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Sherrie

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About Sherrie

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  1. Sherrie

    I think I have parkinsons

    Acupuncture has helped my sister with migraines and I am trying mushrooms for neurological issues. Medication side effects have grossly troubled our diagnoses in the past. Comedy and a drastically simplified life have been vital for dealing with the emotional strain of chronic illnesses. I hope you can find ways to de-stress your life.
  2. Sherrie

    Is it PD or something else

    Wow! So sorry for your distress and pain. My sister has ED and I have PD. She gets migraines and I used to but pretty much just get auras now if I go to bed with ice covering my head. She gets acupuncture every week. We both make it a priority to have a relaxed, humor filled meaningful life in all ways possible so that we can cope with the disability. She’s wheelchair bound her joints are so bad. I frequently wonder if the two problems were connected but the ED is hereditary and the PD doesn’t seem to be. What is OH and POTS?
  3. Sherrie

    http://pdrecovery.org/updates-latest-research/

    Wow! So has anyone tried talking to God until they felt safe and noticed their symptoms improve?
  4. Sherrie

    I have a weird leg

    Thanks for the words of encouragement. I will take your advice and hunt for job ideas on the forum.
  5. Sherrie

    Internal Tremors

    I called mine shivering. Or crawling under my skin. My leg crawls(invisible) and clenches(visible). My whole body gently shivered like I had the flu for about three months. Other people were rarely aware of it.The shivering came on years after other motor symptoms and stopped immediately after starting CL.
  6. Sherrie

    Freezing when using computer mouse.

    Have tried squeezing therapy putty in left hand while using mouse. It’s helped for a short while.
  7. Sherrie

    I have a weird leg

    Hi there, I’m going to be putting a lot into the ether because I need help. I’m 49 and have spent most of the last 22 years homeschooling children and caring for elderly parents. I have very little job history. I have an associates in accounting and finished most of my general ed credits. I am currently diagnosed with drug-induced Parkinsonism (this might be a temporary diagnosis since I have most of the typical motor and non-motor symptoms so my MDs feels likely it’s idiopathic; she’s monitoring me and I respond well to CL). Over the last eight months I’ve separated from my husband, lost my income and am about to lose my home and (probably) pets. I’ve been hunting for a job and getting discouraged. Here is what I would like help with: job ideas. I’m eligible for training and education if only I can get serious about a direction. Every time I think I know what I want to do, my body does something to make me feel unsure. Usually it’s my weird leg. When I do anything that requires focus and coordination my left leg acts up. Imagine having a bunch of electrodes on your leg and then putting a large plastic bag over it and filling it with bugs. As soon as I start folding the laundry or cutting the meat or typing or using a mouse it’s like the bug start crawling all over my legs and someone starts randomly firing the electrodes. With strong motivation and all other circumstances being ideal, I can usually hang in there for about 15 to 20 minutes before I want to scream. I’ve given up driving because it’s too distracting. Since starting levodopa that’s been my worst problem. I have a few minor problems with speaking and my handwriting is terrible. And I’m not as efficient as I used to be (forgetful). Also I can’t stand still unless I’m leaning against something (I sway as a side effect). Oh and anything emotional (good or bad) makes me cry but since crying makes me laugh, it evens out (a fun little condition). The career counselor I spoke with was overwhelmed, poor dear. I think I need the perspective of someone with Parkinson’s. On the useful side I’ve got all those beneficial qualities that come from good character and intelligence 😁. I’ve read so many of your posts I don’t feel like I’m talking about myself to strangers. How have you found meaningful employment post Parkinson’s? What helped you succeed going back to school or training? What should I be looking for and thinking about as I make this decision? Is there a relevant thread I’ve overlooked? I know there’s a thought out there that will spark my brain!
  8. Is there any news about when we can get this test?
  9. Sherrie

    Welcome to the club

    My insurance denied the datscan twice. The MDS thought that since I responded well to levodopa it’s likely idiopathic and a datscan was warranted but my insurance company did not agree. Aside from occasional times of apathy and exhaustion I keep busy and happy. A lot of aha moments have come from this forum and support group.
  10. Sherrie

    Tremor when nervous?

    Within minutes of talking to a certain person, I would get a violent right hand tremor— I am almost exclusively left side symptomatic otherwise! I used it as a reason for changing a relationship status and taking Cognitive Behavioral Therapy and assertive communication training. The assertive communication was revolutionary! My whole life I had thought I was a firm yet fair person only to find out I’m a pushover!😁. My children were shocked I hadn’t known how passive I was. Now I appreciate my nervous tremor because it’s an indicator to take care of my needs and I can say “Ooh, look at that tremor, we’ll have to discuss this later.”
  11. Sherrie

    Welcome to the club

    I was recently diagnosed with drug induced Parkinsonism. When I got that diagnosis, I was very excited because I knew it meant that my symptoms were going to go away. Even though I’ve been off the suspected medication for over two years. Then she told me, no, it’s not going to go away. Sometimes drug induced parkinsonism unmasks idiopathic Parkinson’s and it’s likely that’s what is happening with me. I understood her to mean that we just have to wait and watch. Like you, I’ve been struggling with acceptance, apathy, diagnosis, medication,… Of the dozen or so books I’ve read about Parkinson’s, my favorite is Brain Storms by John Palfremen. It answered so many of my whys. I believe it it was in his book that I read that of people autopsied within the first five years of a Parkinson's diagnosis, about 50% didn’t actually have idiopathic Parkinson’s. That was a horrible accuracy rate and explained why so many scientific studies had trouble. If half the candidates in a research study didn’t actually have the right disease!! Knowing that helps me to be fine with my diagnosis even though I’m pretty sure it’s wrong 😆. I know she is watching to see how my symptoms progress.
  12. Sherrie

    Akathesia, is this present in your off?

    Another swayer posted that taking 1/4 tab every hour and a half controlled swaying. I tried it yesterday but every two hours because, frankly, the math was easier. I didn’t have to stand much, but when I did,the swaying was mild. It was strongest 20 minutes after a dose and also right before a dose. I had good symptom control all day.
  13. You had swaying with c/l and I’m reading everything I can about that on the forum. Did you get it is soon as you started taking the c/l? It doesn’t bother me too badly since it only happens when I’m standing still. I can take half a pill twice a day. I just keep moving! How did it progress for you? I guess it must’ve got pretty bad since you had surgery to stop unwanted movements. 

  14. Sherrie

    Antidepressants and Rasagiline and Pramipexola

    Do you know how soon after taking the carbidopa/levodopa that you started swaying?
  15. Sherrie

    Akathesia, is this present in your off?

    For me this swaying could not be dyskinesia due to long-term use of medication because I got it the first day I started my full dose after one week of half a dose. I’ve only had a tremor for four years. I’ve had balance problems for two years. This past year was the first year that I started being stiff and slow. I’ve only been trying PD medication for a couple months. Also I understand that akathisia can affect people differently. I had akathisia from taking a pill called Latuda. It was not at all like the “mandatory “ swaying I experience now. It was a feeling of intense misery and anxiety making me feel like I needed to move, I needed to change positions, I needed to go anywhere to do anything to get away, to crawl out of my skin to get away from my body. In the end I took the latuda right before bed so I wouldn’t experience it. The swaying doesn’t come with any anxiety feeling and if I tap my foot it doesn’t happen. It’s as if tapping satisfies whatever need the swaying was for.
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