My relationship with Parkinson's


#1

A recent interview that I read on Alex Kerten and his Gyro-Kinetic Method in the treatment of Parkinson’s brought into focus my own relationship with Parkinson's.

I have always liked Michael J. Fox. On my first trip to the United States, after seeing him in “Back to the Future”, I had to find those same red striped, white leather Nike’s as well as a pair of Original 501 Levi’s — with the button fly. I returned to South Africa successful. Then, watching him on “Family Ties”, I tried to adopt the same “preppy” look as a young student of law at the University of the Witwatersrand. Years later, when he announced that he had Parkinson’s disease, I was sad for him. Little did I know at the time, but I would also become a member of the same club.

My life changed when I was diagnosed with PD at the age of 49. At the time, my walking gait was off, but was only on the right hand side. It felt like my right leg was not in synch with the left and had simply stopped working — I didn’t have a natural heel-to-toe movement, it was more like a “slap”. Having enjoyed recreational running for years before then, I thought I could run it off. Well, that didn’t last very long — I sounded like a galloping mule — with a limp! Also, I had a resting twitch and tremor in my right hand. At home or in the office, I would try and disguise it by holding my arms, sitting on my hand or clasping my hands together. I was keeping a secret.

In a way, the diagnosis brought a sense of relief — I finally knew what I had. But it was a difficult time. For most of the first year, I became a recluse. Always the life and soul of a party, I couldn’t leave the house. When I did make it out the front door, I could not wait to get back to my house and the couch — the couch became my comfort zone. I did make it into the office, but I pretended I was really busy and buried myself in my office. I did not engage with my staff, and declined client meetings and team events. Everyone told me that me that Parkinson’s was not terminal, but in my mind, my life was over.

Parkinson’s had taken control and it was consuming me. I was a 50 year old, with an 80 year old disease. The lowest point I reached was when I was alone in the house, on a Saturday night. I did not want to be alone with my Parkinson’s. I recall shouting and swearing – at myself. And, then I became overwhelmed with emotion and starting sobbing. I wailed like a baby. The more I thought about myself, the more I cried.

But even in that darkest point, I knew I had to make a change. I was not 80 years old. I had to start thinking differently. I had to get off the couch. I did.

I went downstairs and got on my dusty treadmill. I walked. I no longer cared what it sounded like. The important thing was that I was moving forward — literally. Slowly but surely over the next few weeks, I noticed that my “slap” was quietening and I was returning to a more natural walking gait. I persevered and then started jogging for one minute after a ten minute walk. My thought process kept changing. The more I walked/jogged, the better I felt. I was starting to think in the present, not the future. I was a 50 year old, back on the treadmill.

Growing up, I loved drumming. But living in an apartment in Johannesburg with my widowed mother, and grandmother, it was never the place to own a drum set. Instead, I banged my mother’s furniture to pieces. The lounge suite was my drum set. In my mind I was surrounded by a sixteen drum, ten cymbal set. Then life took over – matriculation, university, marriage, and emigration – first to New Zealand and then to Canada. Before I knew it, I was only drumming on the dashboard of my car — when stopped at a traffic light!

Seeing the positive results with my walk/run routine, I decided to return to drumming. I purchased a cheap, entry level electronic set that I could play with headphones — boy I wish that they had those when I was in my mother’s apartment. I went further and also purchased a set of bongos and congas. I started playing an hour every day and just lost myself in the beat of a song. My arms – particularly my right side – felt fatigued but my twitching and tremor in my right hand stopped.

Looking back, my life changed dramatically when I was diagnosed. But, it changed for the good. Today, I am living more mindfully in the present, surrounding myself with loving and understanding friends, family and work colleagues. I have accepted Parkinson’s into my life. I have become, as Alex Kerten describes in his book, a Parkinson’s Warrior. I am adopting his Gyro-Kinetic Method into my daily exercise regime. I already know that it works.

Michael J. Fox has retained his sense of humour, and like him, I can now recall some comedic moments, even on the day I was diagnosed. One of the clinical tests in reaching a diagnosis is a writing test. Now, you all know what a doctor’s handwriting looks like – well, when the doctor wrote out the prescription I was sure he was also a member of the PD gang! It was definitely worse than mine. When discussing the prescribed medication, he took the time to list all of the potential side effects – hyper sexuality and adopting an addictive lifestyle like gambling. Those are side effects, really? I told my spouse that if she sees me in a trench coat, looking for the credit card, she is to hide the car keys and lock the doors!

I hope Alex doesn’t mind, but my advice to fellow members of the club is, simply, to move. Walk, consciously swing your arms, dance — like no one is watching — get lost in the song and become Tony or Danny in “Saturday Night Fever” or “Grease”. Or even better, join a band!

Yes, I have formed a band and nothing beats playing in front of a live audience. I am also more engaged at the office. And, I am training for a half-marathon.

Parkinson’s has taken my place on the couch – like that old friend who says he is only staying for a few days, but hangs around for a while. It is part of my life but it no longer controls me.

Like Marty McFly, I have gone back to the future!


#2

Very inspiring, LoungeLizard, good to hear it's not beating you.

How long is it since you were diagnosed? 


#3

Hi, Tabbycat:

Thanks for your message. I was diagnosed in May, 2012 but my gait was off for about 5 years before that. 

Be well,


#4

And how long did you spend on the sofa before you reached that "dark point"? I suppose what I'm really asking is, how long post diagnosis did it take you to adjust and start taking back control? 

I'm only recently diagnosed (January this year) and, while I haven't given into the sofa yet, I also haven't come to terms with having PD. Some days I haven't a clue what I feel! 

 


#5

Welcome to the forum LoungeLizard and thank you for sharing such an inspiring, honest and personal account of your relationship with Parkinson's, I really admire the idea that you're a Parkinson's Warrior. big grin

I work at Parkinson's UK, I'm here to monitor the online community and answer any questions you may have. Have a great day and thanks again for your post. 

 


#6

Hi, Tabbycat:

The first year following the diagnosis was the toughest. I experienced all of the stages of mourning - denial, anger, bargaining and acceptance. It also took a while before I found the right dosage of the medication. But the biggest change came when I started moving - walking, then jogging and cycling. I read a lot of books as well - but avoided the Internet. The first books I read were about PD, but I concentrated on the chapters that were relevant to me at the time - I didn't want to read about my future! Other books on mindful living helped me even more - As a Man Thinketh and Outwitting the Devil - were two of my favourites.

Its time to exercise!

Keep in touch, and wish you well.

 

 


#7

Thanks for sharing, LoungeLizard. 

I do move as much as I can, energy levels permitting. However, I find walking both tedious and difficult so not inclined to do much. But I do tai chi and yoga, and try and get to the gym at least twice a week.

Thanks for the book recommendations.big grin

 

 


#8
Hi Tabbycat, I too have had a roller coaster relationship since dx in June 2013. My first noticeable symptom being in the previous year. I had shoulder surgery in May 2012 and i belive that was what triggered my PD. This condition generally is slow to progress in my case it is proving to be aggressive, I strongly belive that we have to fight this weather it is physically or mentally if I did not do so it would have consumed me by now it to me is a bereavement life before and life after. I will kick this B**** into touch because i have to. I am due more shoulder surgery this year now on the right my PD is left sided. One bit of advice I can offer you is make sure you are seen by your PD Dr every 6 months you are entitled to and if your GP is any good only seen them + 1 back up if you have any problems inbetween reviews. My GP insists on seeing me monthly. And she admits I know more about PD than she does so in a strange way it means through her I am helping others she is a great GP not many do what she does.When I told her about going off and being filmed she was not surprised and knowing I have her respect really helps and means a lot to me. I sometimes worry I maybe know to much but she tells me otherwise. Knowledge is power after all. Learning about your condition can only help you fight it. Hope this helps. Thanks for your support. BB xx