What Is Helping Me the Most in My Parkinson’s Battle?

What Is Helping Me the Most in My Parkinson’s Battle?

No two Parkinson’s disease patients are alike

I am slowly coming to realize that each diagnosis of Parkinson’s disease (PD) is unique. PD patients suffer different symptoms and different rates of disease progression. Some remedies work for some, and not for others.

In many cases, those of us with PD are left to our own devices. Doctors can only suggest options for us. As for medications, in the end, we must listen to our bodies very carefully to determine what will and what won’t work. The ultimate goal is to find the right “cocktail” of drugs so that PD symptoms are masked and there are few or manageable side effects. Sadly, my experience has been that changes in medications and dosages have not given me aha! moments where I can see a significant reduction in symptoms. If there are any improvements, they are extremely subtle.

Is it the weather?

Many of my fellow PD sufferers have shared their struggles with the appearance of a possible new symptom or worsening of existing symptoms. Is it something we ate? Or do we chalk it up to a bad PD day? Could it be fluctuations in barometric pressure or is it part of the normal aging process? Is our disease progressing or have we taken our medications at the wrong times? Should we have eaten more food or had more water with our pills? Did we get enough sleep or are we too stressed? The list goes on and on. With PD, there is so much uncertainty. It is very difficult to determine what is helping my symptoms or slowing the disease progression, and what is not.

What do I think has helped me the most?

I leave no stone unturned in my efforts to combat this disease, especially when it comes to exercise and movement alternatives.

In September 2017, I started Rock Steady Boxing twice a week.

Boxing has been one of the most effective tools in my arsenal for fighting PD. It has given me the confidence to feel like the athlete I once was. Boxing helps me improve my stamina, speed, and strength, and the participants (everyone in the class has PD) offer great support and camaraderie. As I set out on my one-hour commute to Rock Steady Boxing class twice a week and put on my hand wraps and gloves, I truly feel like a warrior getting ready for battle.

helping
(Photo by Michael Heller)

Boxing and movement, in general, have helped me the most in my daily struggles with this disease. In no particular order, I also credit the following with helping me in my war against PD:

  • Physical therapy once a week (for balance)
  • Massage once or twice a week (for stiffness and rigidity)
  • Yoga two times per week and meditation for 20 minutes up to five times per week (to train me to be in the moment, and not focus on the prognosis of this disease)
  • Attitude adjustment (accepting that I have this disease and counting my blessings)
  • Sinemet (carbidopa-levodopa), medication to relieve internal tremors

Ask questions and share your knowledge of Parkinson’s Disease in our forums.

Treating PD appears to be all about finding the right combination of some or all of the following components:

  • Exercise
  • Diet
  • Supplements
  • Prescription medications

A formula for one PD patient may not work for another PD patient, and the plan must continuously be tweaked. As difficult as it is, we must reduce our stress levels. I believe both good and bad stress exacerbate our symptoms.

In a future column, I will share some of my experiences with the Rock Steady Boxing classes.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson's Disease. Now, in addition to Steve's story, I am telling my own.

14 comments

  1. ART DUBOW says:

    I volunteer at a weekly ping pong group for Parkinson’s Disease patients. I found your article to be enlightening and uplifting and shall pass it on to our ‘Pongers’ who can all benefit from it.

  2. Carolyn E Huggett says:

    Hi Jean,
    How lovely to read your article. I agree with you that exercise is the key and something that stimulated the brain and self esteem. I also have been an athlete and found it very hard waiting to find out what this was that was happening to me. Now that I know I am back to hard exercise although many say that at 67 I should be resting more. Resting makes my symptoms worse and I know my body well enough to notice when I am doing too much. My husband and I have competed in Ballroom dancing around the world for many years. Sadly that has had to finish as the stress on body and mind was proving too much but we dance every week and have taken up Argentine Tango. In addition to walking 2-3 miles every day with the dog , the gym and my favorite activity Tai Chi and Tai Chi Sword (another warrior activity) I am kept very busy and don’t have time to moan about my stiffness and problems. I am adding weekly massage now and instead of medication go weekly for acupuncture which has reduced the internal tremors. As you say everyone is different but the common thread seems to be exercise and if you have been very active in the past you should keep up as much as you can. Where for the last 6 months everything was getting worse and new symptoms popping up now I can say that it is in a holding pattern for the moment. Thank you for confirming my understanding of the need for meaningful activities.

  3. Luann Voss says:

    My dad had Parkinson’s Disease and now my mom does. I agree with the physical approach. My mother sits on a chair and pedals an Airdyne bicycle from behind and that helps. Also, water therapy is helpful. Think a piece of equipment that would move limbs in a coordinated manner for patients who can no longer move well is waiting to be invented. Maybe there is a way through a specific exercise to burn those protein deposits in the brain.

    • Jean Mellano says:

      Luann, Thank you for sharing. It is a challenge finding that specific exercise that will help, we all react so differently and what works for some does not always work for others.

  4. Hi Jean, fantastic article, truly inspiring…
    For me: Exercise….Boxing one-on-one class Monday’s; Tuesday is exercise physio, Wednesday/Thursday is beach/fishing time along with Kinesiology / Occupational therapy, and Friday is Pilates, Saturday is 5K Parkrun followed by Sunday a rest day…walk on the beach time.

    I take 21 Prescription medications each day…and sometimes i feel good, with most times i feel bad. Staying active both mind and body is what drives me each day. At the young age of 55, I need to be as active as I can 🙂

    I am known as The Parky Park Runner
    https://www.facebook.com/parkyparkrunner/

    • Jean Mellano says:

      Hi Stephen Thanks for sharing, you certainly keep pretty busy! I too feel bad more than I feel good, still trying to fine tune my ‘cocktail’ of therapies :-)Does fatigue affect you?

  5. Henk Stegeman says:

    Great article Jean, and what a picture! Wow!

    Rock Steady Boxing is the training I picked up now 5 weeks ago. Here in Almere, a relative new town near Amsterdam, Holland. Twice a week an hour and we (the small group of attendents) benefit from it enormously. My Parkinsons is officially 11 years old, but first signs were there more than 20-25 years ago. In this whole “career” or must I say battle against the slow but steady breakdown of ones entity, think I never found anything more motivating than Boxing. I keep on doing my daily brisk walks (use nordic walking poles technique), and spend most of the rest of the time in my “music room”, laying down tracks, pieces, musical idea’s all as a happy pastime (it’s taking your mind on a pleasant road and you don’t even think about all other things). Playing improvised music is known as benificial to the brain, besides that my guitar, drums and keyboards keep my arms, hands and fingers in good condition.
    It’s often no more than “just pretend or even make belief time”, I know, but I don’t care. I don’t think we should. That’s the best way to keep on going (when the going gets tough).
    H.

    • Jean Mellano says:

      Thank you Henk. I too see all the participants in my Rock Steady class benefit greatly from it. Boxing is incredibly motivating and is, I believe, the best medicine for PD. My next two articles will be about my boxing experience. It is interesting what you say about instruments. One of my fellow boxers says he has no tremors when he plays his guitar. I am considering taking up learning how to play the ukelele. I do know that living in the moment activities are wonderful. I do find that when I can immerse myself in art, whether collage, zentangles or my graphic arts work on the computer, time flies and I dont have time to think about PD. Keep moving Henk!

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