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Sherrie

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About Sherrie

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  1. Sherrie

    Numb limbs

    What are some reasons for my forearm to go completely numb when sleeping? It’s the side I’m NOT laying on. My foot will go numb too. It’s as if blood supply was cut off. I shake it for a while and the circulation brings it back to normal. I notice this more frequently now when I wake up slightly to turn over.
  2. Sherrie

    MSA-P and levodopa

    Since people with the MSA respond to levodopa for a much shorter time, do they get dyskinesia sooner too?
  3. I got dyskinesia on the second week of C/L. I take the generic C/L 25/100. My dyskinesia is a bobbing back-and-forth like I’m bowing.The way I manage it is to take a quarter tablet every one and a half to two hours. If my stomach is empty I take it and wait 15 minutes before eating. If I’ve eaten I wait 45 minutes after before taking it. If I simply cannot time the eating properly then I will eat something with as little protein as possible. I also take three dopabean capsules with enteric coating instead of the quarter tablet a couple times a day. I like the way it works like l-dopa but smoother, less dyskinesia. Very expensive though. I get dyskinesia at the beginning of a dose if I’m taking too much. But I also get it when I’m coming off of a dose. It kind of lets me know I am waiting too long and need to take the pill sooner. Since breaking the tablets into quarters isn’t a perfect science I break a number of pills at once and look them over as I take them throughout the day to pick the slightly bigger or slightly smaller one depending on how I’m feeling and what I need to do over the next couple hours. Many members of my immediate biological family are extremely sensitive to medications. I just assumed that’s why I started the dyskinesia so quickly. I barely have a tremor unless I’m under stress. But I am very stiff and slow without the meds. I didn’t start taking C/L until four years after my first motor symptoms.
  4. Sherrie

    Elena Sanchez

    Tremor all over body happened to me too. I felt like I was shivering for three months. Only lying perfectly still made it stop. I think I spent most of three months in bed. While you’re waiting for a diagnosis you might want to get a bottle of dopabean (natural source l-dopa)at a health food or a vitamin store. The enteric coating on the Solaray brand helps. For me, two capsules every hour and a half made my body tremor stop. Not everyone gets useful information from the scan. Parkinson’s can take years to diagnose and progresses very slowly. There’s really no hurry to get diagnosed except the desire to know and how helpful a prescription of l-dopa is at relieving stiffness. You know something is very wrong and you want to know for sure what it is and have people understand and believe you. That’s how I felt.You can get the understanding here on the forum. We believe you! There’s so many weird, seemingly unrelated symptoms going on it’s hard to believe it’s all from one disease. I thought Brain Storms was a good book understanding Parkinson’s.
  5. 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.
  6. 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.
  7. Sherrie

    Internal Tremors

    The dopabean with enteric coating I’m taking help get rid of the jittery shivers for me.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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?
  13. Sherrie

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

    Wow! So has anyone tried talking to God until they felt safe and noticed their symptoms improve?
  14. 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.
  15. 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.
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