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Sherrie

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About Sherrie

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  1. Sherrie

    I have a weird leg

    It’s funny you should say that. I have a cat and three rabbits from the shelter in addition to our very old Labrador! A large part of my life is caring for animals.They definitely get me out of bed. I have also joined a lovely group of women in my neighborhood for community service projects once or twice a week. And I read or play cards with the little neighbor boy nearly every day. And even though she’s in high school, I pack a lunch for my daughter on school days. Since my husband moved I have also taken over care of his small garden. With some thought and planning I putter around slowly about four hours a day. Doing something nice for someone else every day is the thing that keeps me feeling relevant.
  2. Sherrie

    Lost waiting for a diagnosis

    So many things in common! Bipolar,antipsychotics, initially inconclusive symptoms, long waits for appointments. It took four years from the first time I started thinking “something is very wrong!” until I got a drug induced Parkinsonism diagnosis. Whatever your diagnosis ends up being, exercise, self-compassion, support groups(people with Parkinson’s are very welcoming to you as you wait for a diagnosis) are all good. I read a great book about Parkinson’s (Brain Storms by Jon Palfreman) that said about half of the people diagnosed in the first five years get the wrong diagnosis, so doctors are very cautious especially since the symptoms develop so slowly and differently. My personal favorite treatments are comedy of every kind and these dopabean pills (Solaray brand with enteric coating). I take two every couple hours when I want to move (at least 45 minutes after eating). Doing something nice for someone every day and walking briskly are my second tier coping strategies. Seriously, find what makes you laugh! Even having a movement disorder is sometimes funny. https://parkinsonsdisease.net/living/pd-pundit-adaptation/ P.S. If you’re thinking of trying Dopabean ask your doctor. Also some people on the forum have tried it and got no benefit at all.
  3. Sherrie

    Internal Tremors

    The dopabean with enteric coating I’m taking help get rid of the jittery shivers for me.
  4. Sherrie

    Where to get the best quality of Mucuna puriens?

    A cheaper brand didn’t work for me. It hasn’t got think the enteric coating on the capsules. Does anybody know if it’s vitally important to have the enteric coating? The only other differences I can see in the brands is the cheap one lists microcrystalline cellulose in the ingredients and doesn’t use the word “guaranteed “ in the dosage content section. I really think the Solaray brand is working for me because I drove around doing errands half the day and even worked out while using it and I barely felt shaky at all. Please let me know if anyone else is trying enteric coating to take mucuna.
  5. Sherrie

    Mucuna Extract vs Mucuna Whole Herb

    I just started experimenting on myself with MP. I’m newly diagnosed but have had tremor for over four years. I got dyskinesia right after starting C/L. It gets bad as I go on and as I come off a dose. I’ve always been very sensitive to meds. That runs in my family. 2 capsules of 333mg/ea velvet bean (guaranteed 15% L-dopa) lasted me three hours on a good day in the morning. I felt completely normal for those hours. At 3 hours 22 minutes I got stiff and body shakes. From all I’m reading in the forum, I’m getting very little actual l-dopa. But it worked.
  6. Sherrie

    Where to get the best quality of Mucuna puriens?

    I’ve been experimenting with mucuna this past month. I bought a bottle of Solaray brand DopaBean. Each capsule has 333mg velvet bean including 50 mg(15%) L-dopa. It took me a while trying amounts and intervals and mixing it with quartered C/L pills to find what felt best. I found that two capsules every three hours works for me. After three hours and 20 minutes I start to get body shakes and stiffness. So I think three hours is the dose interval for me. I ran out two days ago and had to go back to C/L. I noticed the effects were nowhere near as smooth as the dopabean. Since each bottle is nearly $25 it would cost me $100 a month. I’m going to buy a couple more bottles and if the next two weeks give me as much relief as the last couple days of dopabean 2 capsules every three hours at 8,11,2,5, and 8 did. It’s the best I’ve felt for as long as I can remember. If I keep feeling better then I would like to find a cheaper source for long term.
  7. 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.
  8. 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?
  9. Sherrie

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

    Wow! So has anyone tried talking to God until they felt safe and noticed their symptoms improve?
  10. 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.
  11. 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.
  12. Sherrie

    Freezing when using computer mouse.

    Have tried squeezing therapy putty in left hand while using mouse. It’s helped for a short while.
  13. 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!
  14. Is there any news about when we can get this test?
  15. 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.
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