I started to get a tremor in my right hand in April 2020, I had Covid in March 2020, initially I thought the tremor was due to me having Covid and didn’t think much about it, as it didn’t go away I requested my GP to refer me to a neurologist who I visited in October 2020, the neurologist was not an expert in movement disorders, I requested a DAT scan to which I received the results in January 2021, the test was not inconclusive. The neurologist said it would be better if I was referred to a movement disorder specialist.
I was referred to the National Neurologist hospital at Russel Square, my appointment was for June 21st 2021 when I met my consultant, after a 20 minute diagnosis I was told I had Parkinson’s and no cure is available, I was given a selection of medications that I could research and on my next visit October 2021 we can discuss which meds to take.
When leaving the hospital, I sat on the bench near the square and had a little cry, loads of thoughts going through my head (the not knowing), at which point I wished I had brought someone with me. It took me a few weeks to make myself understand this isn’t going away and I need to carry on with my life as normally as possible. My family, parents, siblings were also shocked, but since have been a solid rock and have been a great pillar of support, my sister always accompanies me on any hospital visits.
I started to take my first meds in October 2021 Sageline 2 x 5mg tablets.
Me:
I have led a very active life both in work and sport, I have been teaching martial arts for over 35 years, I also play and teach hockey.
In the past I have completed marathons, bike rides and treks to raise crucial funding for charities that friends and family have been affected by. Some of these included: Meningitis Trust, BHF and helping children with Leukaemia.
Future:
I will try my best to help others that have Parkinson’s, I have joined my local Parkinson’s UK group, I am looking to offer free boxing lessons to the group, from my research and consultants advise this is one of the best sports (non combative) for us who suffer from Parkinson’s. We are currently looking for a location where I can deliver this.
Me and my daughter will also be doing a trek up Mount Kilimanjaro in aid of Parkinson’s UK in October 2022:
Relief of sluggish colon peristalsis within the first two weeks. Mild improvement in motor symptoms - tremor and motor impairment, by around four months. Stable symptoms in the several years since.
Funny how our stories sound very similar to one another's, Rajesh. I was diagnosed and got the same news as you in the same way from my Neurologist. I think maybe the Universities that train neuros should offer a course in Empathic connections, aye? I guess I can appreciate that an incurable disease is a hard message to break to peeps.
Since my diagnosis, the Medicos have done their best dodging any connections -- I've had two visits from two separate local Nurses 8 mos. apart. They were both supportive. I need to see a physio about my difficulties swallowing. And I wish I could talk to my Neuro about the sleep behavior disorder issues.
All the best on your journey. I hope you can find plenty of professionals and cohorts that help you when you need it most. Cheers, Alan
Hello Jagdeep! I have a background which is similar to yours in sports, I was diagnosed in 2020 at the age of 60 when I have had symptoms since 2018. I have been an ironman triathlete, a marathoner, ultramarathoner, 10k and 5K Runner, a yoga practitioner and a Yoga instructor in the last six years. You are correct about boxing, it’s meant to be amazing and the way to diminish your symptoms. I do cycling at high cadence and run/walk plus long distance swimming now. A bunch of us raised 40.000 GBP by crossing the Solent last year. We were brought together through the PDWarrior program that was created in Australia and is designed to aid in neuroplasticity, check it out. Certain forms of exercise are very good for Parkinson’s, and indeed all the exercise and activity that will stimulate our motor cortex. This is not the end of the world, if you haven’t, check out the story of John Pepper either in the book by Norman Doidge (the brain’s way of healing), or in Pepper’s own book… you’ll be inspired. Let me know if I can be of help! We’re gonna be alright ! 😃
Amazing! Thank you for your response I most definitely look into the book you mentioned. Like you said always remain positive a great attitude to have.
Martial Arts skills, and hockey 🏒 playing is quite impressive! Having a PD diagnosis, when one is used to being very athletic can be very challenging. Adapting to PD symptoms infringing on athletic prowess, would be a good way to start; however, safety is of primary importance. As a trained trainer in exercise, I’ve had to adapt many exercises, to adapt to my loss of balance, spatial disparities, cogwheel rigidity, muscle spasms, and resting tremors. In spite of being on Sinemet, I still have symptoms that I contend with when exercising. Stretching, warm-up, and cool-down are very important in my exercise routine! Unless if symptoms are extremely mild, I don’t see hockey playing, on a regular team, as a viable option. My grandson has been a hockey player for years, and I’ve been to all his games and practices, since he started, at 6 years old! With it being such a physical, quick action sport, requiring excellent balance, and coordination, I would not recommend it to people, who have diagnosed PD - especially playing and participating in ice hockey!! Your teaching hockey 🥅 can be viable, and adaptable though! Good luck, and, as my Doc always says, KEEP MOVING!!
Wow.. I am 53 diagnosed 3 years ago. This has been a journey. I am trying to get back into cycling but I am still grieving the loss of my best friend due to a cycling accident back in April. You just have to stay positive and keep moving. I also have a tremor in my right hand and a bit of weakness in my right foot. No ambulatory issues yet. I also have restless leg syndrome which makes things fun. I take meds 3x a day and also my supplements and am always working on my healthy eating . Sounds like you have great options for motivation and to keep you moving. Stay positive and keep moving. There are some great folks here. So when you need a reach up or to vent we are here for you... Peace and Light.
Thank you, I think a lot of illnesses are dormant in our body and require something serious to bring them out which I believe was Covid, unfortunately there isn’t enough research out there to prove this fact, although my sister did find one ‘lancet’ report touching on this. We are we’re we are, I’m a great believer in making a positive out of this diagnosis by helping others that have PD or any illness , stay strong, thanks Jagdeep
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