Today marks 8 years since D-Day (Diagnosis Day – read more here: Okay). While it is not an occasion to celebrate, it still stands out as a memorable day, somewhat similar to how the death of someone dear would mark a calendar. Here are my current thoughts about Parkinson’s with 8 years in my pocket;
I’m noticing that things are progressing (and in chronic disease terms…this is not good) so I’m trying to wrap my head around that. This requires a balance of figuring out ways to improve the way I feel but also to accept and adapt to the way things are going. This is tricky. As I type this post, the Serenity Prayer comes to mind; “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
Time is fleeting. So, I’m working to embrace the present. If there is something that I want to do, I’m going to try hard to make it happen now, as opposed to someday. Someday is going to look and feel very different to now so options must be weighed and prioritized with special consideration.
“I’d never guess you had it if I didn’t already know.” spoken by my neurologist today at my semi-annual appointment.
At first, I took her statement as a positive. My masked face may have even smiled. But as I left, I thought differently. Throughout the 8 minute appointment, I told her about pain, nightmares, sleep problems, choking, neck/head stiffness/immobility. She offered no solutions – just listened. I passed her usual 30 second finger/toe-tapping exercises and it was over.
I left no better off than when I entered. Except I had the recurring and uneasy feeling that she really doesn’t get it. Maybe I’m being overly sensitive. Maybe she thought that would make me feel good. Maybe she was just noticing the quieting effects that proper timing of meds has upon my tremor. However, the invisible side to PD is often more problematic than the shaky side. (see diagram below)
My tremor is not predominant, my stiffness and rigidity is. I needed/wanted help for the pain and I didn’t get it.
I often think I’m her one and only PD patient and I don’t quite fit the ‘hunched over, shaky, elderly man’ version of PD that she likely studied in the ‘diseases’ chapter of her studies.
“Just keep doing what you’re doing and I’ll see you in 6 months,” her last words.
“Be attentive to the roles by which you live – and choose them well. For ultimately, you will become whatever you identify yourself to be.” -David Charles Manners
From the day I was born I was gifted with names/labels/roles that I have worn proudly throughout my life. These names/labels/roles provide a definition of who I am. I am a female, daughter, sister, graduate, woman, sister, adult, aunt, wife, educator, friend, and mom (my favourite!). I have been truly lucky in my life to carry those labels because attached to them are so many relationships with family, friends, and colleagues, that have made my life rich and entertaining.
Today is my 5 year ‘diagnosis anniversary.’ It marks the day when I received the Parkinson’s Disease label. The day that I was labeled as a patient with an illness, disability, and chronic disease. But unlike my other labels, this one does not define who I am – and I will not let it. But I will acknowledge, that like all other labels, there is a relationship that exists between me and PD. It is certainly not my friend, but I need to get along with it so that it doesn’t take control over my other important and valued roles.
Being labeled with a ‘disease’ is complicated and worthy of a future post. But today, this is all the time I will give to PD. I’ve got better things to do! Off to walk with my dog in the morning sun.
Today, May 5th, 2021 marks 4 years since I sat in the Neurologist’s office and heard those words, “Well, I think I can say that you have Parkinson’s Disease.”
Looking back, I have never felt as terrible as I did prior to that day!
Before my diagnosis, I was having unbearable shoulder pain, crazy rigidity/stiffness, urinary incontinence (which meant carefully timed planning for proximity to washrooms), a tremor that I was unsuccessfully trying to control and conceal, my handwriting was illegible, my words were soft, slurred, and often unretrievable, I choked regularly on food/liquid, and I was working under extremely stressful conditions as a VP at a high-needs school.
But although this disease continues to progress while presenting new and unwelcome challenges, I actually feel better now than I did then.
Medication has eased the tremor, improved handwriting, and reduced urinary urgency.
Physiotherapy and Osteopathy treatments help with my shoulder and other PD-related pain.
A Naturopath has prescribed supplements to reduce inflammation.
Speech Therapy and a Swallowing Assessment have offered strategies that help reduce choking and improve vocal volume.
Daily exercise and dietary changes improve everything!
And leaving my job, although a difficult event to accept, removed the stress that was making all of my symptoms worse and provided me with much-needed time to practice self-care.
So finally receiving a PD diagnosis, that explained the reason for all of these symptoms, provided a weird kind of relief and an opportunity to focus on a path forward.
Don’t get me wrong, Parkinson’s sucks (for lack of a better term). There are some really tough days (and nights) and I know that things will continue to become more difficult over time – PD is famous for this – but for today I will mark the anniversary by acknowledging all that I have learned about my brain and the efforts that I have undertaken to slow this train down.
“Diagnosis is not the end, but the beginning of practice” Martin H. Fischer
The Tulips at Dow’s Lake, Ottawa, Canada
(The red and white tulip is the symbol of Parkinson’t Disease)
One of the earliest signs that something might be amiss with your dopamine levels, is the complete or partial loss of the sense of smell. This is called Hyposmia. (This is also one of the early signs of COVID-19 and quite honestly, the relationship scares me! Why covid-19 makes people lose their sense of smell)
I have written about this before in Stop and See the Roses and acknowledged that looking back, this one of my earliest symptoms.
Well, I found out just how EARLY this sign appeared!
As I was looking at old movies from over a decade ago (which was so much fun!), I came upon a moment where my son brought me a flower from the garden to smell. I attempted to smell and my reply was;
“I have a very weak sense of smell because I can’t smell that.”
The date on the film was July…2009.
I was diagnosed in May…2017.
Wow. I’m not sure if anything would be different now if I had pursued a doctor’s visit because I couldn’t smell the flowers, but researchers are now doing a lot of work around early diagnosis based upon loss of/impaired smell.
“Surround yourself with a care team that is dedicated to making your life better.” – Me
Before I told my children or my other family members, I told my physiotherapist and my osteopath that I had been officially diagnosed with Parkinson’s Disease. Some might find this strange, but these two professionals had been with me since the first signs of tremor, rigidity, and stiffness appeared.
It was also great to practice telling people who weren’t emotionally invested in my well-being!
Neither of them was shocked and both moved quickly to develop a treatment plan based on this new information. They provided me with optimism at a time when this was truly lacking. They are both the ‘rockstars’ in their field and I am incredibly grateful for their role in my life.
I laughingly told them that my expectations of them were extremely high and that I was confident they would fix this! They both continue to work hard to ease my pain, improve my movement, and bring calm to my tremors. And we laugh…a lot!
Team Carla has many members now. They are all critical pieces to the puzzle of my PD.
Physiotherapist
Osteopath
Chiropractor
Physiatrist
Counselor/Therapist
Massage Therapist
Naturopath
Neurologist
Family Doctor
Speech Therapist
Cardiologist
Movement Disorder Specialist
and of course my husband, Garth!
ADVICE: Assemble your own team as early as you can – you will manage so much better with support. And if you aren’t fully satisfied with a member, keep looking until you find that perfect fit.
For more info on building your own care team, visit the Michael J. Fox Foundation: Building a Care Team
“The disease is yours. Sit with it for a bit. Take your time to share it with others as you see fit.” – Me
After talking to my kids, I eventually had to deal with the rest of the world. Ugh… I struggled with how to do this? I knew one thing for sure;
I did not want anyone to feel sorry for me.
So I made a plan and this is what I came up with;
I could/would not cry when I told people.
I would put the most positive spin on it.
I would downplay the effects that the disease was having upon me.
I would tell them that this was ‘all good.’
Basically, I would make light of PD, as well as my feelings about it, in order to get me through ‘the telling.’
After a couple of weeks passed, I began.
My sisters, my parents, and some close friends were told face to face or by phonecall depending upon geography and distance. Receiving their caring reactions was incredibly difficult, but I stuck to my plan. Other friends got text messages – this was quick and painless as they had time to react privately and I had time to react privately to their kind words. Slowly I released the news to my employer and my colleagues – this was easier as they saw me daily and were aware of my symptoms.
And the rest of my world, who hadn’t yet heard by word of mouth, found out in my ‘coming out’ post on Facebook 4 months after diagnosis. This occurred on the same day as the Parkinson’s Superwalk (Canadian annual fundraiser for PD). I had intended to participate but had to head out of town for our cousin’s funeral. Our cousin Brigid was taken far too soon after a valiant struggle with cancer. Her positive attitude toward life was clearly evident in the words spoken about her by her family and close friends. She lived her best life and helped so many others do the same.
The message conveyed at the funeral was that of gratitude.
While away, my dear friends at home participated in the Parkinson’s SuperWalk for me! I felt so much gratitude and I wanted to recognize them for the kind-hearted gesture that they had done on my behalf.
“If you put your mind to it you can accomplish anything” Marty McFly
Sharing the diagnosis with my husband was easy as we had talked about the possibility on a daily basis for some time. But telling my kids? This was going to be challenging. They were teenagers. They knew something was up as they could see my symptoms developing but saying the words out loud was something I had to wrap my head around before I could carry it off without falling apart.
I very quickly dismissed the idea of telling them in the ‘family meeting’ format. I couldn’t face all of them at once without becoming emotional and I wanted each of them to have their own private reaction time.
They have very different personalities and would need to be told in three very different ways. The boys were understandably quiet and they had very few questions. I reassured them that I was totally fine and, that in my case, this was not hereditary as nobody else in the family history had PD.
I got through all three deliveries without crying and I was very proud of myself for appearing strong.
Oddly enough, at one point, I actually found myself laughing! You see the Back to the Future movie series had been a favourite at our house and the boys absolutely love Michael J. Fox (aka Marty McFly). So when I referenced how the MJFF (Michael J. Fox Foundation) is searching for a cure and that I felt they were getting close, one of the boys held both of my hands, looked into my eyes, and said,
“Can I call you McFly?”
Absolutely!
Telling your loved ones that you have a progressive neurological disease is indeed scary for you and for them. I would suggest you take some time to create some sort of plan so that you can be prepared for the message you want to give and the reactions you may receive.
Pondering PD 