctor either. Tennis buddies noticed it was easier to beat him, but said nothing to me or to Wally. One thought his game was getting better and was proud he could beat Wally. Another noticed his serve didn’t have the force it once did, though Wally still won games because he could keep his opponents running. Neither one of these buddies said a word to me until years later, after he had been diagnosed with Parkinson’s. Their playing hadn’t improved beyond his as they thought then; his game had been “off” for physical reasons, so their wins didn’t feel so triumphant.

I was deeply absorbed in writing a novel and never noticed signs of depression until one day his broker called me because she was quite concerned about him. I felt terrible that I hadn’t noticed any changes. We both assumed that the depressed real estate market and the switch to computer technology frustrated him. He was working as hard as ever but not showing the kind of results he normally produced. That would discourage any top real estate agent, and Wally had reigned for a number of years in Toronto.

As I observed him more closely, I realized he wasn’t multi-tasking through the day. Normally he balanced his routine between cold calls for new listings and research for buyers’ preferences before taking clients out on prospective house tours in the afternoon or evening. Often I went with him to agents’ Open Houses. Now he seemed to work more methodically and slower, a task at a time.

It’s easy to blame aging, but is it really? My father was 31 years older than Wally, but he was still consulting for mining companies in his late seventies. In my view, Wally was still a pup compared to Dad.

I noticed these things, but they didn’t sink in until one day, in 1995, we were visiting my Dad, and my brother took a picture of Dad, Wally and me. Days later, when I looked at the photo, I was shocked to see Wally standing shorter than Dad. Wally was six feet. Dad, five-foot-eleven. That couldn’t be right. Since Dad was so much older it made sense that he would shrink, not Wally.

Wally is the baby of three brothers, each nine years apart from the other. But, at age 63, Wally looked older than his eldest brother eighteen years his senior, just as in that picture with Dad, he looked older than him. In my mind, it didn’t make any sense. Yet, when Wally returned from his annual physical exam, he was declared as healthy as a horse. Everything was normal, including his cholesterol levels. I decided I was being a worry wart over nothing and let it go. My conclusion: Everyone’s different and we can’t compare them.

PITY AND SELF-PITY

2009-09-12T15:42:00.001-04:00

Our first neurologist told me I would have to be as tough as nails. He explained that people with Parkinson’s give up easily—partly because Parkinson’s creates a depressed state of mind and partly because Parkinson’s robs the person with it of energy. It’s easier to sit and let the world pass by than to try and battle the discombobulating, shaking or hammer-shot reflexes that throw each one with PD off balance.

In Oprah Winfrey’s recent interview with Michael J. Fox on television, she said a caregiver had to be a rock. He corrected her and explained that his wife Tracey Pollan was very fluid. She constantly adjusted to his changes and needs. She was not like a rock at all.

I think Michael and Tracey are a unique couple, even if he never developed Parkinson’s. Although I can picture him arguing that having Parkinson’s changed him because he came to appreciate his family’s love and to live each moment with them to its fullest, I believe his life with Tracey would still have evolved into something special for them because of their mutual interests, talents, styles and personalities.

Had he not had Parkinson’s, he speculates his job would have consumed him and he would have missed out on the time he’s been given with his family. Possibly. When we’re healthy, we take it for granted. We forge ahead, sometimes selfishly. But no one goes through life untested. If his disease didn’t challenge their relationship, something else would have.

As couples, how we evolve depends on our inner spirit, on our approach to problem-solving, on our backgrounds, on our commitment to each other and on our faith.

When Michael first learned he had the disease, he hid it from his co-workers and the public. He went through a long period of denial and often drank himself into oblivion, until he faced the disease and acknowledged it. This struggle is a personal experience for each individual diagnosed with the disease. But, once he went through that phase, he formed his own philosophy for handling it, and he and Tracey’s deep love influenced their way of communicating with each other. As a result, they grew more deeply in love. Oprah calls their relationship a “spiritual union.”

They are an inspirational example, but what has worked for them, might not work for you, or for Wally and me. And as I talk about Wally and me, our way of handling Parkinson’s will not be yours. Every situation is as unique as each individual’s set of symptoms. Not all couples grow closer together on this PD journey. Sometimes the stress kills caregivers before their PD partners. And though we make the promise, “you will never go into a home” to our loved one with good intentions, we cannot always keep that promise.

One approach is common to all, however. If you pity the person you are caring for with Parkinson’s, you enable his or her self-pity. How can I say that? Why wouldn’t you feel sorry for someone with PD? It’s a no-fun disease.

Pity is like pride. It brings out the worst in us, instead of the best.

I’ve seen well-meaning people change the way they see the person with PD. They feel sorry for them and start doing things for them instead of letting them carry on in their own way at their own rate. In other words, they pamper them. Sometimes we pamper because we feel guilty that our loved one has the disease and we don't. But, as soon as we start doing things to make it easier on those with PD, we rob them of their independence and dignity. There is such a thing as doing too much or being too helpful.

When Wally has been down on himself or indulging in what I call a self-pity party, I tell him, “I am sorry you have Parkinson’s, but I am not sorry for you. You are not my child. You are my husband. I am not dressing you. I am not feeding you. You will do everything for yourself. It will just take you longer. You will retain your independence for as long as you possibly can. Is that understood?”

He nods. And then I hug him. “I love you, you know. The neurologist said I would have to kick you in the pants now and again, but don’t make me do it too often.”

REFERENCE:
http://www.oprah.com/article/oprahshow/20090319-tows-michael-j-fox

YOGI AND LOCATION

2009-09-10T00:40:00.003-04:00

Looking for a retirement home distracted our inner dismay at this disease invading our lives. We toured through 25 houses at Wilmot Creek, but no matter what house we looked at, Wally had already decided on his choice. It met his criteria for location . . . location . . . location, and it was perfect for Yogi and me, in his view.

The real estate agent finally showed us a home on the sixth hole of the Wilmot golf course that I liked, and it was already decorated to my taste. I could fit our furniture and it had a fireplace. The view was lovely, but not private. I presented my reasons for preferring this house to Wally. He listened and agreed but suggested perhaps we should look some more. He didn’t like the closeness of the neighboring houses, and he was concerned that golfers on the golf course would set off Yogi’s barking. So, we kept looking, but after every trip through Wilmot Creek, he would drive us by the house he wanted. A friend who knew the owners told Wally that they had taken the house off the market but were willing to sell privately if they got the right deal. Wally beamed, and I thought, “Shucks! I’m goobered.”

The friend arranged with the owners to show us the house. Inside it was filled with light from the west, but I saw problems with the configuration of the rooms. The location was ideal for a writer. The back of the bungalow sat overlooking a creek fringed with a canopy of willow trees. You could hear the peaceful gurgles of water skipping over the stones. It was a private sanctuary, and the property was wide enough that Yogi wouldn’t have to be tied on a leash to a tree or to the end of the porch.

As soon as we got home, I drew layouts of the house because my eye “knew” we could not fit our furniture, and it did not have the one thing I was determined we were going to have for our retirement home: a fireplace. Wally bided his time. He had decided what he was going to pay for it, while I thought of design and décor. We went through it three more times. Of course Wally could sell iceboxes to the Eskimos. His defense of the location was winning me over. When it reached the point where he was certain he could get the price he wanted, I began my negotiations. I wanted my fireplace, and since the room designated for my office was much smaller than what I already had, I would need new office furniture. Tick. Tick. And done.

We got the house under the conditions each of us wanted, and the only thing we had included in our thinking to accommodate his Parkinson’s was that it was all one-floor. We never measured a doorway. We did not consider whether either bathroom could be refitted for wheelchair accessibility. We never imagined what would happen if we had to switch to twin beds with a three-foot aisle between for a wheel chair. And worse, we never thought about the day when we would have to build a ramp for wheelchair accessibility into the house. The front of the house perched on a low hill that slid down to the street. You stepped down to the concrete floor of the front porch, which led to stone steps and a rock garden that curved down from the entrance to the driveway that continued slanting downhill.

If you’re thinking, “Were they crazy?” The answer is, “Yes.”

You are looking at a classic example of big-time denial. We were partners in love and partners in denial. And when we first moved into Wilmot Creek, we were happy. The air was fresh and clean. We slept like babies. I no longer suffered from sinus headaches. We went for walks along the bluffs. Yogi made friends with our resident mother fox. The nearness of the lake moderated the temperature in summer and winter. We didn’t experience extremes of heat and cold. In fact, we barely had snow. Our first Christmas was green. Except for the pills Wally had to take, we succeeded in forgetting Wally had Parkinson’s.

COOL HOUSEPLANS FOR WHEELCHAIR ACCESSIBILITY
http://www.coolhouseplans.com/wheelchair_house_plans_home/index.html?mode=fl1#35706

FINE AND SO-SO

2009-09-09T00:35:00.009-04:00

Social workers will tell you that it is unhealthy not to talk about the Parkinson’s diagnosis with each other. On the website for the Michael J. Fox Foundation for Parkinson’s Research, there is a section with this advice for caregivers:

"Like any other important development in the lives of two people close to each other, whatever the relationship, a PD diagnosis should be discussed as openly and honestly as possible. Don’t fall into the trap of considering your own concerns as a caregiver less important than those of your person with Parkinson’s (PWP). A Parkinson’s diagnosis is a life-changing event for everyone affected. Talking openly about what you are experiencing can help prevent resentments from surfacing further down the road."

This advice makes sense, but it doesn’t speak for every individual. Wally is not macho, but he did grow up in a Mennonite home where he was not encouraged to brag or whine. Before the onset of PD, he was an amateur A-ladder tennis player. When he came home from a game, he would never announce, “Well, I beat so-and-so,” or “What a terrific game we had!”

When I didn’t think first and simply asked, “How was your game?,” his answer would be, “Fine.” This always forced me to ask, “Did you win or lose?” “Win.”

If his answer was, “So-so,” and I asked, “Did you win or lose?,” you can guess his answer: “Lose.” Eventually I learned what “fine” and “so-so” meant and didn’t have to ask the second-stage question. I call this form of communication short-tongue.

Wally is a fundamental Christian. His faith, private. He has never questioned his childhood teachings. He does not believe in asking God for things, such as money, a house, a car or a briefcase, but in moments of need he will ask the Lord for the wisdom to make the best choice, or the strength to endure, or the patience to understand. He follows the basic rule: God helps those who help themselves. He has worked hard and provided well over his lifetime. He lives for today and never worries about tomorrow. His love has been steadfast and unconditional. Even in my worst moments, and the Lord knows I’m the epitome of imperfection, he has not complained. He’s no saint, however. He’s quite human with a quick sense of humor. At times, it’s difficult to tell the difference between his tenacity and his stubbornness. Both test time and patience. Not his. Mine.

So, it is no surprise that he has never asked, “Lord, why me?” Neither has he blamed God for his having Parkinson’s, not even in his most frustrated and angry moments. “It’s not God’s fault.”

At first, we both had a ‘go-forward’ attitude. When you were at the bottom of the barrel, there was only one way back out—UP. Thus, I learned as much as I could at the time about Parkinson’s and the drug treatments, and he learned to compensate for his growing weakness and sense of imbalance. I told him what he needed to know when he was ready to hear it, and he asked me for help only when he couldn’t do something for himself. I let him struggle on his own because that’s what he needed to do, but sometimes in the morning, I swear our Toy Pomeranian—Yogi—crossed his legs waiting for Wally to dress and take him outside. I could have done it, but that was their routine and I was not interfering. There would come a time when they could not enjoy their morning exercise together.

REFERENCES:
Guide for Caregivers: http://www.michaeljfox.org/living_patientsAndCaregivers_guideForCaregivers.cfm
Research Viewpoints:
http://www.michaeljfox.org/research_viewpoints_researcherAreaPositionPapers_biomarkers.cfm

SHOCK AND SADNESS

2009-09-08T00:33:00.002-04:00

Even though you suspect something is wrong, it is always a shock to hear the words that confirm it. When the first neurologist we visited pronounced Wally had Parkinson’s disease (PD), my first reaction was to hold my husband's hand. He took the news calmly. He had experienced enough symptoms to know what to expect, but he had never shared either fear or concern with me until I raised my own questions. Until then, his approach was: if you ignore it, it will go away. Then if it doesn’t go away, you deal with it later.

Later had arrived. He wasn’t interested in learning about the disease. He had memories of his mother suffering with PD for years. He just wanted to live with the best quality of life he could manage. Besides, he knew me. He didn’t need to learn about the disease or its progress because he could depend on me to do that. The neurologist gave positive advice to Wally, even joked about some medications causing hallucinations—talked about one patient who saw his dead wife’s head travelling along the top of the sofa. “Now, if you see strange things, or hear voices other than your wife’s, you need to tell me about them right away. We’ll have to look at trying a different medication.”

While Wally was getting dressed following his physical examination, the doctor told me it would be my responsibility to learn about the disease and the drugs prescribed. He gave me a list of web sites to visit. “This is not pleasant reading so do it when you are alone. You need to read about all the possible side effects. As the disease progresses, we have to increase the dosages, but there comes a point when we can’t strengthen the medication any more. All these drugs are toxic, and in the later stages, prescribing higher dosages only makes the drugs turn on the patient. The resulting side effects can be worse than the symptoms of the disease itself.”

To Wally, he said, “I’m going to give you less than perfect days so that later on, we can prevent the onset of uncontrolled shaking—dyskinesia.”

The first medication he prescribed was bromocriptine (Parlodel), a dopamine receptor agonist. The agonist enhances the transmission of electrical energy between the neurons to correct the fouled up connection caused by the dimished dopamine the brain produces. The neurologist delayed prescribing the dopamine replacement, levodopa, for another year. His purpose was to prevent the onset of dyskinesia for as long as possible, but a recent study called the Cochrane review has found no evidence to support this claim.

As I browsed through the web sites and read about Parkinson’s medications and progressive disease symptoms, a deep sadness strangled my heart. I refused to let myself cry, and the weight of my sadness increased over the next three months. We didn't talk about the disease. Instead, we focused on living each day as much as possible. Wally was taking his pills. His balance had improved so he could return to playing tennis, and he was a happy camper. I didn’t nag about his retiring, but he couldn’t multitask as he needed to do to remain the successful real estate agent he had been. I looked ahead to moving into a one-floor bungalow that could be adapted for reduced mobility and redecorated the front entrance in preparation to selling our house. I was just starting to repaint the main hall when Wally came home with a MLS listing agreement in his pocket.

“We’re going to move,” he announced.

“Really? To where?”

“Wilmot Creek.”

This was the patch of paradise I dreamed about 40 minutes east of Toronto on the shores of Lake Ontario. “But I haven’t finished repainting the house.”

“Leave it. The buyers will paint it their own color anyway.”

Within two weeks we sold the house and were planning the next stage of our lives.

REFERENCES:
Dyskinesia: Difficulty or distortion in performing voluntary movements, as in tic, chorea, spasm, or myoclonus. The term dyskinesia may be used in relation to Parkinson's disease and other extrapyramidal disorders. Dyskinesia can occur as a side effect of certain medications such as L-dopa and the antipsychotics. The word dyskinesia (dis-ki-ne´ze-a) is logically derived from two Greek roots: dys-, trouble + kinesis, movement = trouble moving.
Bromocriptine: http://www.medicinenet.com/bromocriptine-oral/article.htm http://www.drugs.com/pro/bromocriptine.html
Cochrane Review: http://en.wikipedia.org/wiki/Cochrane_review

FEELING DISCOMBOBULATED

2009-09-06T20:16:00.006-04:00

When Wally first tried to help me understand what Parkinson's was doing to him, he said,"I feel discombobulated."

Not only was his balance affected, he also experienced a sudden reflex motion that reeled him backward. It was like being hit in the chest with a giant sling shot.