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Gardener

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Gardener last won the day on October 23 2016

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About Gardener

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    Ohio

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  1. Noah, I'm having the same sleep issues so I was really interested to read your post. I go to bed 8:30-9:00pm. Last dose of Sinemet is a 50/200CR at bedtime. Lay awake for hours, sleep comes 3am or so. So, your expert said to postpone bedtime until later. I'm really tired by 8:30 but being tired and falling asleep are two very different things. I'm going to try the suggestion and will post my results. I've tried the glass of wine idea and it does not bring about sleep for me (not giving up though). I'm hoping that my MDS will prescribe a sleep medication at my next appointment. Sweet dreams, Gardener
  2. Hi SoCalGal, I haven't had DBS, but I have done a lot of experimentation with c/l. For what it's worth, I find that if my brain is used to a particular schedule of c/l then symptoms will break through prior to or close to the next dose. Anxiety or a feeling that I need to take pills is part of that experience. I've gone completely off medication and have found that overall my functioning is impaired but I no longer have the "roller coaster" feelings that I experience when I stick to a strict 3 hour dose schedule. As Roger said, you might want to push through that anxiety and see if you can go longer until the next dose. Best to you, Gardener
  3. Hello Dr. Okun, Of course, there is no way to know for certain if pesticide exposure was the cause of my PD dx, but if it was and pesticide use/exposure was stopped would that slow or stop the progression of the disease? Would continued exposure have any effect on progression? Thank you for the time you take to answer all of our questions. Gardener
  4. I have this also. It doesn't hurt or bother me but it is a curiosity!
  5. Thanks, Benyamin, for putting together this promising information for us. Gardener
  6. Hi John, I had myoclonic jerks of the jaw before dx (I didn't know what they were at the time and referred to them as jaw tremor). The Sinemet took care of them. Recently, I've been experimenting with reducing my medication and have noticed a return of the jaw jerks. They happen most frequently when I am eating or talking. I have come close to cracking my front tooth. I would like to know more about the prevalence of these movements in PD but can find very little information when searching the internet. Do you experience them in your mouth? Take care, Gardener
  7. Hello Dr. Okun, A few months ago I developed a fullness/clicking/echo/ringing in my right ear and doc treated it with prednisone (she said my tube was not draining properly). The prednisone worked quickly and for a couple of months everything was okay but I am now plugged again in the same ear. I don't want to keep taking prednisone for this problem. Could this be PD related? Thank you. Gardener
  8. Hi DayneE, I can understand how restaurant work could be difficult at any stage of PD and especially for a server. SSDI will look at your previous work to see if it might be possible for you to perform a less physical job. Have you thought about trying office or some other type of work? When I was finally dx, I had already been off work for a few years as a full-time caregiver for a family member. My SSD benefit window to apply was to expire in three months so I had to apply. It took a full three years to get approved. My age (58 at the time) helped my case. My attorney said that the Judge would take that into consideration. All in all, it was a very frustrating and sometimes humiliating experience. In retrospect, I think I would have been happier spending those early years engaged in something more productive and enjoyable. When your life is full and balanced, you have less time to dwell on the disease. Best wishes, Gardener
  9. Hi Bill, You will know if the Sinemet is working if you start moving more freely. Your pace may pickup, your arms might swing more, and overall you feel less stiff. I especially notice a difference when walking down my basement steps. You are still on a very low dose so you may not notice a difference until you titrate up. By the way, you have a wonderful attitude about life. Take care, Gardener
  10. NN, Could you elaborate on the tests performed to dx MSA. I surely hope that your gut feeling is wrong. Thanks for sharing. Gardener
  11. Bill, That's great! Hope you are feeling better soon. Gardener
  12. Hi Bill, I'm not sure I follow your question. There isn't a difference of opinion on using Sinemet and doing physical therapy. As Daven said, it's not an either/or. Exercise and physical therapy is good at any age. Sinemet therapy is sometimes reserved for later years with PD, especially with young onset PD. Young onset is defined as 40 years and under however some doctors treat ages 40-50 as young onset. 66 would not be considered young onset. Since you have Dementia with Lewy Bodies your medication treatment would likely differ from those with idiopathic PD and it would be important to follow your doctor's advice. Wish you well, Gardener
  13. Most people can't tell I have PD. For those who know of my dx, I prefer not to talk about it. When asked how I'm doing, my response is usually "fine." I have been asked what it feels like but am unable to describe it. The wide array of symptoms start to sound like I'm a hypochondriac so I would rather not answer. Gardener
  14. I would do both if you can manage it. The sinemet won't do much for your balance issues. Physical therapy and exercise should help a lot. If the medication works for you, you'll find that it eases the stiffness enough to enable exercise. Gardener
  15. The headline for this study is misleading: "Most patients with Parkinson's showed NfL levels in the normal range" so this blood test doesn't appear to diagnosis Parkinson's Disease but rather it helps doctors determine if PD is idiopathic or atypical. Am I understanding this correctly? Gardener