Jeffery Hill
Forum Replies Created
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Surgery strikes me as frighteningly invasive. At this time I’m only taking Risagiline and not levodopa, so I have yet to experience the relief that it may provide. I’m becoming weary of my tremor.
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My father developed PD symptoms at the age of 57, and I did at 56. His first cousin also had PD. I was tested for known genetic markers but the results apparently were negative.
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My symptoms are similar to your Dad’s. When I experience stress, my tremor amplifies big time. So stress avoidance is a key solution, and among other tactics I chose to retire early to get that whole work stress thing out of my life. I also exercise frequently, although the closure of gyms due to COVID has caused a wrinkle in that plan.
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I retired early at the age of 60. I was still able to perform my work well, but was finding the physical reaction to stress to be troubling, and I did not wish to demonstrate a decline in my work quality at some time in the near future. In other words, I wanted to go out at the top of my game. I also wanted to enjoy the best possible years of retirement before my symptoms advanced (wasn’t planning on COVID!). My father, who developed PD at the same age as me, chose to work to 63, and in my judgement he cheated himself out of some good retirement time. I did not even investigate the possibility of tapping into long term disability insurance, as I believed this scenario would not qualify. I live in Ontario, Canada.
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I gave up downhill a couple of years ago because I found that my reaction time (initiating turns) was declining, and I didn’t want this to end with an accident. I continue cross country skiing on flat terrain (like frozen lakes) but I’m finding that my technique is deteriorating. One side seems to perform differently than the other, and I don’t lift my tremor-affected arm to the same height as my good arm. I used to be able to ski 2 hours hard, but now can barely do 1 hour. I also continue to snow shoe, which is so far unaffected.
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Hi Ian. A flutter of a tremor in my left thumb was the first symptom that caught my attention. Because my father had had PD I started digging into the list of symptoms and realized that I also had lost my sense of smell years earlier (I did not know this was a PD symptom) and was not swinging my left arm when I walked (while tightly clenching my hand). Like you, my tremor was not constant. It really responds to stress, and disappears as I sleep. I was officially diagnosed just over 4 years ago. Over that time my tremor has expanded to my whole left arm from the elbow to the hand, and I believe it’s now going into my left thigh. Exercise and stress avoidance are the best therapies for me…
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At the age of 56 I developed weakness in my forearms and a flutter of a resting tremor in my left thumb. My father had developed symptoms at the age of 57 so I began to research the list of all PD symptoms. I realized that my 5 year loss of smell, deteriorating handwriting and “frozen” face also fit the bill. I asked my GP for a referral to a neurologist which took a year to come through. At my first appointment I was diagnosed with PD.
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Based on what I’ve read and experienced the routine should have at least 3 components:
1. High intensity cardio. My favourite form is a 60 minute spin class. My heart rate is around 120-160 bpm for most of the class. 3 classes per week.
2. Resistance (weight lifting)
3. Stretching. I do yoga and aqua fit.
I was doing all of this indoors at my YMCA until COVID 19 hit. I dare not go back inside until the pandemic is over. Meanwhile I’m trying to improvise…
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I intend to continue to social distance even if my province (Ontario) opens further. I really miss the gym, but I can’t imagine a more risky proposition at this time. Fortunately it’s finally summer and there are lots of ways to exercise ALONE!
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My May neurologist appointment was changed to a phone call. It went ok but Zoom would have been useful if I had needed to demonstrate movement disorders. My November appointment is tentatively face to face.
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Regarding fatigue, I find that if I work out strenuously (2 hours) every day of the week, I need to grab a nap about every second afternoon. As for pain, I find that if I sit or lie down for any length of time, regardless of the prior amount of exercise, I am really stiff and sore in all of my joints. I move REALLY slowly, with short strides, and feel like I’m 20 years older than I really am. Eventually I “warm up” and the pain subsides but it’s quite frustrating to experience it so frequently.
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Recently I’ve been alternating between Indica and Sativa oil mixed with coffee in the evening. It takes at least 2 hours to kick in. I limit it to once or twice a week because I find the effects to be pretty strong (I’m working to find the optimal dosage). I find that it impairs my balance a little, so I only do it when I know I won’t be moving around much for the rest of the evening (great for watching basketball games). I also find that I feel a bit too groggy to drive the following morning (but I use the subway, so no issue). However, several upsides:
1. Great sleep
2. Great performance in Spin class the following day
3. Temporary respite from hand tremor while under the influence
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Our family just committed to purchasing a puppy, which we will pick up in 4 weeks. It’s an Australian Shepherd, one of the most intelligent breeds out there. I hadn’t considered training her to be my Service Dog. Mary Beth, do you have any information on the specific training involved?
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I have dabbled a bit with Cannabis in oil, vape and dried flower form over the last year. Some of my sources are explicitly labeled as containing mixed THC/CBD (ratio unknown) and some are not labeled.
I have experienced cessation of tremor, but strictly temporary while it’s circulating within me. I also get some of my best sleeps. I tried some during a time when I was experiencing back spasms, but honestly experienced no pain relief.
My neurologist, Dr Susan Fox of Toronto Western Hospital, happens to be leading some studies on the efficacy of Cannabis in the treatment of Parkinson’s. In a recent webinar she stressed that there is a dearth of data on the subject, but from her line of site early indications are as follows:
– No statistically significant effect on tremor or rigidity
– Possible improvements in sleep, pain and anxiety
There is also a long-established concensus that it us useful for situations like cancer treatment symptom relief. Hence the medical marijuana legalization years ago.
Lots of research needs to be done on efficacy, dosing, and THC/CBD ratios
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I was a reasonably committed athlete from high school through my 40’s (running, x-country skiing, weight training etc). Unfortunately I allowed work to become my priority in my later years, and slowly gained weight and lost my conditioning. My PD diagnosis shocked me into action. Work stress was completely incompatible with PD, and the literature on the “exercise as medicine” was intriguing. Something had to give, so I decided to retire at 60 and throw myself hard into exercise. I now work out 2 hours a day, 5 days a week. I tell my friends it’s like going back to school, where the only course is Phys-ed. I’m having a blast and feeling better.
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My tremor started as a flutter in the thumb of my left (dominant) hand about 4.5 years ago. It progressed steadily to encompass my entire hand, and now manifests itself as a very obvious shaking from my elbow to my finger tips, still on the left side only. It’s not constant, and it accelerates dramatically in the presence of stress. Nothing in the legs. I’m not yet taking levadopa.
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I focus on snow shoeing and x-country skiing. Both involve poling and high heart rate, all good stuff. I’ve basically hung up my downhill skis. I find it difficult to initiate turns quickly enough.
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I’m still early stage, and still driving, however I’m carefully planning long distance drives:
1. If I leave in the morning, OK to drive alone
2. If I leave after lunch, I prefer to have a co-pilot with whom I can switch if I get drowsy
3. Never start a long distance drive in the evening. Losing confidence in night vision.
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Andrew,
So much of what you wrote resonates with me! I too am a life-long exerciser, and fortunately I love it; it’s not a chore. Parkinson’s motivated me to change my lifestyle. By retiring I accomplished two things: reduce stress (which directly drives my tremor) and free up time for exercise (which I consider my new career). You’ve convinced me that I have to get going on the yoga. I have a stiffness that runs from my back into my hips that I find hard to shake. And your point about the sweat makes me laugh: at the end of my 60 minute spin class there’s literally a puddle on the floor. It’s almost embarrassing, and I have to get down on hands and knees to clean it up before leaving!
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In summer I do a modest amount of outdoor cycling and gardening. Now that winter has arrived in Ontario, a lot of my exercise has moved indoors. I’m hitting the gym up to 4 days a week. I start with a 60 minute high intensity spin class, followed by 45 minutes of either weights/stretching or aquarobics. On my non-gym days I try to get in at least 10,000 steps of walking. I plan to add yoga and/or boxing as the winter progresses.
I’m usually pretty tired, particularly on the second day of a back to back. (Hey, when do I get to do “load management”? 🙂 )However I’m convinced that this work helps to alleviate cramping in my arms and legs.
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My neurologist has never referred to stages in our discussions, but she does inquire about each of the major symptom areas on each visit (tremor, rigidity, balance, sleep, constipation, etc). The good news is that the symptoms don’t seem to be advancing very quickly since initial diagnosis 3 years ago, which I credit to a big up-tick in my exercise routine, and a reduction in stress facilitated by retirement.
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I’m Toronto as well.
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I dream a lot, though inevitably I forget the plot soon after I awaken and my wife tells me that I’ve become a little more “chatty” in the last few years. I sometimes wake myself (and everyone else) yelling in my sleep. Some mornings I find a wall of pillows between my wife and I (she would prefer that I don’t slug her in my sleep).
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I’ve been taking Rasagaline for 3 years since my initial diagnosis. The rationale was that it has protective properties. There’s no way to know if it’s working because you can’t do a test/control within yourself! However my symptoms are not progressing rapidly (good news) and I continue to defer starting levadopa.