Jeffery Hill

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!

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.

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,…[Read more]

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…[Read more]

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?

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 so…[Read more]

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 li…[Read more]

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…[Read more]

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.

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.

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 conv…[Read more]

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…[Read more]

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…[Read more]

I’m Toronto as well.

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).

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.

I disclosed nearly 2 years ago and was treated no differently before or after.  8 months later I announced my plan to retire in 6 months.  The company worked with me to recruit and train a successor, and I was able to retire on schedule.

Like those above my first symptom was loss of smell years ago, but I treated it as a nuisance and did not bring it up with my doctor.  4 years ago at age 56 I felt weakness in my forearms, a slight tremor in my left thumb and deteriorating handwriting.  I secured an appointment with a neurologist within a year and she confirmed PD.  My father al…[Read more]