I find that aside from the major problems we all know about are many little quirks that can or don't apply to everyone...here are some of my finds...which I have looked up for verification when possible:
( if you recognize yourself I am gonna feel so much better)
1) I am extremely warm most of the time....and when I go outside do not seem to feel the effects of hot and cold weather normally...
2) I was not much of a "sweater"...but since PD I have a lot of perspiring
3) read info on some of the meds that says it can cause discoloration of the urine which can stain underwear (thanks for that info, was worried alittle)
4) I have invisible creatures that crawl on my hands or arm (just that tiny little flex of the nerves)
5) I am the original pinball machine ball in the am B4 meds...touch all the walls in the hallway...LOL
6) I have had some problems that lead my neurologist to think I could B developing carpel tunnel...( could also just be the PD; as I am a "lefty" and I have it mainly on my left side) but crocheting daily is one of the things that I think keeps me connected...at rest my arm can do alot of jerks...but crocheting its a champ. won't consider giving it up..until I have too...also a great creative outlet ( won 'best of class 'and first place in granny sq.afgan class @ the local fall fair this year)
7) for whatever reason seem to have this overwhelming desire whenever we travel very far to sleep...invested in a neck pillow for that reason...my seat is on auto-pilot for reclining. ( when I started Nuvigil for sleep apnea symptoms I was able to be awake for alot more of our trips periodically to my husbands VA hospital 120 miles away...but am currently off it due to the donut hole in insurance) My hubby refers to it as my "speed" as he thinks it makes that dramatic a difference in my activity level. i admit I am able to get thru the day with usually only one nap on it...B4 I was napping 3 hours after getting up, and again in the afternoon...and sometimes early evening. Neurologist said now that some of us have been on CPAP for awhile they are able to get some feedback and discovered our bodies do not automatically forget how tired they have been from lack of recuperative REM sleep...and in the case of PD where I still do not get REM sleep often my body still is tired.
The CPAP is a blessing for me as it has stopped my restless leg symptoms so far...have quit using my Ropininole daily; altho I have some on hand just in case.
Written by
Cleo48
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1. Yes, I used to be a shiverer, and now I'm usually too warm.
2. Sweat?? It's embarrassing! My scalp and face drip with the least exertion. A couple of my meds have "excessive sweating" as a side effect. Oh, joy!
3. So that's why that happens!
4. Nope!
5. Not yet...mostly stiff and slow in the a.m.
6. Yoga helps most of all, and I can still type pretty well.
7. My husband constantly nudges me to stay awake during concerts and lectures and movies. If I have something engaging to do in the car, like hand sewing or embroidery, I can stay awake. Otherwise, it's lights out!
I found that Repnerole caused sweating - have since stopped using it...
You're not alone. I too have a broken thermostat. Loss of smell is my big complaint, along with this tiredness all the time. And then there is of course the shaking.
I have read that PD can cause "hot flashes", mine occur about the same time each evening. I had already gone through menapuase and all those hot flashes, these are not as bad, I usually have to remove most of my clothing to cool off, but my whole body will be covered in sweat!
I was into every sport growing up and was a runner most of my life. I also love to work in my yard, I will have a towel with me when I am in the yard. Profuse sweating is another Quirk that I have read about since being diagnosed.
Another one that I read about recently, oily skin. I shampoo my hair and within 12 hrs. it is very obviously oily. My face is the same, I had wondered how I could be 50 and have oily skin and blimishes! Now I know!
I have carpal tunnel, it started when I was pregnant with my son 20 yrs. ago. I actually thought the tremors were a result of the carpal tunnel before the more advanced symtoms started. It is interesting though, my left side is worse for both the PD and the carpal tunnel. I also have thoracic outlet syndrome in my left shoulder, that is why my hand specialist thought the carpal tunnel was worse on the left side. I was a gymanst through college, I attribute both the thoracic outlet and carpal tunnel syndrome to that.
I wish I could sleep!!
One question I have and keep meaning to ask my MD if there is a correlation between a history of migrain headaches and PD. I have had a history of migrains since I was a child and they were clearly vascular, the color would go out of my rt hand and it would be numb. I had severe pre-eclampsia with pregnancy, there is a correlation between migrains and pre-eclampsia.
Ahh, forgot the crawling creatures! Some meds can cause it, but I had the visual hallucinations before diagnosis. Mine were large bugs crawling on the floor, I saw spider webs that looked like we had decorated for Halloween. There was another time that I was trying to find my house shoes and I saw this massive stack of shoes, when I reached for them they were not there!
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