Jeffery Hill
Forum Replies Created
-
I use a Garmin fitness tracker on my wrist and pay close attention to my daily sleep, heart rate, daily step count and weekly intensity minutes. I’ve observed some important changes in the past 4 years. Compared to the period just before COVID (which kept me out of the gym for 3 years), I find that I’m not able to match the peak heart rate that I used to achieve during Spin classes. I usually top out at 117 bpm vs 126 pre-COVID. Basically my muscles won’t deliver, and I’m topping out at a lower level, before my cardio system maxes out. Also, my sleep is deteriorating, and I now get only 4 to 6 hours per night vs 6 to 7 prior to PD. I was diagnosed in 2016.
-
I concur with the other respondents. Parkinson’s has caused me to react much more dramatically to various stressors, and I am much more intolerant of extremes in temperature. Fortunately I live in a reasonably moderate climate (Toronto, Canada) where it’s fairly easy to dress for comfort at both ends of the scale.
-
I don’t find the differences between “on” and “off” to be very dramatic, but I’d summarize my experience as follows:
Within 30 minutes of taking my C/L dose (which is every 4 hours between waking and sleeping), my back and thigh muscles start to loosen up and my hand tremor is reduced (but not always eliminated). As I near my next dose time, the symptoms ramp up a little.
Also, I find it very helpful when my dose time lines up with the start of a vigorous exercise session like spinning or outdoor biking. I have some of my strongest performances under those conditions.
-
My pain is more in the upper back. It interferes with sleeping (I’m mostly a side sleeper). I get relief within 30 minutes of taking my C/L dose. I can actually feel the back loosening up in real time.
-
I lost my father to Parkinson’s in 2005 when he was 72. It wasn’t caused directly by Parkinson’s per se, but the symptoms frustrated him to the point where he announced one day that “I can’t do this anymore” and he stopped eating and drinking. Didn’t take long.
At the time I had no idea that I too would develop PD. However I took lessons from his experience, one of which was to exercise like your life depends on it.
-
I’ve hated the heat since long before Parkinson’s. Anything over 25C makes me uncomfortable and saps my energy. Love the cold because you can adjust simply by dressing. I’m thankful that I live in Canada!
-
Timely post! My sense of smell declined dramatically years before I noticed my second symptom (tremor). One of the first “categories” of smells that I lost was the scent of flowers. Every spring I test it with the newly bloomed lilacs found throughout my Toronto neighbourhood. This year, to my astonishment, I was able to smell the most fragrant varieties for the first time in years! I have no idea why it returned.
-
My head jerks spontaneously about an hour after I take my morning pill. It lasts about a half an hour. I’m not aware of what can be done about it. It’s a nuisance, not a crisis.
-
Shortly after my diagnosis at age 57 I made a plan to retire by 60. This was driven by a number of factors. First, at that time, I was suffering minimal effects, so there was no rush. However, my father was diagnosed at the same age as me, and I observed that by delaying his retirement to age 63 he missed a period of decent health that would have been better spent retired, and I didn’t want to repeat that history. As I reached 59 I was finding myself struggling to handle the work-related stress that used to energize me, so I knew it was time. I met with my manager and we recruited a successor to transfer knowledge on my last project. It worked out for everyone.
-
I agree with John. I feel the neurologist can make much better assessments face to face. I’m on a 6 month appointment cycle, and it works out that we’re doing 50% fact to face and the rest remote. This is working fine for me.
-
I would say I’m still moderately athletic. I walk my dog 12,000 steps a day, and go to the gym twice a week for spinning, weights and yoga. In summer I ride my bike outdoors and kayak. In winter snow shoe.
HOWEVER, I do all of the above with notably reduced speed, strength and endurance compared to my pre-diagnosis life (2016). I gave up downhill skiing due to my fear of slow reaction times, and my skill in cross-country skiing has deteriorated to the point where I may just give up. My knees failed me 10 years ago so I had to give up running. No problems with balance…yet.
-
In the seven years since my diagnosis I have been pretty steady +/- 5 pounds. When I get the opportunity to engage in my full exercise program (pre-COVID) I drop. When I over-indulge in eating (Christmas) I rise. I don’t feel Parkinson’s has influenced my metabolism.
-
Many similarities to those above:
First symptom was loss of smell years before any other symptoms. Although my dad had PD he didn’t report this symptom so when I got it I didn’t make the connection to PD
Next was tremor, starting in one thumb and spreading to the entire forearm. That’s when it clicked for me, and I asked my GP for a referral to a neurologist
Handwriting is small.
Voice is softer
Poker face..no expression.
Tremoring hand quits swinging when I walk and I clench it like a claw.
Physical exhaustion. Can’t walk much more than 5km at a time or work outdoors more than 6 hours a day. Feels like I’m wading through a meter of water at the end.
I do everything slowly. Walking, dressing, working. I’ve tracked my cycling speed for 10 years and I’m 30% slower than I used to be. When I see my reflection in store windows while walking down the street I see someone 20 years older than my actual age (63)
Tired during the day..easy to fall asleep, although not as big an issue on days when I keep myself busy
Sleep disruption at night, both trouble falling asleep and waking up frequently
Inability to handle stress. My whole body shakes and I become irritable and snap at people. Fortunately I’ve insulated myself from a lot of stress by retiring.
Cramping in the feet
Recently developed dyskinesia (head bobble)
Fortunately I have not developed most of the non-motor symptoms like constipation, apathy, depression or hallucinations. My Dad had many of those.
-
Finding ourselves with time on our hands, and missing our last dog, we got a new one just as the March 2020 lockdown descended (coincidence). Our new Australian Shepherd, Poppy, has lots of energy, and we walk 10,000+ steps every day. She also loves frisbee, soccer and tug-of-war. This has helped me keep stiffness at bay.
-
My father had Parkinson’s. He first noticed symptoms at the age of 57. I noticed my tremor at 56, but looking back I realize that I lost most of my sense of smell many years prior to that. I was tested for known genetic markers, but the results were negative. My father was possibly exposed to pesticides when he worked on his aunt’s farm as a teenager. I am not aware of any acute exposures that I may have had. My father’s cousin was also diagnosed with PD.
-
Early in my diagnosis (2016) I had no trouble with sleeping. However in the last 2 or so years I have had quite a bit of trouble. Either I take hours to fall asleep, or I wake up in the middle of the night and take hours to fall back to sleep. My father, who also had PD, had the same symptoms.
-
I know I have facial masking. For instance, my manager at work was slightly frustrated by my “poker face” because he could never tell what I was thinking, and I didn’t seem to react to anything. However on a moment to moment basis I am not conscious of it because I’m not looking at myself in a mirror. Therefor I don’t spend any time trying to deal with it. I too have heard that speech therapy is a route to go for improvement.
-
I subscribe to the theory that those of us with PD have a reduced capacity to handle stress, not that stress itself has increased. I find that when anxiety and stress build, my tremor just starts hammering and I feel overwhelmed and exhausted.
When I was diagnosed in 2016 I had an idea what I was in for, because my father had PD. I set about to plan early retirement precisely because I equated full time work with stress. I was able to make the break in early 2019. As I had hoped, stress levels did drop, and I was able to throw myself into exercise, gardening and trip planning. I consider myself very fortunate.
I’m still very susceptible to stress when the littlest thing goes wrong (i.e. an appliance craps out or some other unexpected financial set-back) but I recognize it for what it is, and coach myself to get through it.
-
Still driving (6 speed manual no less!). I only do long trips if I can start in the morning or have a partner to switch with if I get tired.
-
The key advice was exercise. It was helpful in relaxing the muscles and joints that has become cramped throughout my body. It took about 6 months of cardio, strength and stretching to get there. I was on a real roll until COVID closed the gyms, and have relapsed somewhat.
-
I thought my first symptom was a fluttering tremor in my left thumb at the age of 56. When I researched the list of Parkinson’s symptoms I learned that my loss of smell 5 years earlier was on the list too!
-
I’ve lost speed (I am SO slow at everything) and endurance (can work no more than 4 hours a day).
-
Coincidentally we got a new puppy in the week of the first lockdown. I’ve never walked so much in my life!
-
Hi Alan,
If you don’t already have one, consider getting a dog. I mean a really active dog. I got an Australian Shepherd. She demands at least 3 hours of work a day. I’m averaging 13,000 steps a day. Just need to supplement with some high intensity cardio, weights and stretching.