Letters to Our Younger Selves
Every journey with Parkinson’s is unique. The disease can run in families, or come as a complete surprise. Often, many people with Parkinson’s don’t understand much about the disease until they themselves are diagnosed.
In honour of Parkinson’s Awareness Month in April 2021, we invited our members to share their journeys by submitting a letter written to their younger selves. These stories serve to inspire hope, spread awareness, and empower others.
Click each person’s name below to read their letter of hope and inspiration.
Michael Cheung [link]
Leslie Davidson [link]
Larry Gifford [link]
Wendy Olinger [link]
Debbie Hartley [link]
Roberta Lee Campbell [link]
Allan [link]
Sylvia Bull [link]
Jim Stevenson [link]
Richard Mayede [link]
Suzanne [link]
Jack Waller [link]
Dan Wainwright [link]
Tony Dawson [link]
Gary Schroeder [link]
Michael Cheung
Dear 11-year old Michael Cheung,
Looking 19 years into the future since our father was first diagnosed with early onset Parkinson’s disease at the age of 45, it’s hard to put into words what this journey has been like so far.
What started as a selfish thought from a teenager wanting a father who wasn’t different than the others during your high school years, will eventually transform into a realization of the sacrifices your parents made to hide all of the struggles they went through to provide you with as normal of a childhood as possible. They were simply doing the best they could given the circumstances.
I didn’t understand it then, comparing myself to other people with dads they saw as successful role models, and wondering why I didn’t have that myself. Turns out I couldn’t be further away from the truth. The resiliency, toughness, courage, and strength our parents have shown in the past 19 years is simply remarkable. Mom and Dad will be the two best role models you could have ever asked for, just not in the typical way you often see in fairytale movies and stories.
You will spend many nights crying in fear of what the future holds, but it will also motivate you to stop feeling sorry for yourself and raise funds and awareness in hopes that it will help better the lives of others.
Nothing you ever end up doing in life will be more important than this.
In the quest to raise funds and awareness, you will hesitate to tell your story, fearing how your friends will react. It will end up taking until the age of 26, which is laughable considering your friends overwhelm you with more support than ever imaginable. Unfortunately, it turns out almost everyone you know has a similar story of heartbreak, and can relate in ways that will make you feel much less lonely than being an only child growing up hiding this ‘secret’.
Writing this letter today, I have no idea what the future holds. Even though science says that the odds may be against us, we will continue to make the most out of every situation and try to turn this unfortunate break into the biggest blessing of our life.
While I certainly wouldn’t wish for anyone to be diagnosed with Parkinson’s, the perspective of gratitude, empathy, family, and toughness I have developed through this experience are things that have helped me tremendously and have become my unfair advantage.
Cherish every moment you have with your parents, and understand that regardless of what happens going forward, they will always do their best to care and provide for you.
When you eventually come to that realization, you will end up spending the rest of your life trying to pay them back.
With that, you learn the most beautiful lesson in all of this, and the one that has kept your family together throughout all of the challenges/difficulties to date.
Love.
It truly does conquer all, including Parkinson’s disease. #BeatParky
Sincerely,
30-year old Michael Cheung
Leslie Davidson
Dear Younger Self,
I remember you.
I remember a beautiful spring day, a neurologist’s office and those two words.
Parkinson’s disease.
Early days, the doctor says. Keep exercising. The medication will help when the time comes.
You leave his office and join your husband in the waiting room. He wanted to come in with you to see the doctor but you said no.
It’s his birthday. His 68 birthday. His sister lived with Parkinson’s for almost 30 years and then she died. You’ve read that Parkinson’s doesn’t kill you. It seems to you that it can, it does. You fear the sorrow in his face. You think you know how this ends but listen to me – you don’t.
You wait until you are in the car to tell him. You weep and he hugs and you say, “let’s go home”.
Fifteen minutes later, or maybe it’s much longer than that, you realize you are not on the highway home, but on a strange road high above the city looking down on the lake and orchards from an unfamiliar place.
“Where are we?”, you ask.
“I’ve no idea”, he says.
You give your head an ironic shake and cannot help but laugh. It is the first time Parkinson’s makes you laugh – it won’t be the last. Laughter is going to get you through this. It lives just the other side of tears and, oh my goodness, there are going to be tears.
I can’t tell how you should do it differently. You do the best you can. You have days of self-pity and days of Pollyanna optimism. You resist connecting with other ‘parkies’ – who wants to join that club? – but in your own time, just in time, you find them, your wise and funny people, and you feel so much less alone. They hold you up.
You research like crazy and sometimes it makes you crazy, all the new knowledge you never wanted to learn. It makes you crazy and angry and scared and sad.
And then it makes you powerful. It’s power to know that protein and levodopa don’t mix. To know that all the hiking, skiing, biking, and dancing you’d always loved to do will help you cuddle your grandbabies and kick the soccer ball and roll out the cookie dough and hang on to your marbles. It’s power to hold a frail 80 year old’s hand and teach her a breathing technique to calm the anxiety that her bewildered husband complains is all in her head.
Of course it is, you tell him. Where else would it be?
And if, as time goes on, you start to feel less powerful, it’s okay to take a day or a week to mourn the losses – to say out loud, “this is hard”.
You don’t know how it ends. No one does.
Remember that day? That day you heard the words? You weren’t truly lost, just a little turned around. And then you laughed.
So laugh. Gather your people. Learn what you need to know. Exercise. Feel the feelings. Hold someone’s hand. You’ll always find your way home.
With love,
Leslie
Larry Gifford
Hey Larry,
I know we are still coming to terms with the Parkinson’s news.
These first few weeks after diagnosis are full of denial and anxiety. Questions, big and small, never seem to stop swirling around in our head.
What is it? Will it kill me? Am I going to need to quit my job? Are they going to fire me? What next? Why me? How’d this happen? What did I do wrong? Aren’t I too young to have Parkinson’s? Why did I wait so long to seek help? Will I always have trouble walking? Will I need brain surgery? Will I be a burden to my family? Just how degenerative is degenerative?
Thousands of others are yet to find their way in between our ears.
You will answer some of these questions on your own soon enough. Your neurologist and other professionals can answer some of the others. If I know you, and I do because I am the future you – it will take time, perspective, dreams, hope, a community, and your connection to spirit to resolve the rest.
Take deep breaths. Appreciate your newfound slowness. Learn early on to ask for what we want or need, even if that is a nap in the middle of the workday.
Remember, while we are just becoming aware of this Parkinson’s part of our lives, it’s not new. Parky has been sharing space in our head for decades.
It is not a setback or a bump in the road. It’s our life. Acknowledging, embracing, or owning the diagnosis is not surrender. It’s taking the power of Parkinson’s back. Parkinson’s has not defined you up to this point and it is not who you are. It is a reality of your life that you must manage with discipline.
We are not alone. Parkinson’s is the fastest growing neurological condition in the world. This is the first time we’ve ever been ‘trendy’.
Be in awe of levodopa. We take a lot of these pills in order to live a fairly normal life.
Laughter is great medicine. Laugh every day. Maybe look for a way to use humour as a healing tool?
Learn to say no without feeling guilty. We are not the same person that people have cast us as in their life story. We were not supposed to be ‘sick guy’. It will take a while for it to sink in for other people. We don’t need to meet their expectations of you being ‘well’ or ‘better’ or even be the same dude we were twenty years ago when they knew us best.
Parkinson’s can be a gift. Actually, it is a rather crappy gift. By that, I mean I would not wrap it up and give it to anyone. However, despite constantly increasing meds, dyskinesia, cancelled outings, nerve pain, and exhaustion, we are living life more than ever. We are going places we have never gone. We are doing things we have always wanted to do, but never made priority. We also have discovered a new level of love and appreciation for our family and friends. When we ultimately accept Parkinson’s as part of our life experience, it opened the floodgates of unconditional love that surrounds and supports us. I am certain it has always been there for us. It just was never so crystal clear.
Larry, we are about to meet some of the most caring, passionate, encouraging, supportive, loving people we’ve ever known. Many will become instant-lifelong friends. #ThanksParkinsons
Yes, things will change. Time becomes relative. Plans are always tentative depending on how we are feeling. Symptoms come and go, ebb and flow, emotions emerge without warning, and tears lead to laughter and back to tears again.
It’s okay. We’re okay. We’re going to be fine. Believe it. Have hope.
Love,
Me.
Wendy Olinger
Dear Younger Self,
Let go of silly thoughts but hold onto encouraging words, thoughts and deeds – Many, many years ago, I remember my Mom’s cousin’s wife reading my palm and telling me I would experience health issues in my early 50’s. I distinctly remember asking if I would die from them and she said no, they were more like ‘inconveniencies’! That idea has remained tucked away in a corner of my thoughts to this day. Try to look upon Parkinson’s disease as an inconvenience, which it tends to be!
Keep a sense of humor – Above all, try to keep some humor in your life. The card we have been dealt is not the happiest nor the easiest one in the deck but while we still have our wits about us, choose to be happy and laugh as much as possible. See and make sunshine in all that you do!
Keep a journal or diary of what your days and nights are like and what your symptoms are – This is a good habit to get into because when you are having a bad day, you can see how far you’ve come and you will recognize that you have made it through rougher times and have survived. Also, doctors always like to know this information!
Keep a documented and dated list of ALL the medicines you are taking and their frequencies as well as what you have taken in the past and jot down what they are supposed to address – Your meds are forever changing and you need to keep track of them. Dedicate a separate book to record in or design your own record sheets. Different doctors need to have this information. As you progress with this disease, and sometimes it is as a result of the meds, but you tend to forget things!
If you are financially able to, take a trip with your significant other. Don’t put it off because you never know what is behind the next door – Recently a good friend of ours whom we had shared a vacation with years earlier, pre-Parkinson’s days, suggested that the three of us should go to Cuba together. My husband appeared excited but all I felt was panic. Having Duodopa and having to have sterile conditions along with refrigeration so the gel pack cassettes can be kept at a certain temperature and not being able to swim, darkened my thoughts. I just couldn’t do it.
I wish we had taken the time to travel more after our youngest graduated. My husband’s work was very long hours and I didn’t like leaving my kids so that made doing anything else for the most part, out of the question. We went on a few road trips and we had fun doing that but I know my husband would have liked to have done more.
Make memories and take pictures with your family and loved ones. Let beauty shine through from within. Accept what the mirror reflects! –Looking back over the years I wish there were more pictures of each of us as a family before Parkinson’s disease devoured my body. There was a time when I could look proudly in the mirror and the reflection looking back at me didn’t look half bad. I’m not over-joyed by what I see now but my Dad used to always tell me “that looks are only skin deep”. I must learn accept that!
I was recently humbled after reading a message from The BC Cancer Foundation by Amy MacRae. She was on the 2020 CBC Non-Fiction Prize Shortlist for her Take a Photo Before I Leave You. It helps to put everything into perspective. You can read it here.
Write letters to our family before it is too late – Write letters to each person in your life that you care about and make it specific to them – you can add to it as you age and as different things and life lessons arise! This disease can rob you of your thoughts without warning and our loved ones need reassurance that they will remain in our heart no matter what!
Make a point of encouraging others who share the disease – If you want to make yourself feel good then encourage another person who shares this disease. Let them know they are not alone. Give them a ‘reason to be’! Depression is a symptom of Parkinson’s disease and left unchecked it could have disastrous results. Don’t be afraid to reach out yourself, should you need some help with your load!
Advanced Parkinson’s does not mean you are at the end of your life as you know it – If you become troubled by the things that you hear about this disease check them out through reliable sources. For quite some time before I got Duodopa, Dr. Wile would mention that I was in the “Advanced Stage” of Parkinson’s disease. I was crushed every time I heard it because I thought he meant my time on earth was nearly up. Live in the moment and make every moment count.
That’s the end of the messages but there is so much more to my life! Live fully, love deeply, and do the best you can – hang on for the ride!
Sincerely,
Wendy
Debbie Hartley
Dear Debbie,
You knew, didn’t you! August 2011, you were in the shower and noticed your big right toe wiggling, ever so slightly, but indeed it was wiggling! Over the next few months you noticed it wiggling intermittently and you weren’t doing anything to make it move. The wiggling became more consistent but just in the shower. It couldn’t mean anything. Or could it?
August 2012 – your 65th birthday gift was a week in New York City with your two adult daughters! It was your last day there; you striding down 5th Avenue, the girls straggling behind, when one called out, “Hey Mom, you’re not moving your right arm!” You were horrified when you realized they saw what you didn’t even feel! That was the first wake up call to the possibility that this could indeed be “something.”
The window panes to the past were becoming less cloudy. The call to your family doctor, a referral, and confirmation from the neurologist that this was indeed Parkinson’s disease, opened the window wide, and whoosh – reality swept in. Your mother and her twin sister, and now you. And more recently, your younger sister!
Your mother was diagnosed with Parkinson’s disease in 1964 at the age of 55. We call that young onset now – there was no category for her then. Or access to effective medication. Or support groups. Besides owning a business and being very engaged in community events, staying active and fit was always a priority for her. She stretched daily on the living room floor, walked everywhere, and golfed 5 times a week.
She kept her diagnosis from you and your sister for the first few years and by the time she and your dad broke the news, you already suspected that something was wrong. You were 17, your sister 15. Way too young to process the implications of her future. Or yours. And way too young to ask questions and pay closer attention. That lingering regret has settled on your shoulders.
After retirement in 2004 and a move to Kelowna, where the weather was so much more amenable to year-round outdoor activities, you hit the trails embracing every opportunity to explore your new environment. You even joined the Senior Centre for exercise classes. Admit it girl – you choked on the label ‘senior’ but it turned out the classes were fun, varied, and challenging. You eagerly embraced the “active everyday” lifestyle. How could you have realized that those years would carry you forward and prepare you for the challenges yet to come.
Back to that wiggling toe. A couple of months after diagnosis you noticed a little note in the Community Events column of the local newspaper, of a Parkinson Support Group meeting in a local church hall. 7:00 pm. Envisioning about a dozen people gathered in a semi-circle chatting about their problems, you and your husband Garry showed up at 6:55 pm to a hall already filled with at least 60 people. You were warmly welcomed at the door, introduced to the large crowd, and given a brochure from Parkinson Society BC. The rest is… the rest of your life! Keep going girl!
With love, grit, and acceptance,
Debbie
Roberta Lee Campbell
Bear with me, for I have PD, and over seventy standby…
Ready for movement … To get the gist
Here is my
Motor hierarchy checklist
Muscles … check
Motor neurons … check
Central Pattern Generators … check
Brainstem … check
Motor cortex … check
OIL!!!!
Oh no!
THE OIL!
‘Tis my foil!
Alas!
I am defeated
Oil production
90% depleted
No transmitter to be seen I simply lack
That DOPAMINE.
Hierarchy
Not a go
Not substantial OIL to flow
I am the tin woman
of Wizard of Oz fame, oops they left me out (… misogyny
once again?)
Stiiiiff and rigiiiid Increased tremor
For a few years
As I remember Dystonia comes
No matter the weather
Every sinew pulled so tight
Grit my teeth with all my might
Try to sleep throughout the night
Symptoms
Were my only chance Of analyzing
This stiff motor dance
Had MRI And CT
To see just what was meant to be
… No MS
(No de-my-el-in-a-tion)
Hence E-lim-in-a-tion!
You see …
Alas, as yet there is no actual PD Test!
If PD
Is meant to be
Only midbrain section is route to see
If substantia nigra
Is black or not.
But I shall have to wait to see what I have got
Must wait until I ex-pir-ate
Then I promise
My brain to donate
And then, oh then All will see
If I actually
Had PD?
So my cells that make my dopamine died Neouro folks
Still wondering why Neuro-toxins?
Such as pesticides? My genes perhaps? Yet to decide…
Neuro transmitter “D”…
The process has many quirks But I shall attempt to tell
How system works
Action potential
Goes on its way
Axon to Syn Terminal
If things OK
Channels open
Ca+ ions
Flood the way
Snarepin says OK
Here is the way
Then vesicle membrane
(D “oil” inside)
Fuses to next cell membrane Action Potential
Can simply slide
From cell to cell
An easy ride
Thanks to the D Transmission can abide
Process repeats and repeats See what it means
That ease of movement thanks to dopamine
Unfortunate-Lee That is what I lack Is my D producers This is a fact
In substantia nigra
(In midbrain, telencephalon) Are in effect DEAD
Forever gone
No oil production
Forever more.
Wish I could purchase D cells At the Pharma-Store.
Wish I could just Ingest D freely Impossible, impossible Unfortunate-Lee
Oh dear, oh dear,
I am at a loss …
As the blood brain barrier The D cannot cross.
I must rely on substrate Pharma-made
‘Tis the only thing
That can give me aid
Sigh, my own dopamine Is my quest
Not possible,
Give it a rest!
On Pharma-made,
I must rely
For of my D producers 90% did die
Generic L-Dopa
Or Brand Sinemet With either
Partial need is met Forcing D production In cells I have left (For now
Not totally bereft)
Timing is crucial
Four hours is max
Then dose again
Those are the facts Imperfect, but most days Does suffice
For the inhibitors
Can be inhibited still With a simple swallow Of Levodopa pill.
To be honest,
some days are hell
No rhyme no reason. Perhaps too early to tell
Tremors and pain often cast their spell.
What helps is exercise
And loud music with a beat Chanting Math multiples
As I move my feet
Reading and gardening These seem to often defeat The arduous pathways
I am forced to meet.
Although gardening
has a price to pay
But to see it blossom Overcomes my “payback” day.
Years ago, my Father The same path travelled (Little I knew
My fate too would unravel The same diagnosis Would become my focus)
His mind was sharp
Right to the end
A wheelchair topple …
He did not mend
A scene it was Reminiscent of ED Devine A rush to check lottery Caused his decline
An aside here ..
Dad had sinemet
Side effect
We wondered how
His needs could be met
What happened was His jaw would lock Botox was new, Luckily, Dad got
A research doc …
Injections three times a year Keeping muscle
Free and clear.
Botox blocked the
The muscle contracting
Cut the snare pin
And jaw lock, was unlocking
One must find humour, In every state.
A Sally Ann ringer
I could make!
Allan
Dear Allan,
You are young strong and have no health issues at this time. Accept that as a gift from the powers that be and stop bragging about it. Just because you don’t even take aspirin doesn’t mean that poor health won’t eventually catch up with you.
So take care of those that you say you love now. Because if and when the time comes they will be the ones you will depend on to look after you. As I have often heard – ‘be good to those that hold the ladder that you climb toward success so that they can willingly catch you should you fall’.
Sincerely,
Sylvia Bull
Dear younger me,
Don’t be afraid to tell your family and friends that you have been diagnosed with Parkinson’s. It sounds like it is a terrible thing to happen to you but realistically it is not so bad.
There are lots of advantages to having PD and I think the first one is that everyone that you tell will be upset at first and then when they see how you respond to it they will feel okay. Family will ask how you got it but the truth is no one knows how it starts. There is lots of support available to you. The most important thing is doing exercise at least 5 times a week, and make sure that you enjoy what you do. Also try to carry on with whatever you are doing once you are diagnosed even though you probably will have to challenge yourself and possibly streamline the things that you are doing, but there are ways to change everything in life.
Enjoy your journey, you never know what life is going to give you next.
Sincerely,
Sylvia
Jim Stevenson
Dear younger me,
First of all listen to your wife. She is very observant and able to recognize body changes that were occurring: no arm movement, slouching, impact of cold, foot dragging, sleep patterns, slowness, etc. Secondly listen to your wife when she insists that you need to get medical attention to identify what was causing these changes. You insist it was just a growing old problem until the twitching started. Thirdly I would recommend finding a good general practitioner (GP) who will work with you in finding the reasons for the changes you are experiencing as this is often a diagnosis not easy to get. First it was a pinched nerve, then a familial tremor, and after two years, finally a Parkinson’s disease diagnosis. My GP has been constantly supportive through this process.
After diagnosis I would advise getting as much information as possible. Join Parkinson Society BC, local support groups, and share with friends and family. Try to continue doing the many things you enjoy and don’t limit yourself. I tended to withdraw from some activities due to perceived limitations which I now regret. Exercise helps.
Enough advice – you just need to keep up the good fight and get on with life.
Sincerely,
Jim
Richard Mayede
Dear younger me,
Dude, don’t take this the wrong way, but you should’ve taken meds Dr. McKeown told you to take.. Rather, you waited a year, letting yourself get slower and slower. Why go through that punishment to yourself? I know that you’re worried about the amount of medication you’ll take in your lifetime, but remember, your quality of life is important too. You’re starting off with pramipexole (Mirapex) and I know you are worried about the side effects of gambling addiction, but luckily for you, you’re not getting that side effect nor anything else.
What you are doing well is listening to your doc.’s advice on medications and staying as active as possible. Keep doing that and you’ll go along way without having DBS… which is a surgery that you’ll get in 2021 (yay!), and, I don’t mean to discourage you, but you’ll have waited since 2017 (boo!), when you first get on the list to consult with the neurosurgeon. Luckily for you, you have your consultation and surgery all within a six-month time span.
The other thing you should do is get in touch with Parkinson Society BC sooner. Don’t be so hung up about seeing other people with Parkinson’s. Because you didn’t want to see what you think might happen to you, you missed an opportunity to get to know PSBC much sooner. Again, the good thing is you do take action and get on the board, and help out in a number of ways that help many others with PD. That’s the best thing you will find out by getting to know the staff and members of PSBC. They are all unique individuals who care about and care for people with PD and the friendships you develop with PWPs and their care partners are truly treasures of the heart.
Sincerely,
Richard
Suzanne
Dear Suzanne,
I know that you have always had concerns about the tremor in your face and hands and ‘nervous shake’ that you have since you were very young.
Finally, in 2019 a doctor listened when I complained yet again about the tremor that worsened year after year. For the past two years, I have been unable to do many of the things that I normally do.
Let’s look back at some of the years:
By the way, you are a professional chef and work as a manager in a shelter for homeless people. You organize and run the team and feed over 10,000 meals per month (that 2-year culinary arts program that qualified you for City and Guilds of London chef papers paid off!). You also run a chefs training program where you teach the students how to cook and work in the food service industry – those students are clients from the shelter who are restarting their lives. You have been responsible for getting hundreds of people back into the work force in a viable industry and job. This took going back to college at 50 years of age – you passed top of your class with a VCC BC instructor’s diploma for adult learners. You also teach a food safe program for the students and workers at the facility and organization that you work, and for other non-profit organizations.
You have 3 beautiful and successful daughters, Tiffany, Robyn, and Victoria to first husband Dan, and you are happily married to second husband Lloyd. You love to camp, travel, swim and crotchet.
You will have your health concerns over the years and you fight a good fight helping to get them under control. You have a food addiction and love sweets which puts your weight up to 420lbs at one time. You struggle through the issues of this valid health concern until both knees no longer work and you are in excruciating pain daily. You have type two diabetes, high blood pressure and cholesterol. You are unable to exercise to help reduce the weight and it is a vicious cycle trying to drop weight due to your job and get healthy, trying diet after diet and solution after solution! You will have bariatric surgery at 52, the journey has yet begun – after three months you dropped so much weight (90lbs) that you had a heart attack and hernia which caused you to be hospitalized. Not a bad thing, as if you had the heart attack before the surgery, you likely would not have survived. You lost the weight and after 10 years of pain from arthritis you got your knee replacement surgery. Over the next 3 years, you had the other knee fully replaced and were finally pain free, lost 220lbs, could exercise, diabetes was in remission, no high blood pressure, heart had healed and was good, cholesterol, sleep apnea gone, you had skin removal surgery. You walked daily and exercised twice weekly – you climbed that mountain!!
With concerns increasing over tremors that were out of control, severe muscle pain the upper back, shoulders and neck, things started to get worse. I had spoken to doctors regularly about the annoying jaw and facial movement and the strong tremors in my hands – it was always dismissed. Finally, in 2019 I had gone to an event and two small children were there. I was chatting with them and they asked “why does your head and mouth shake so badly?” I had no idea that it was so noticeable to others! Lots of people had commented on it, but if two little boys under 5 could point it out, it seemed like it was worse than I even thought.
I made an appointment with the doctor and basically demanded that I was sent to see someone who could determine what this was. It had always been sluffed off as a nervous shake or most recently an essential tremor. It took 9 months for me to get in and see a neurologist. Finally, I got in and after one look it was determined that I had not only an essential tremor, but also early onset of Parkinson’s disease! Many clinical tests were performed, and some scans etc. The doctor put me on some Parkinson’s medication which helped decrease the tremors. It makes me wonder that if I had been diagnosed before, would it have gotten as bad. After trying for months, I had to take time off my job as I had so much difficulty controlling my hands (which are imperative when you are doing things like measuring and handling knives etc. A huge concern for accidents to occur). I am now home and walk daily; I do exercise classes through BC Brain Wellness Program and Parkinson’s BC; I swim twice a week; do lots of mind games like sudoku and crosswords to help keep my brain working; and I crotchet to keep my hand eye coordination (I have to use a covered sippy cup for my tea and can’t use knives or measure, portion etc. still). I live a healthy lifestyle and look forward to many more years of this. The medications need lots of regular changes and adjustments, but on the up times things are ok.
In getting more information and watching webinars, I came to the realization that Mum maybe had this. She had many signs, dragging leg, slurred and slow speech, unable to write or use her hands, and choking on foods etc. This went undetected and the doctors continued to say she had a stroke which was not noticeable on a scan or through tests! Sadly, Mum passed away because she chocked on something she was eating.
I am telling you all of this to prepare you for what is to come. It has been a roller coaster ride, so buckle up and get ready! You are unable to change anything, but can be in control only of the things that you can control. You are VERY strong though and can get through anything that you need to! Don’t ignore the health issues as they come up, get help, INSIST on getting checked and follow through! Parkinson’s does not have a cure right now, nor is there a test to determine if you have it (except brain autopsy… we will leave that there!). Medications are available, but don’t always work and there is a lot of downtime when they stop working. Stay in contact with your support team and get as much assistance and information on how to help yourself as you can through the wonderful societies that are there and available. Load yourself with information and remember self care and care for those surrounding you and support you (they need self care too!!).
I am still off work, but hold faith that something will come up that will help with the tremors and muscle pain so that one day I can return to doing the things I love.
We celebrate our 60 birthday in July this year. We have survived all of this (and the Covid pandemic of 2020). We are resilient and will continue to support the fight of Parkinson’s for as long as we can!
Thanks to Parkinson’s Society BC, BC Brain Wellness Program, Michael J Fox Foundation, and Davis Phinney Foundation.
Jack Waller
I have graduated from a caregiver to a carepartner of my husband Ken.
Our journey with Parkinson’s began 11 years ago, with the diagnosis, and the caveat you have seven years.
Being neophytes with this, we began to realise that we needed to know what Parkinson’s is.
We researched, and over a period of time, we have gleaned, and shared with others on the journey.
Over the 20 years we have been together, our lives focused on volunteering. COVID put the brakes on that, yet we have found a few spots we can do this.
Ken’s mantra is he has his good days and his bad days, and the bad days take care of themselves.
Parkinson Society Nova Scotia was born out of a demonstrated need for education, advocacy, and support.
We are blessed as our journey continues to breach geographical constraints, and we continue to befriend those whom we journey with, knowing we will never meet in person.
Dan Wainwright
Hey Dan,
It’s me, your 63 year old self. I’ve got some good news and some bad news for you. I know you want the good news first. So, you’re going to meet Deborah, eventually. She is a wonderful person and you two will be as happy as any two people can be. The bad news is that she is going to be diagnosed with Parkinson’s disease a year before you finally meet.
My advice to you is: start looking for her in 1991! That way you guys will have more that just 8 years together. You two are going to make an awesome team. Do not let her shrug off those first PD symptoms when they appear. Encourage her to seek medical advice as soon as possible, and stay active (she is going to love the PD boxing program).
RETIRE together as soon as you she gets that diagonsis. Tell her you love her every day, she is worth it. Stay by her side, and be patient as she slows.
P.S. Document everything, you’ll need it for the book you’re going to write.
Tony Dawson
Dear earlier me,
Our theme for this Parkinson’s Awareness Month is Parkinson’s disease (PD) is “more than a tremor”. Indeed it is, though you didn’t know that at the time you were diagnosed. You didn’t know anything about this complicated disease, so when your psychiatrist suggested you might have it, you scoffed. He knew that the depression you were being knocked around by (remember that?) could have its roots in the depletion of brain chemicals such as dopamine and serotonin, substances that you had barely heard of. You also had a slight tremor. So, off to your first consultation with a neurologist, who confirmed your (my) shrink’s diagnosis. You (I) rebelled against the idea, but little good did that do. You had it and we were on our way.
So, what is Parkinson’s? It’s more than a tremor, yes, but the tremor part is real and debilitating – simple tasks become burdensome: tying your shoe laces, flossing your teeth, putting on a shirt, doing up buttons or zippers, raising a fork to your mouth. Cooking, which you loved to do, gets harder and slower – spilling the sauce, mangling a carrot you are trying to peel. These deficits are your future, though it seems a bit cruel to lay this awareness on you now. You have a couple of years before you’ll notice the slippage.
PD is also a threat to mental wellbeing: anxiety and depression, those two monsters, tend to visit most patients with PD at some point. For you and me, as for many of us, that’s where it all started – before any physical symptoms. Going along with this, expect apathy and a certain flatness of voice, of facial expression, of cognitive function. Also, of course, slowness of gait, of movement in general. These are all there waiting for you, though you might escape some of them. But wait a minute – you are me, so you won’t escape them.
What else, you might ask? Well, Parkinson’s is also physical weakness – tiredness, wobbliness, trouble with balance, proneness to falling, and dyskinesia. Luckily, you’ll not have to struggle with this last one, at least so far. And then there’s the effects of your disability on those around you, especially your life partner, who has a life of her own and God knows you don’t want her to be saddled with taking care of you. Of course she will be helpful in a thousand ways. But it’s a rough ride for her as well. And what about those grandkids, whom you can no longer take on the kinds of excursions you’d like to (canoeing, skiing, hiking)? You will even find, as weakness encroaches, that you are unable to pick up your six month old grandson for fear of dropping him.
Is there an upside to PD? Well, in your case, yes. It can build a sense of community, of connecting with others in the same boat; it can at times be funny if viewed from an ironic perspective; it is mitigated by vigorous exercise, as we were told by our neurologist right at the very beginning (remember?). That admonition was easy to follow since you and I have always been physically active. Skiing and kayaking will have to go but there’s still space and energy for boxing, walking, swimming, yoga, even cycling (carefully!). Ultimately, PD is a part of life and has to be acknowledged. You may not like it, but it’s yours to keep. So live with it as best you can.
Your old friend,
Tony
Gary Schroeder
It has been twenty years since Parkinson’s started shaking up my life. This will come as no shock to you, my younger self: you can’t shake the jokes out of me. Lucky for you, your voice is still loud enough to gather everyone’s attention. Let me lend you some of my perspective, twenty years down a road I would not recommend travelling, but that you are directly headed.
One of my greatest skillsets is that I have always believed the best in others and always been willing to help anyone in need. Parkinson’s made me become a man of need. It’s humbling to have a disease that hits you down, again and again. I am not a quitter, so the good part of getting hit down is you learn even greater perseverance. And the best part of falling to the actual ground is that you might fall down next to something delicious and sweet that you dropped, so you’ll have a snack while you wait for your wife to get home and help you up.
When you spend most of your adult life constantly looking for ways to help others, which I know you are doing, you can find it quite surprising to wind up with a disease that forces you to need others to help you. I hope that you will learn to take help at a younger age, that you will recognize that others are as willing to help you as you have always been to help them. Who would have thought that all of the years spent serving others would lead to a life where others would wrongfully believe that you have little to offer? Never forget that you always have goodness to offer, and always value what others who live with Parkinson’s have to say. This disease will eventually lessen your ability to speak in a way others can understand, so make the most of every one-liner, every golf tournament speech, every extra low bass note. And can I suggest, please do speech therapy sooner and take it more seriously. My daughter and others miss my rich bass voice. If I could go back, I would take my singing voice back. I knew I loved to sing, but I did not know how much.
Parkinson’s is filled with secret losses. I know you and you know me – we are the funny guy, the one who is always ready to step up to the mic and share. What you will do over the next twenty years day after day is count it all joy. Do not stop the joy, but know that it would be okay if you also voice some of the losses to more of the people who love you. Parkinson’s will acquaint you with grief. Don’t go it alone, Gary.
One piece of good news that I can promise you is that all of these valuable friendships you have built on the golf course and over barbeques and practical jokes will sustain you. You wouldn’t believe how valuable the game of crib will become to your daily life. Your friends will amaze you by coming to play, and you will amaze them with your commitment to count this entire life as joy. Continue to love the game of golf, to find pleasure in a long car ride, to hold your wife’s hand and open her door. Make each step fill you with gratitude, for unfortunately, golf and driving will become memories.
The same friends who you’ve walked eighteen holes with over and over, will eventually pick you up after you tee’d off, and will eventually skunk you at crib for the eighth week in a row, years after your last golf game.
Start preparing your wife already for how much of the food budget will go to ice cream. Or perhaps learn to like vegetables. If I knew eating healthy would make my life now better, and I mean significantly better, then I would suggest veggies over jujubes. It’s too late now to change my habits around eating, but it’s not too late for you. Your son-in-law’s food budget is mostly lent to spinach salads. Give salad a chance, Gary!
One last thing. Don’t waste this good life on the lesser things. Love your family, love your God, and serve others with the joy you always will have.