On post-COVID diagnosis
I was one of the first COVID patients in my country. Early in 2020 I traveled to the US on a business trip, against my wife’s better judgment, and came back sick. I immediately self-isolated myself, spent 10 days at a government quarantine facility, and made a full recovery. But six weeks after I was deemed COVID-free, I started getting odd symptoms: my handwriting went haywire, and I had trouble keeping my balance. My doctor told me she was worried about me and that I should go see a neurologist, but I never made the appointment. A few days later I came back to my doctor, in visibly worse shape, and she said: you need to get to a hospital right now.
I spent 9 days in hospital. They ran every possible test on me, telling me they suspected autoimmune encephalitis, which sent me straight to Dr. Google for advice. The other options were stroke and a tumor. All three seemed equally menacing. The doctors came back and said: we think it’s a form of Parkinsonism. I went for a second opinion where the doctor repeated all the tests and said: if I had to write a textbook on Parkinson’s, I’d put your scans in it. The one thing I can’t explain is why most people take years for their symptoms to become noticeable, yet with you it took weeks.
On medical treatment
I was diagnosed about 18 months ago. Right after my diagnosis I started taking medication to help with the symptoms. The drugs help, but I’m still getting worse.
My hope is that someday there will be some sort of breakthrough in Parkinson’s therapies. I’m a realist, I know the brain is the most complicated organ in the body and that nobody even really knows what causes Parkinson’s, let alone how to reverse it. I also know that there has been very little progress in Parkinson’s treatments over a very long time. But I’m hopeful. Breakthroughs are happening all the time for other conditions, and hopefully there will be one in Parkinson’s research, too.
I have faith in medicine. Other options, like lifestyle changes, yoga, and similar – they help to reduce the risk of complications, maybe reduce pain, but they don’t change the course of the disease. Those options are very important, but I think that only medicine will eventually offer a cure.
On coping individually
Someone once told me, “with Parkinson’s, it’s a black-and-white choice. You either fight it with everything you’ve got, or you give up. There’s no gray area.” I made my decision early on: I’m going to fight this. I just got myself into a mindset where I know I have to – for the sake of my family.
I’m a glass-half-full kind of guy by nature. I haven’t gone to counseling or to Parkinson’s events or anything like that – I don’t need to be told how I feel. I just get on with it. So I have my daily plan, my daily routines, and I stick to them with religious zeal. This is one wagon off of which I can’t fall.
I don’t dwell in self-pity, wondering why it had to happen to me of all people. My wife has done that for the both of us. I just focus on doing everything I can to stay healthy, physically active, and close to my family and friends. That’s my support system – my wife, my kids, and my close friends.
On family members
My family has been greatly affected by my diagnosis. My older son was in the room with me when I was told I had Parkinson’s. I didn’t know much about it at the time – only that Michael J. Fox had it and that it was bad – and my son knew even less; but he saw my expression change and that was enough for him to know that it was serious.
My wife has been affected more than anyone – maybe even more than me, mentally that is. It has completely changed her outlook on our future together. She now realizes she will be more of a caregiver than the happy retiree she thought she would be in our golden years. She’s having a hard time, but she’s hanging on. She copes by keeping herself busy, by talking to friends. And also by taking care of me – imagine having to arrange my 19 pills for me every day! That alone will keep you busy!
On lifestyle changes
I’m a 100% kind of guy. The doctors said I should be more active, so I started walking. I do 5k every morning. Before I was diagnosed I was on high blood pressure medication and was having a hard time controlling my blood pressure with my stressful lifestyle. And lo and behold – after I started walking my blood pressure came down and I’ve even started to reduce my blood pressure medication. And it also helps with Parkinson’s symptoms.
The doctors said I should take yoga. I said no way. They suggested Tai Chi, I said no way. When they offered dancing lessons, I said, alright – after I’m done with yoga. I found a yoga teacher who gave me a program specially designed for people with Parkinson’s, which I practice every morning, and we also do one-on-one lessons once a week.
Yoga seems to have a way of working with my insomnia, another Parkinson’s symptom: no matter what time I go to bed, I wake up at 4am. So instead of just staying in bed until the sun comes up, I just tell myself it’s time to get up and do my daily yoga practice. I feel so much better afterwards.
On telling others
Right from the start I made a conscious decision to be open about my diagnosis. I talked this through with my wife and she was on board. I decided I wasn’t going to be coy about my Parkinson’s, it’s no use. Eventually people will know, they will see me deteriorate, shaking, falling over, dropping things – isn’t it better that they know right away so they’re not taken by surprise a few years down the road?
Besides, there’s only so much you can do to mask the fact that a major change has happened. Due to my insomnia I wake up every morning at 4 a.m. and use the time before everybody else wakes up to do my yoga routine. My youngest daughter was surely going to notice that something’s amiss, what with Dad getting up at 4 a.m. to do yoga. So it’s easier to just come out with it.
One thing that’s still hard for me is seeing the look on people’s faces. It’s understandable, really, it’s a big shock to everyone that a close friend or a family member has a serious medical condition, but that’s where I set my limit. I told my Mom over the phone when I was still in hospital, and now I tell people over instant messaging. It may be a little impersonal, but it works for me – it’s better to say it awkwardly than not to say anything at all.
The individual(s) pictured are not the contributor of the story. Names have been changed to protect anonymity.