EULOGY for WALLY TOEWS May 9, 2012

SLOW AND EASY

This was Wally’s mantra. He was an old soul. He understood the principles of love and faith without questioning or testing them. Wally believed Jesus was his savior, he prayed every day of his life, and before he died, he read the Bible from cover to cover three times, while he could still hold his Bible in his hands. Despite his personal belief, Wally never preached. He lived by example and my strength and faith is his gift to me and to everyone whose life he touched. He never asked any of us to be anything other than who we are. He never set his goals for us. He encouraged us to set our own. Wally was proud of us all, and he made sure we knew that before he died.

SLOW AND EASY

Wally was a loving, gentle, humble man. He never bragged about his achievements, either in real estate or on the tennis court. His only signal that the day had gone well was his happy, tuneless whistle as he came through the door. We had no idea how many trophies Wally won through his life until Trish came across a box filled with them. Indeed, he did not recognize what he had done in his own life to make a difference in ours. He needed us to explain to him what a gift he was to us.

SLOW AND EASY

Wally was no saint. He was down-home human with a delightful sense of humor. For years he would come up with his funniest lines just before we went to sleep. This quirky humor is something the Toews brothers share. You haven’t lived until you’ve heard one of Hank’s blonde jokes. Hank, Jean, Fran, Henry and Margaret Toews. Trish, Don, Jesse, Amanda and Megan Harton. Because of Wally, our two families are now indivisible. Not because he demanded it or expected it, but because he let it happen in its own time. He loves you all and so do I.

SLOW AND EASY

Wally loved children. He saw them as unique souls. He wasn’t interested in molding them into what he thought they should be. He wanted them to discover what was in their heart of hearts and to be the best they could be at reaching their own dreams.

SLOW AND EASY

Wally adopted all his children. First Billy and Paul, his sons from his first marriage. Billy has since died and Paul cannot be with us today because he is looking after his mother and his family, but Paul is proud to be Wally’s son, and Wally has always been proud of Paul, who is quiet but cuts us up with self-effacing wisecracks that remind us of Wally. Paul has raised his son, Paul Jr. and is raising his step-son Ambros with the same love and respect he received as Wally’s son.

SLOW AND EASY

Then Wally met me and adopted Trish when we were married. Trish liked Wally from the moment she met him. He didn’t try to charm her any more than he tried to charm me. That was his charm. In many ways they are alike, in the ways they think, in the way they express their feelings – with deeds rather than words. When Wally adopted Trish, she finally had the family she longed for and a Dad who loved and respected her. Wally was always proud of his children, and when Trish and Don met and married, Don wasn’t just his son-in-law. Don became another son, close to his heart.

SLOW AND EASY

The greatest joys of Wally’s life have been his grandchildren. He had never held a baby of his own in his arms until he held his grandson Jesse – very gingerly at first but gradually with more confidence. And then two little girls – twins – Amanda and Megan arrived. And he could enjoy their growing up as he had missed most of Trish’s early years. His gift to them was to challenge them, whether they were aware of it or not. And they had to win any game they played with Papa honestly. He never let them win, and later, when it became difficult for him to play games with them, he still expected them to win honestly and not to make it easy for him.

SLOW AND EASY

One of Wally’s greatest delights was taking our nephews, Stephen and Kevin, to Maple Leaf games when they visited us from Kingston because the two boys were enamored with hockey and baseball and devoured Maple Leaf and Blue Jay history. To their surprise, Wally could match and sometimes out-trivia them. He thought his niece, Sheri-Lynn, looked like Princess Diana, especially on her wedding day where he spent much of his time becoming the pal of Stephen’s first born, Brodie. By the time Sheri-Lyn’s daughters – Kelsey, Hunter and Brooklyn – and Stephen’s sons Brandon and Jordan, and Kevin’s son Braden came along, he could no longer travel even short distances so he missed their growing up years. It is during this time, their father and my brother, Chris, visited us at Wilmot Creek. Hockey and baseball dominated their conversation except when we were playing a serious game of Rummy Cube. My brother learned how Wally plays to win. Wally loves you all and so do I.

SLOW AND EASY

Wally asked questions that many of us would cringe to ask for fear of imposing on another’s privacy. Instead he asked to listen, to learn and to understand, and no matter how many times he might hear the same information, he told me he always learned something new. He was a keen observer and understood body language. These skills made him a good strategist as opposed to manipulator.

SLOW AND EASY

Real estate was the business he loved. He could be his own boss. He most enjoyed helping first-time buyers. Throughout his more than 35-year career, he won many certificates, plaques and awards and was the original patron of Property Virgins in his selling style.

SLOW AND EASY

Of all sports, Wally loved to play tennis and the horses. He was a smart player – both on the court and at the track. He loved to bet on long shots and he loved the competitiveness of racing, to watch the horses train and gradually beat their own records. Often, in tennis, he lost the first set while figuring out his opponents’ weaknesses and then took the next two sets to win the game. When Parkinson’s affected his serve, he never let on and for a while he succeeded in faking it.

SLOW AND EASY

Animals – wild and domestic -- felt safe with Wally. When he was a boy, chipmunks, squirrels and even foxes would come up to him. It was his patience. He stayed still and waited and eventually won their trust. One night at midnight we were driving along the street approaching our condo and he spotted a hamster running wild in the park. He had eyes like an eagle because I never saw the little thing. Wally got out of the car and a few minutes later he brought him over to me. I couldn’t believe the soulful brown eyes staring back at me. The hamster seemed to understand he was safe with us. We put him in my purse until we got home and could fix up a cage for him. One of our cats, Scooter, learned to sit up on her hind legs so she could watch the hamster spin his wheel.

SLOW AND EASY

Wally seemed especially connected to our horses. Those that misbehaved he observed and figured out their KEY. One of our fillies would rear and shy away when approached from the left side. She had something called moon vision – everything loomed larger than life so if you approached from the left, she thought you were a giant. Wally figured out she needed the upper half of her stall door opened so she could look up and down the barn. Her skittishness disappeared, and she never placed worse than third through her racing career.

SLOW AND EASY

A Toy Pomeranian puppy, no bigger than a pound of butter, captured my heart and I brought him home. Wally was shocked. We had agreed on no dogs because when we retired he wanted us to travel and enjoy ourselves, but I sensed something very wrong with Wally and knew we wouldn’t be traveling as he hoped. He was so angry he didn’t talk to me for two days, but I knew in my heart of hearts this was the right thing to do. By the end of two days Wally had named the puppy, Yogi, and from then on our lives evolved around him. At one point a friend who was a dog trainer came to visit and observed who ruled the house. Yogi was so smart he obeyed every simple command she taught him immediately, but for Wally and me, he refused to co-operate. When our friend left, Wally said to me, “I don’t want an obedient dog. I want a happy dog.” My response to that – “it would be nice if he had manners.” Wally replied, “He does have manners. We just have to find the KEY.” A few weeks later I had to go away on a business trip. When I returned, Wally and Yogi had worked out their own communication system. If Yogi laid down on his side and lifted his right rear leg, he needed to go outside. If he sat up and begged, he was asking for water. If he danced in a little circle, it meant he was hungry and wanted to be fed. Yogi was Wally’s dog, and as Parkinson’s took more of him away from us, Yogi would lie by his chair and when his voice was so soft I couldn’t hear him, Yogi would come to get me. The only problem was that thereafter, whenever anyone talked to me, he barked to let me know they were speaking to me. Yogi died suddenly last year and there is comfort in thinking they are together now getting into some kind of mischief as they roll along in his golf cart over the rolling hills of heaven.

SLOW AND EASY

This was the title we gave our blog for the caregivers of people living with Parkinson’s. Wally encouraged me to write it to help others fighting this disease. Over time we linked up with many sufferers and caregivers in the United States and Canada, from England to Norway to Africa to Australia and they began to chat amongst themselves. They shared their symptoms, they shared their experiences, they shared their fears and their pain, and they shared what helped them so they could help others in the group.

SLOW AND EASY

Our blog won an award, and as a result Wally was invited by a scientific foundation in California to participate in the largest genetic study ever undertaken for Parkinson’s Disease in North America. They were looking for 10,000 volunteers. Wally was their 6,900th volunteer. Within six weeks we received the first results, and we announced them on the Parkinson’s chat group on Facebook where we explained what had been learned so far and how the more volunteers that joined the project, the better chance everyone had of finding a cure for this disease. Many group members signed up for the project. So far, the number of volunteers has increased to 7,500. After Michael Fox received his genetic results, he partnered his foundation with the genetic study so that the two groups are now combining funding to design a cure. Those diagnosed with Parkinson’s today will not suffer the horrible adverse effects of the drugs prescribed for Wally, Michael and Ali, and their peers.

SLOW AND EASY

When the Parkinson’s chat group heard Wally had died, the moderator of the group who is a published poet in England – Rob Bristol (He too suffers with Parkinson’s) published this tribute and expressed for me my final thoughts:

A TRIBUTE TO WALLY, HUSBAND OF BONNIE TOEWS,

WALLY LOST HIS BATTLE AGAINST PARKINSONS TONIGHT

SLIPPING AWAY



If I could walk once more with you,

I know what I would choose to do,

We would walk down memory lane,

Relive our loving years again.

......

Together, we'd walk arm in arm,

Remembering summer days of charm,

Times we laughed, things we said,

Nights we cuddled in our bed.

......

Recalling how we loved the beach,

Chasing dreams beyond our reach,

How we held each other tight,

Safe together, through the night.

.....

Years pass by, love grows strong,

Locked in hearts, our special song,

But as the night returns to day,

The Lord has taken you away

.....

When looking back at all we shared,

The love that proved we both cared,

I say these words to you tonight,

In His garden, we'll reunite.

.....

Forgive me should I shed a tear,

In my heart, you're forever here,

So my love, my friend, my light,

It's not goodbye, just goodnight...



by Rob Bristol's Poetry on Facebook, Monday, April 30, 2012 at 11:54pm

Wally's journey on earth ended April 30, 2012

My dear husband passed into the arms of God last night, April 30, 2012. No one could believe his tenacity, but he lived long enough to contribute to a DNA study that eventually will change the way Parkinson's disease is treated. A dear friend, Rob Bristol, has written this poem in commemoration, and this is how I would like Wally to be remembered: SLOW AND EASY signing off.



Rob Bristol's Poetry



SLIPPING AWAY



If I could walk once more with you,

I know what I would choose to do,

We would walk down memory lane,

Relive our loving years again.



Together, we'd walk arm in arm,

Remembering summer days of charm,

Times we laughed, things we said,

Nights we cuddled in our bed.



Recalling how we loved the beach,

Chasing dreams beyond our reach,

How we held each other tight,

Safe together, through the night.



Years pass by, love grows strong,

Locked in hearts, our special song,

But as the night returns to day,

The Lord has taken you away



When looking back at all we shared,

Love protected those who cared,

I say these words to you tonight,

"In His grace, all reunite".



Forgive me should I shed a tear,

In my heart, you're forever here,

So my love, be free of pain,

For I know we shall meet again...

                           Rob Bristol

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.

MEDS AND CHECKLISTS

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

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

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

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

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.