Barry Block
Forum Replies Created
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Not a hoax, but not a double-blind, placebo-controlled study either. They have patients inhale fibroblastic growth factor (FGF-1). They show evidence of effectiveness in animals and about 90 patients, with no side-effects. They show results on their website. I hope they eventually raise the funds to hold the clinical trials necessary to pass FDA muster as an approved treatment of PD.
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I’ve been taking .5 Mg of Clonazepam each night. It works like a charm!
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I was diagnosed 5 years ago at age 69. I am the editor of a national magazine. Working is exercise for my mind. I also exercise my body 5 times a week. I believe that as long long as you can physically do your job, you should continue working. Thank God for spelling and grammar checkers!
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A 23&me DNA test provided a simple answer. I carry the LRKK 2Â (G2019S) variant. I recommend that every PD patient take this simple saliva test as there are many new drugs being developed which are targeted to specific gene mutations.
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I use the Men’s Liberty external catherther. It comes with a night bag attachment. When applied corrrectly, it does not leak. It attached securely to the head of the penis. It’s covered by Medicare. !1-800 776-9030. You do need a doctor’s note.
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Diapers are an expensive and poor choice unless he has anal leakage. I use a product called men’s liberty. It’s an external cathether which is coved 100% by Medicare,.
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I recently ordered Men’s Liberty, an external catherter. It’s covered under Medicare. I think it will be a better option than diapers. You can call 888-776-9030 for more info. I will report back once I’ve used this product.
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I have PD for 4+ years now.While I haven’t noticed any hair loss,in the last year or so, I have had soem peeling ofthe skin on my face. I’m not sure if it’saside-effect ofPD orpartof the aginnnng process ( I recently turned 74).
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I recommend that if the current medicine is working, don’t mess with it. I tried changing my Sinemet CR to Stalevo and wound up with diarrhea. It’s often better to increase dosage rather than to change. Also note that medicines such has Sinemet cannot be taken with meals, particularly with protein-based foods as they interfere with brain-barrier absorption..
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What dose of B11 is recommended to be taken with the B12?
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I have been taking sublingual B12 5,000 mcg for two weeks. So far there is little or no change in my tremors. Someone o this site said that sublingual was as effective as IM injections. What have others found?
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I too rely on Alexa, however what I’ve learned is that it’s more important to time my Sinemet so as not to interfere with my meals, particular ones with high protein. Taking my meds an hour prior to meals or two hours after has eliminated the off periods I once experienced. This is because the carbidopa does not have to compete with protein in crossing the brain/blood barrier.
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I take Sinemet at 7AM and Fage Greek yogurt with peanut butter at 9 AM to avoid or minimize any protein conflict.
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I use Mucina Pruriens (Nutracost) 800 Mg as a supplement to Sinemet CR. I also eat Fava beans as snack. These supplements are helpful without side-effects.
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I work out virtually 5 times a week. It is the most important and effective treatment for PD. I combine aerobics (Zumba), weight training (5 lbs), and yoga/stretching and include balance exercises. I also try to take a mile walk when the weather permits. I am 73 and my PD has only progressed slightly in 3 years.
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What is the cost for the shoes? Are they covered by Medicare?
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Funny, when I take mannitol, it causes diarrhea.
My regimen is hydration, oatmeal with date syrup for lunch, Magnesium 500 mg at night.
My backups include miralax, colase, Dulcolax chews, senna or suppositories (rarely used)
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I take 500 mg of magnesium at night. This is very effective in reducing constipation.
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Have you tried Men’s Liberty. It’s glued on and taped so it doesn’t leak. I found that if I sleep on my left side, it stays on despite me moving a lot. If you are unsure,, put a towel underneath for added protection or wearr a men’s depend.
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With the external cathether, you can wear it 24/7 and change it every day. There is no painn and no risk of infection. It attaches to the head of you penis and you urinate whenever you want. It’s simply to empty it when you find a restroom. It fits nicely inside your pants. At night, you can attach a bigger bag to empty in the morning. It’s nice to sleep through the night without getting up multiple times.
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Thanks for the info. Please explain what 1/2 means as I am not familiar with that terminology. Does it mean one half dose or one of two daily doses?
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I too have the LRRK2 G2019S variant. What brand and dose of dibenconzide do you take. Is it chewable or sublingual?
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I’ll have my doctor give me a b12 injection. If it works, I can buy injectable B12 online. Ironically, it’s sold to pet owners, but cyanocobalamin is the same stuff. I’m a retired Dr., so I can self-inject it as necessary.
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What dose of B11 is recommended. Where can it be purchased?