Parkinson's Disease - 1 year in
Lessons I learned during my first year with Parkinson's Disease
By Mark Milow
It is amazing how fast a year can go by. Especially if that year was 2021, complete with all of the
distractions and events that took place last year. But having been diagnosed with Parkinson’s Disease in early
2021, I am looking back on the past 365 days with a lot of emotion. When I first heard the words, “You have
Parkinson’s Disease”, a lot of things happened. At hearing those words, my heart felt bruised, my stomach churned, and my mind exploded with thoughts and questions. But hearing those words also added a “dot” on the timeline of my life, and started a clock ticking. This clock marks my “time in” Parkinson’s disease, and it started ticking the day my Doctor gave me the diagnosis. And now, 1 year later I would like to share with you
some things that I learned as a first year “Parky”.
The first thing that I learned about having Parkinson’s Disease is that I am not alone. And that is an
incredibly important lesson to learn! I felt very alone when my symptoms started and I was trying to figure out what was going on in my body (and brain!). I have a wonderfully supportive wife of over 30 years, and family and friends that love me. So I was never actually alone during this initial time…but I sure felt like it at times! One of the first things I did was get connected with other “Parky’s” through social media. We do so much online now, including meeting other people. And what I found is that there is an online community of people with Parkinson’s Disease that is very supportive and caring! Through Instagram, TikTok and Facebook, I was able to connect to other people who are going through or have gone through what I just experienced- a Parkinson’s diagnosis. I cannot tell you how many questions got answered or how many times my spirits have been lifted by forming friendships and getting to know others affected by PD. And this community is not just those who have PD, but also those who care for people diagnosed with Parkinson’s as well. And what a great community it is! In response to a recent post I put online, one user commented that she was “envious” of the
Parkinson’s community because we seem so close to each other. That user comment speaks volumes towards the support that I have experienced in my first year as a Parky. I am so grateful for all the support I have received!
The second thing I have learned is the incredible variability that Parkinson’s Disease impacts people.
There are some common symptoms for sure. But in learning other people’s stories of diagnosis in the last year, it is obvious that Parkinson’s Disease is not a “one size fits all” condition! For some people the PD manifests in a tremor, loss of balance, Bradykinesia (lack of movement) and rigidity, which were my main symptoms. Others have their handwriting change and their speech is impacted first. Still others may experience rigidity along with non-motor related symptoms like mood and thinking changes as first indicators. And as far as treatment for Parkinson’s, the responses are as varied as they come. Many people are given Levodopa/Carbidopa as a primary medication to offset the loss of Dopamine. But the dosage and frequency differs so widely by person that nothing is really “standard”. Others (like myself) take a combination of Levodopa/Carbidopa with other drugs like a Dopamine Agonist. Dopamine Agonists are drugs that basically trick your brain into thinking it is getting more Dopamine. Still other Parkinson’s patients have more aggressive treatments like Deep Brain Stimulation (also known as DBS) as part their fight against PD. DBS is a surgical
process where the patient has implants into the brain allowing for electrical stimulus as a way to improve motor function. One thing is for sure, Parkinson’s Disease is a condition that is clearly very diverse in the way it impacts people!
Another thing that I have learned is that there is a lot of good information out there about Parkinson’s
Disease. There are a lot of misperceptions of Parkinson’s Disease out there. Even for myself, I didn’t realize how much I did not know about PD, even though I had a couple of family members impacted by the disease previously. That is why information is so important! You can find more info on blogs (like this one!) and books along with website’s and podcasts with loads of information for those who want to learn more and educate themselves about PD. At the end of this blog I have included some websites I have found useful. Social media accounts are out there to help people understand PD and it’s impact. It is for that very reason my accounts on Instagram and TikTok exist! There are also national organizations that are very helpful (like the Parkinson’s Foundation and thee Michael J Fox Foundation) and support groups online or in your community that will help you connect with others impacted by PD and to get informed. But keep one thing in mind while you are learning about PD. Since it impacts so many people in so many different ways (the bullet point above), you can almost go out of your mind by the “what if’s” of Parkinson’s Disease as you learn more. I had to learn quickly to not focus on the “what could happen” subjects and to stick to the things about Parkinson’s that
impact me specifically.
One thing that has become incredibly clear to me is how important a good relationship with an engaged doctor is! If you have Parkinson’s Disease, you should have a Neurologist or MDS (Movement Disorder Specialist- a Neurologist with additional training in Movement Disorders like PD) that you are working with. And after hearing the stories of so many people in the PD community that have had a hard time finding doctors that they feel comfortable with, I realize I am incredibly blessed and fortunate to have found both a Neurologist and an MDS that I enjoy working with and trust.
Also the importance of personal physical care cannot be over emphasized as I adapted to my first year of diagnosis. The importance of eating right, exercising and (so often overlooked) getting enough rest cannot be stressed enough. I have started eating better as I embrace the Mediterranean Diet. I have joined a gym and have started working out. But, like so many out there, I need to be more disciplined in my exercise. But the sleep aspect is something that I really, really need to focus on! There are a number of studies out there that show a lack of sleep is bad for Parkinson’s patients and can impact things like your memory and mood. And ironically, many people with Parkinson’s struggle with insomnia! So the struggle for meaningful sleep is real for many “Parkies”. But getting enough rest is an essential part of battling the onset and progression of this disease.
Something else that I have learned is that we can get involved very easily in the fight against
Parkinson’s Disease and for finding a cure. As a “Parky”, I have a personal battle that I will wage against Parkinson’s Disease in the years to come. This battle will be with physical exercise (the gym, yoga, Thai Chi, etc), diet, and medication. But we can all fight Parkinson’s Disease by doing things like taking part in fundraisers to raise money for PD research, enrolling in research programs, or helping those impacted by this terrible disease. One of the very first things I did after I was diagnosed was to sign up for a local run as a fundraiser, because I felt I needed to do something! And actively helping in a fundraiser is a great way to get involved for anyone who wants to join the battle.
Finally, perhaps the most significant lesson I learned in the last year with Parkinson’s Disease is to
approach this condition with an eye on faith, and with a sense of humor. I have to be able to laugh at myself and see the humor in situations that arise as I battle this condition. My first reaction isn’t always to laugh, but having humor as an outlet will certainly help in keeping perspective. A great example of this came right after telling my wife that I was officially diagnosed with Parkinson’s Disease. As you might imagine, it was a somewhat emotional conversation with my wife as I shared the news with her, and the reality that we were both going to be impacted by this news for years to come was setting in. But shortly after this conversation my wife and I were in the kitchen, and my wife took a bottle out of the refrigerator and said, “Hold this”, and put the bottle in my left hand (the hand that tremors). I looked at her a bit puzzled, wondering why I was holding that bottle. She saw that look on my face and said, “Oh that bottle says to ‘Shake before opening’, so you are just
helping me out”. With that, we both laughed, and the mood was much different the rest of the afternoon than what it had been just a short time earlier after discussing my diagnosis upstairs. Humor can have a very positive impact on the situation.
And when I say that I have learned to approach my Parkinson’s diagnosis with an eye on faith, for me
personally it helps to have faith that though I don’t have all the answers, I know there is One who does. And even though I may not understand all that is going on, and the question of “why me?” is not something I will likely ever have an answer to, I have faith that God is able to work out every situation for good…somehow. I leave the “how” questions up to Him to figure out!
So for now, I’ll keep believing. And I’ll keep learning and working hard. I’ll continue to help in the fight
against this awful disease both personally and collectively with others. I will support my fellow “Parkies” and those that stand alongside them, supporting and loving them every step of the way. And next year, I will have a whole new list to share with you of things I learned in year 2!