"Find Your Passion and Go For It."

"Just because you have PD doesn’t mean it is the end of the world... I have never looked back."
 

Read Gunnar's FULL STORY

Stories of Hope

You or someone you know has recently been diagnosed with Parkinson disease. When hearing the words, “You have Parkinson disease” the thought may be frightening. You may feel as though you are alone in dealing with your new diagnosis. These stories written by people with Parkinson disease or their spouses were included to put a face to this new challenge in your life.

ENOUGH’S ENOUGH
 

Parkinson Alberta Society Board Member, Trish Clark takes action against Parkinson Disease. Here is her inspiring story in her own words


By Trish Clark

I wrote this a number of years ago but essentially nothing has changed!

“Gee you look good Trish!”

“You don’t look like you have Parkinson’s.”

“Nobody would know you have Parkinson’s.”

“Are you sure you have Parkinson’s?”

It was this last comment that made me decide — okay enough’s enough!

I have Parkinson’s! I know I have Parkinson’s, even if the rest of the world doesn’t. I am not sure how one tells if you have Parkinson’s or not but people seem to think I should have a sign around my neck!!
I am asked again and again, “How do you feel?” and “How do you manage to look so good? Answer? I work at it!!”

When I retired from teaching, immediately there was an improvement in my symptoms. I love teaching, kids are my passion but the stress and the workload were telling on my health so I asked for and received a long-term disability. I miss the students! I miss my colleagues and my friends! BUT I know I feel better (and so everyone tells me, I look better).

Do I sit at home on the couch and watch the soaps? Definitely not!! I have always been active, teaching Physical Education and coaching, playing senior women’s basketball (one or two years too many!!) and running. I was not going to quit now. That is not quite correct. When I was first diagnosed with Parkinson’s I did stop running. I had been marking off approximately seven or eight kilometers a day and I stopped cold! I had Parkinson’s I couldn’t run anymore!! Wrong! Most definitely wrong!!

However, I found out that sitting at home was not for me — I had to keep active. So back to my first love, running. It was hard getting back into it. I now call it jogging; I am not up to the speed I used to manage. How much back into it am I? I run now every other morning, with my faithful running companion Hobbes! (our wire fox terrier) Sometimes we run five kilometers, sometimes only three, it depends on how I feel. If I am not awake by 6am Hobbes sits quietly by the side of the bed staring at me until my eyes open, hypnosis is one of his favorite methods. Then he races out of the bedroom and waits by my runners! The mornings we don’t run, we walk. If for some reason or other we don’t manage to start our day this way I feel like something is missing all day!

Fitness is a habit for anyone and especially for me. Sure, some mornings it is harder to put on my runners than it is to run. My feet cramp and my fingers don’t want to tie the laces, but the results are more than worth the extra few minutes and the extra few whines it takes to get ready. We hit the trails no matter what the weather! My best present last Christmas was a running shirt, which is guaranteed to keep me warm when the temperature registers –20/25 degrees!! Know what? It works! Last summer I worked back up to a long run once a week of ten kilometers. I was very proud of myself. This spring I am going to run in the Kananaskis Fun Relay with friends from school!

I don’t do this without support and lots of encouragement. When I ran in SuperWalk I ran with three or four others talking me through it. I ran alone in the mornings, but only physically! My kids always check up on me. Shaun phones from Vancouver, usually when he is running, to see what I clocked that day! Jenn phones from Edmonton and always asks how my run was. Barry is still in bed when I get home but I know he looks at the clock to make sure I am in within his time limits!!! My doctor charts my progress in my file!! I think my Parkinson’s to him is on a graph of my distances! It is a positive way for me to stay “normal”. To hold off any gains that Parkinson’s may be making. I honestly believe that by staying in shape I am staying level. One of these days I may have to stop. Stop running, but not stop doing something! I expect I will be out on the trails one way or another, eventually with a cane or even with a walker. I have no intention of letting this disease rule my life. By staying active and staying positive we, Barry, Jenn, Shaun, Colin and I are more able to cope with the day-to-day experiences we have living with Parkinson’s.

I may not beat it but I will sure give it a run for its money!!

 


Find Your Passion and Go For It
 

Gunnar Henricksson was diagnosed April 1, 2004, April Fool’s Day. Today he is still a busy guy. He is working, volunteering, and he just returned from an interview by third year Pharmacy students, who now know a whole lot more about Parkinson disease and the Parkinson Alberta Society. He works hard to deliver his message — " tell your patients who come into your pharmacies to seek help through the Parkinson Alberta Society. It is the best place to get the support you want." Gunnar's story was submitted by Judy Deverill, Client Services Coordinator, Edmonton Office who believes Gunnar may yet challenge the current record. It wouldn’t surprise us.


By Gunnar Henricksson

My wife had noticed that my right thumb trembled and shook, so she suggested I go see the doctor. That was the beginning of my new life. A life with Parkinson. My family doctor examined me, and immediately referred me to a neurologist. By that time my whole right arm was shaking, and looking back I am sure that she knew but did not want to make the call. As soon as Dr. Brad Stewart saw me, he knew what it was. It was Parkinson’s.

He told me to go home...get drunk…and said “if the shaking goes away it is Parkinson’s.” It was Parkinson’s. The best thing Dr. Stewart did was to refer me to The Parkinson’s Society in Edmonton. I was scared. I went into their offices and met with Mary. Mary educated me, and told me it was not the end of the world, I was not going to die. Mary gave me hope.

She took me to the Movement Disorders Clinic which at that time was in the General Hospital. There I met a gal by the name of Kris who interviewed me, and found out I lifted weights. Kris encouraged me to keep doing what I was doing and to work on my legs every time I go to the gym. When the legs go, then you are in trouble. I hated doing legs. However I did as I was told. In November 2006, I was having lunch with a friend of mine who was a weight lifting coach. He asked me if I had ever checked out the Alberta Power Lifting Website. I had never heard of it before. When I got home, I checked it out. I was curious. What would a 50 year old who weighs 260 lbs have to lift to be respectable in this sport?

I found out that the squat record for 50 year olds….was 176 kilos/385 lbs. At the time I was doing about 330 – 340 lbs. I quickly phoned my friend and asked if he would coach me. Perhaps we could take a run at the record. It took me a month and a half to convince him I was serious. So, in February, 2007 he began coaching me. By July 2007, we had set a new squat record at 177 ½ kilos/ 391 lbs. Everyone wanted to coach the “old guy that shakes!” This was a great bunch of people!!!

February 2008, I was in a tournament in Edmonton at the University of Alberta and we were able to raise the squat record to 195 kilos /429 lbs. In the same tournament I was able to set the dead lift record 202.5 kilo/ 445 lbs. Since then we have raised the squat record to 220 kilo/ 482 lbs. Today, the squat record is held by a lifter in Calgary at 525 lbs. Recently, July 2011, I was in the provincials in Calgary competing in the bench press only, and was able to do 160 kilo/ 352 lbs. I finished 2nd place. I had always been scared to get back into competitive weight lifting after I left high school. I didn’t think I was good enough. Once I was diagnosed, I was also worried about how the other lifters would react to me lifting and having Parkinson’s. To my surprise, many of them told me “I inspired them.”

When I was diagnosed my first thought was “is this all there is for me now?” I was disappointed. There were so many things that I wanted to do, thing I had just kept putting off. Competing again in weight lifting was one of them. My coach entered me in the provincials and encouraged me to go and have a good time. Just because you have PD doesn’t mean it is the end of the world and you quit striving to do stuff. I have lifted more weight with PD than I ever did in my prime. I am competing against able bodied lifters, and there are no concessions made for me. I have never looked back.

Find your passion and go for it. I did!
 


Live for Today. Let Tomorrow Take Care of Itself.
 

In August 2011, Beth Metcalf, Client Services Coordinator in the Medicine Hat Office, submitted Bill Thompson's name, a PAS volunteer, for the Senior of Distinction Award in the category of Community and Leadership. Bill won for the Leadership category. He received his award on October 4 at the Valley View Age Care Facility. Here is his story.

By Bill Thompson

Parkinson disease (PD) is a result of the brain not producing enough dopamine; a chemical that enables so called involuntary movements which are movements that you don’t have to think of doing. I like to compare it to a light switch making poor contact and causing a flickering to occur.

My first noticeable symptoms were in 1992. I had some slight shaking of foot, arm and hand. In 1993 a worker I was with noticed that I was walking with no arm swing. He asked if I had hurt my arm, I replied “no”. With these changes it became more apparent something was wrong and I needed to find out what was happening.

When I went to see my doctor I was told “sounds like old age”. Well I was a long way from that at age 52! Upon hearing that I decided I needed to change doctors, which I did. My new doctor thought there was something definitely wrong and referred me to a neurologist in November 1994. The neurologist confirmed I had PD. It likely started a year before his diagnosis. I was relieved to learn that the symptoms I was having were not due to “old age”; I had been diagnosed with a progressive brain disease that has no cure. It might seem a bit crazy, but I was relieved to know what I was facing. Finally the pieces of the puzzle were connecting together. I began looking at my life through a different pair of sunglasses.

Over time, I noticed slowness of movement, fatigue, and changes in my writing. It was getting difficult and hard to read. Short term memory and multi-tasking were affected; it became noticeable. I was taking longer to do the simple tasks that I once did with ease.

With the introduction of Parkinson medications I was able to work a few more years; eventually retiring just after turning 55. I started to wonder what I was going to do; with not having work I had to find other things to occupy my time with keeping my mind, body and spirit alive. I had to learn to cope with my PD. How does a person learn to cope and live with PD? For me, I had to make adjustments and learn to have quality of life, not quantity in life. I chose to join a church in my community; this gave me a renewal of hope, plus offered socialization and fellowship, both being quite vital to a healthy lifestyle living with PD. I had something to look forward to by helping others in my church. I learned there was a Parkinson support group in my city. My wife and I joined the support group and by attending the group ‘we’ have come to terms understanding better this progressive brain disease by easing the burden for me and others that are afflicted by this debilitating condition. Together we are traveling the Parkinson journey learning that our lives do not have to crumble and cave in around us.

The support group people have been wonderful to the both of us. We all have day to day struggles; however, those struggles are lessened because we have friends and family that we can turn to for support, as well as, the Parkinson Alberta Society. This society is for people with PD. They provide for the psychosocial needs our population requires through supportive counselling, programs and services.
I’ve been an active participant and volunteer for the Parkinson SuperWalk. Last year I raised over $2000.00 for the walk! I’m fortunate again this year to be an active participant, although, fatigue has slowed me down in collecting pledges for the 2011 SuperWalk. I’ve a goal of $1000.00 for this year's walk and I’m closing in on that number with only a couple weeks away until Medicine Hat laces up their runners for the Parkinson SuperWalk!

I’m fortunate to be married 48 years to an angel who has been my caregiver. My wife, Carol, is always keeping tuned to new information about PD, as well as, accessing the various funding resources available to seniors. She is a remarkable woman! I urge you if you are hooked up with a good caregiver treat them well and count your blessings.

I just turned 69 years of age and am still active in as much as possible. Between volunteering at my church, helping neighbors, playing horseshoes, tinkering around the house with make work projects I still continue the fight to Ease the Burden and Find a Cure for Parkinson disease.
My mantra is “Live for today and let tomorrow take care of itself.”
 

Never Stop
 

Jayne Leong was new to Calgary SuperWalk this year. She came alone. She walked alone. She knew no one there. But there she was, offering me the pictures she had captured on her first SuperWalk. When I had a chance to learn her story, I discovered that she was walking for a friend on the other side of the country, in Ottawa, who has Parkinson Plus. It is a tale of inspirational friendship and never giving up hope, even in the face of an irreversible succession of events she calls "Time". Glenda Blissett, Director of Communication.

By Jayne Leong

TIME – “A non spatial continuum in which events occur in apparently irreversible succession from the past through the present to the future.”

Who can argue that there’s nothing like springing out of bed on a sunny Saturday morning and heading out for a brisk walk in your new Sketchers? Is this a luxury we take for granted or a fundamental right and freedom? We are given legs and feet; we are meant to use them; we are meant to move. So why does my good friend Karen sit in a wheelchair much of the time, unable to accomplish the simplest of tasks that we call “living”? Karen — a once able-bodied wife, mother, sister, friend and neighbour — has been my friend for 33 years. Motivational speakers will tell you that you are in charge of your life, your path, your happiness; you are the master of your successes or failures and health; you have choices. So why is Karen no longer able to care for her children, go the gym, get groceries or have gainful employment? Well Motivational Speaker, this must surely be just contradictory advice you’re doling out. Or is there something else going on here?
The culprit is this thing called Multiple System Atrophy (MSA).

A lot of nerve it has; infiltrating Karen’s 30-something body; attacking her freedom at such an early age. What gives it the right? Does it have some strange sense of entitlement? How did it get inside her? Why Karen? What happened to being master of one’s domain, body, life? The mere notion that something has moved to the helm and has somehow been charged with the further navigation of Karen’s life... isn’t that preposterous? Maybe so but it is reality. This is indeed cause for much reflection on one’s own circumstance. How did I get so lucky? I work, I shop, I speak, I eat, I walk with the ease of a summer’s breeze.

Yet MSA is alive and well and resides within Karen, challenging her every single day for the past eight years. Karen was diagnosed with Parkinson disease in 2003. It soon became evident that something else was happening and MSA was the shocking diagnosis. This past year, Karen left her home and entered a care facility, relinquishing the role of mother of her 9 and 11 year old children. The path of her life has taken a turn in a direction no one ever wanted to go. How can a 10x10 room, with a lifetime of clothes crammed into narrow closets and boxes of photographs and artwork lining the walls, suffice?

Enough doom and gloom already. The reality is that the gentle hand of humankind exists in this miserable illness and has indeed found its way into Karen’s life. It takes the form of helpful neighbours, kind friends, loving family, fundraising events, donations, home cooked meals, visits and laughs. TIME. Although I live a four-hour flight away from Karen, I am kept apprised of her condition, her ups and her downs through this wonderful network of friends and family. And although Karen can no longer speak well, I can. I can let her hear my voice, let her know I am thinking about her. And I am elated to hear her words, though often incomprehensible. I love to hear her. I am struck by and indeed inspired by the outpouring of community. We are all capable of such great things and the healing power of a phone call, a visit or a home baked cupcake is immeasurable. We stress about a flat tire, a broken fingernail, a fallen soufflé. Yet Karen still jokes, laughs, smiles...

Despite MSA and all its formidable misery, it is paramount that each and every one of us extends a hand. Because we know what lies ahead, MSA will eventually take down my beautiful friend Karen but we certainly won’t let it without a good fight.

Give your time. Never stop hoping. Never stop loving.
 


Training with Parkinson's from dan sellers on Vimeo.

“Parkinson’s is Not All Doom and Gloom”



By John McHutchison

Parkinson’s???? What’s Parkinson’s? These may have been your first words when your spouse/partner/wife got your attention long enough to tell you what her doctor/neurologist had told her after testing and inquiry into her symptoms. Symptoms which had been ongoing for probably 2 to 3 years – slight things like finger/hand tremor, stiffness in the joints, inability to walk a straight line, lack of arm swinging while walking. Symptoms and combinations thereof vary markedly between PWP (people with Parkinson’s) so no two are exactly alike and therefore treatment for this disease will vary over the years ahead for your spouse.

Parkinson’s is an insidious degenerative condition, cause unknown, for which there is no cure at this time. Various drugs and other therapies are, however, available to control and alleviate symptoms. Parkinson’s is, thankfully, generally a slow moving disease allowing PWP to live a life to the best of their ability and desire.

So, after the diagnosis, what do you do? Get yourselves educated about the disease. Seek out books/videos on the subject, from public librairies and book stores, which explain about Parkinson’s in lay terms and in language easier to understand. Get in touch with your local Parkinson’s Society who has professional counselors to guide you and direct you to all kinds of brochures giving information and other aspects about the disease. Join a Parkinson’s support group. Groups consist of your peers, PWP and their Caregivers, who are going through/have gone through what you are now experiencing and whose insights will be an invaluable tool to help you cope in the days and months ahead.

After diagnosis, Caregivers will generally find that care giving is not too onerous a task, as life and daily living has to go on while the PWP and Caregivers come to terms with the disease and the acceptance thereof . However, as progression takes its normal course in the disease and the PWP finds coping with daily tasks more difficult, the Caregivers have to step in and assist where necessary. Eventually decisions, difficult decisions (e.g. should the PWP still be driving a motor vehicle?... should the PWP with weak arm muscle control and balance problems be taking hot food dishes out of an oven?.... will have to be made and daily life adjusted accordingly. Caregivers will find themselves taking over control of daily living tasks more and more and these additional burdens often bring with them a sense of frustration and anger. Not anger at the PWP, but anger at the disease that is causing changes in family life.

In summary, Parkinson’s disease will force changes in your lifestyle whether you like it or not. Be prepared to adjust in a mutuality of respect for each other. Don’t delay doing planned things until you retire; when retirement comes you may not be physically able to carry out these plans. So, educate yourselves, stay fit and exercise, join that support group – you’ll be glad you did. Parkinson’s is not all doom and gloom, it’s more like life with its usual ups and downs plus the added dimension of a chronic illness; there will be laughs along the way and moments of absolute hilarity too, so look on the bright side.
 



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