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

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

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

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

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

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

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

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

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

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

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

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

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

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.