William Palmer
Forum Replies Created
-
I chose to retire after forty years of college teaching. Within six months my symptoms started–extreme lightheadedness, balance and walking problems–and for a week my feet slapped the floor like clown feet. It took two years for me to be diagnosed, which meant I received no treatment. It’s not uncommon for people to get sick after they retire. Sometimes I wonder if I had kept teaching for a year or two more, would my PD have waited?
-
Early on in my PD journey, before I was diagnosed, I clomped like a horse for a few days at home: my feet smacked against the bare floor. This happened before my balance grew worse.
-
Yes, I keep up with daily PD information sources like Parkinson’s News Today. Sometimes I feel overwhelmed with information–as if I have eaten too much. Researching can be addictive and can interfere with daily enjoyment of life. I’m trying to find a balance.
-
I took a webinar with poet Ada Limon who mentioned that she and her husband loved watching Detectorists during the pandemic. I just watched its three seasons. It’s a British show on Prime (you’ll need to do a search for it) about two mild men who have hobby of metal detecting through fields in rural England. It is quietly comedic, touching, and wonderful.
-
My complained that my pillow smelled. A new pillow helped address that. But for the past year I have had scalp acne, especially around my neck and ears. My neurologist pointed out that people with PD often have oily skin on their scalps. I never had this before my PD journey. My dermatologist prescribed Clobetasol Propionate Topical Solution ESP 0.05, but it has not helped. I will see him again for Plan B. Today I went to Rite-Aid and bought some stuff that teenagers use. Maybe I am becoming a teenager again.
-
I love Lori’s creativity and optimism here. She expresses truth yet shines a needed glow on it. Thank you.
-
My speech changes in the morning. An hour or two after I take my carbi-levo pill (8:00), I have trouble saying multi-syllabic words. This wears off by 11:30. Then I speak normally again. For this reason, I try not to make any doctor appointments or go anywhere in the morning.
-
Same happens with me on my elliptical. I can manage ten minutes. If I try for much more, my walking is labored for an hour or so. Same happens when I mow the lawn–it’s very hard for me now after 15-20 minutes. I take breaks and do what I can. I haven’t found anything to be done for this issue. But if I go to town to shop for groceries, I make sure I exercise when I get back. Otherwise, my walking will become very labored in town. Fatigue sets in fast. Realizing this has helped me not ruin my trips into town.
-
Traverse City, Michigan
-
Yes, I do. With PD, my brain chemistry has changed. Antidepressants make me feel worse. I can’t tolerate cannabis anymore, which depresses me–smoking pot always gave me a lift. Now it makes my walking and balance worse. I can’t tolerate alcohol for the same reason. I see a great therapist. I pay close attention to being grateful. I practice mindfulness. I try to make art by writing and publishing poems. This helps. I’m working on my depression, not letting it define me. It’s a part of PD, as fatigue is. But I am more than both of them . . .
-
I apologize for adding a few more thoughts. I like how Marlene frames PD as an adventure. This is positive. For a while I thought I was doomed with PD–but I let that negativity go. I’ve determined that PD is amazingly variable. One man in my support group, who has a tremor in his right hand, bikes 20 miles a day. When I mow the lawn for an hour, I can barely move for the rest of the day; yet I have no tremor. I live on a bay of Lake Michigan but don’t have the energy to kayak–I’m holding out hope I will.
-
We had some family over this weekend that we haven’t seen since Covid started. My sister-in-law and her husband both saw me sitting and said, “You look fine,” but they didn’t ask me one question about my PD during three days. I wanted to share what is going on. Their children, who are adults, never asked about it either, even though I was walking with my cane slowly and carefully. I would like people who care about me to ask about my PD. Maybe they are afraid to or they don’t know how. I’m not sure if I should start talking about it unless someone asks . . .
But I would tell non-Parkinson’s patients my main motor problem is walking and balance–it started two years before I was diagnosed with PD (last year). Lightheadedness compounded it, but that seems better now, perhaps since taking Carbidopa-levodopa. In the morning after I take my first pill, my speech changes: I have trouble saying multisyllabic words for two hours. This upset me at first because I used to stutter badly as a boy. I also am prone to depression and have found that I can’t tolerate antidepressants. My brain is different now–I can no longer even drink a full beer or glass of wine because it makes my balance/walking much worse. Marsha, a friend in my local PD support group, says we can “learn to work around Parkinson’s.” This has become a mantra for me. I am trying to work around Parkinson’s.
-
Heat and direct sunlight make me feel much worse, I find. It accentuates my fatigue when I mow the lawn, which I need to do now in two or three sections with breaks in between. If I come into the house with air conditioning, this helps a lot. A month ago I went raspberry picking at noon on a hot, sunny day but had to stop–it quickly wiped me out.
-
For a year now I have used a gummy to help me sleep. Not any gummy will do. This one is well-known as a sleep aid: Elderberry Gummies 4 : 1 THC : CBN. It is indica enhanced. It is made by Wyld. Ten gummies come in a container (it sells for $18-20; you can get specials too). I get the high dose version and cut each gummy into four parts. One part is all I need. I go to bed, eat the gummy (which tastes great with no cannabis flavor), read for 10-15 minutes until I start yawning. That’s it. A few nights it hasn’t worked; that’s okay. But this is worth trying.
-
Beth, it doesn’t seem healthy for your children and grandchildren to ignore your Parkinson’s. I would feel deeply hurt and confused also. Please consider seeing a therapist to explore this issue. My therapist has been helping me during my PD journey.
-
I flinch now when my wife coughs or sneezes. Even when she puts a teacup down on the granite counter, I flinch. My flinching has become a habit. It’s not good for our relationship.