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  2. Thanks for letting us know. Swamper was a huge asset to our community of PD patients and caregivers. May you be blessed as you navigate your journey through grief and loss. Dianne
  3. Today
  4. Haku, you have written a very clear and concise posting of your symptoms, and it is clear you are concerned and worried. When you do see a doctor, I think the thoroughness of your specific symptoms might help them as they try to diagnose you. And I can understand your concern since there are so many things going on. You might want to see an Internist who has a good reputation as a diagnostician and who is connected to a research-based university medical center/hospital and who can give her opinion, make some recommendations, and follow you with at least annual checkups if not more frequent ones. She could guage any possible progression. I think this is the groundwork upon which you should start, just IMHO.


    All three of you sure seem lucky in that what you type is easy to read. Your cognitive side of PD looks untouched. I base my observation on comparing posts. There are days I reread my posts and wonder how to work on not leaving words out. No matter how hard I try brain lapse of topic must be lost. I use to love to ride bikes with my wife. My wife will be retiring in about a year and a half. I have wanted to get a recumbent bike. Thanks for posting about the Profhand product. Also all your positive examples of not giving up. Finding a way. Helps. Cleaned and reorganized the garage yesterday. Took all day many rest breaks. Now that it is organized. Probably will look for days to find the new place items ended up. Should be easy to find because We have three of everything. When We can't find what we are looking for. I buy a new one. LOL tom my wife says we should have a garage sale. Hardly used items. LOL
  6. So Curious


    Hi Mihai, I am a proponent of cycling for PD patients. Some, like myself, may be unsure of their ability to keep their balance on a bike or just dislike stationary bikes. I want to share my solution for cycling. https://www.alibaba.com/product-detail/Profhand_50003849733.html Profhand™, a profound cycle chair, is specially designed for individuals experiencing walking disabilities and paralysis on one side of the body which may result from stroke, spinal injuries, cerebral palsy, hip joint or lower back pain due to degenerative diseases, osteoarthritis – knee deformity, Parkinson’s disease, chronic obstructive pulmonary disease, obstructive atherosclerosis ... I have tried for an hour or more to load an image. No luck. If you could of this product, that would be awesome. Also, I will send a copy of this post to Dr. Okun for his opinion. Thanks, have a great night. So Curious
  7. Yesterday
  8. Miracle, Pharmacies make more money if they can order a medication directly from their own wholesaler, which is usually owned by their company. Most retail pharmacies usually have a secondary wholesaler, either McKesson or Cardinal, where they can order different brands of generic. The problem with this is that it will affect there bottom line and probably become an issue with their boss. I guess I had a better understanding of the fact that with certain diseases different medications work differently for different people. I always called it, "The difference factor." I hope this helps and please keep me posted.
  9. Soccertese, What we need to know is that Extended Release (ER) medications have 2 categories, Sustained Release (SR) and Controlled Release (CR), which Sinemet CR falls into the last category. A CR medication must maintain that the drug is released over a sustained time period at a constant rate. This means that even the generic medications must comply with that same release mechanism as the brand name medication. With that we need to keep in mind that there is a range that comes along with that. When the medication is researched outside of the body, in vitro, the environment is the same for the product tested. When a medication is tested in the body, in vivo, the environment is not the same because no two people have the same digestive system, intestinal absorption, or liver metabolism. this is where each medication may vary. I have never been a big believer in splitting any CR tablets, but I do see it has it's reasons. Especially with the Sinemet CR 50/200 because there is a Sinemet CR 25/100 which would probably return better results. I hope this helps and please keep me posted.
  10. Mark, If only that can be true. All the drug stores by me tell me they can only offer what their whole seller can provide. I am having a terrible time locating generic Mirapex that is not Glenmark. I can tell you something funny though. I had a prescription for Provigil once and it was generic. Turns out it was brand but they put out a line of generics and called it that. Charged less and was the same thing. Now that would be nice if that can happen with all drugs.
  11. Miracle, It is primarily used in MS patients for spasms, but it it used quite often off label for dystonia in PD patients. As I wrote in my previous post to you, It is related to GABA, which decreases the effects of chemicals in the brain that can cause spasms. A starting dose of 5mg is reasonable. As I always say, "Start low and go slow." There is plenty of room to move with this medication due to the fact that the maximum dose of the medication is 80mg per day. I hope this helps and please keep me posted.
  12. MComes RPH


    Caryl, External temperature should have no effect on how effective the medication works.This may have been confused with a very rare side effect of the medication whereas it can cause an increase in temperature in the patient, along with rigid muscles, and in and out of consciousness. It sounds like the dose may be a little low which may not fully control your symptoms. Rytary dosage can be increased every three days, but should only be done so with a Doctor's approval. I hope this helps and please keep me posted.
  13. Hi Michelle, As you know, when it comes to different generics, especially with Sinemet, many people will react differently to different medications. Now I did some research and contacted I believe all the manufactures of generic Sinemet and primary pharmacy chains and it looks like all of them are producing the generic and have the ability to obtain many different products by the various companies. With that said, I would recommend that your Doctor write a prescription with a specific company name on it, that way you will receive medication from that company. I would also have them write the prescription for just a month supply, that way then you give it ample time to see if it works. The companies, making the generic Sinemet are Accord, Actavis, Mayne, Mylan, Sun, and TEVA. For example, let's say you are taking the Carbidopa/Levodopa 25/100 three times a day. So that you get a different generic than what you already have tried, the Doctor should write it: Carbidopa/Levodopa 25/100 (TEVA) Take 1 tablet three times a day #90. After trying that specific company for a month you can then gauge if you should try a different company. The key is too improve quality of life and not to try and compketely get rid of the symptoms. This may not be achievable. I hope this helps and please keep me posted.
  14. Twitchy, There is no "official" interaction but there are a few issues you are dealing with. People with PD sometimes experience with orthostatic hypotension. This is a drop in blood pressure when they are trying to get up from a seated or laying down position. Secondly, products like Rytary and Sinemet that contain Carbidopa and Levodopa, have also been shown to lower blood pressure. It may only be a few points but it can make a difference when added to the fact that PD can also cause a decrease in blood pressure in some patients. Lastly, when adding a blood pressure medication into the mix, a patient can experience a drop in blood pressure that can cause issues like those you are experiencing. One solution that I usually recommend is that the patient switch to taking the blood pressure medication at bedtime. When a person is sleeping there is a less of a chance of experiencing theses side effects. If the patient is already taking it at bedtime and theses issues are happening in the morning, then I would suggest that they take the medication in the evening or around dinner time. This would then avoid the problem in the morning. I hope this helps and please keep me posted.
  15. noah

    Duopa Pump...

    that sounds like me i was taking 29 pills per day with alot of off time i wasnt absorbing the pills evenings are still a problem for me as well
  16. Thanks Gardener. I have Baclofen right now but will wait until the weekend to try it out on her. I've been giving her a 1/4 pill extra Mirapex to her night time dose and she seems less stiff in the morning but it's knocking her out. Last night she slept with her head tilted back from being so stiff which can't be comfortable. I don't think it takes much to make something work for her if it works because she's so tiny.
  17. pjdugan1

    Duopa Pump...

    Noah, My husband has had the pump a year and a half and it took over a year to get it tweaked pretty good. Still getting little tweaks here and there. But much better! Still can't get his evenings down but much better than the pills. When they converted pills to Duopa at first it was way too much. Apparently he was taking lots of pills but not much was getting thru. He used to have one or two good days a week. Now he has 5 or 6 except for late day. Hang in there! Trial and error. Also, he found the chest pack to work best for him in summer. Get oversized shirt and covers quite well. With button down you hardly notice it and he has hands free.
  18. I've used both Baclofen and Flexiril. Baclofen did not make me sleepy but had a very mild affect on my spasms. Flexiril worked much better on spasms but it does knock me out. I have a prescription for Flexiril that I take for spasms and occasionally when I can't sleep. Hope you find something that works for your Mom. Gardener
  19. I see Mark talks highly of it all the time on his postings so that's why it threw me to see that it's not for PD on the drugs.com page. Your wife got sleepy from Flexeril but not Barclofen right? I know you said your MIL didn't.
  20. I agree with waruna. Symptoms take some time to come out. And just in my experience when a symptoms is there over time it happens more often as time goes on. My last daughter is 24 and going to college. Look at the whole picture. It could be stress related. Now this is just an opinion. I have no idea where you are in your life. My daughter studies long hours, works a job, tries to have a social life. To add America 's job market is changing so much it is hard to choose the best area of that market for long term stability. All of what I have just mentioned can make anyone tense. I tell my daughter sleep is important for the brain to rest. If you are in college look at the load of credit hours you are taking. Could be cut back to say 12 credit hours. I think you can still get loans. IIf you are not in college just look at what you are asking of yourself. I may be wrong. I have just given you something to consider. Now if I am partly correct about stress. Try to adjust by lowering your stress level. If Symptoms continue and get worse see a doctor. Just a suggestion. tom
  21. relax. You seem paranoid. Is your smell still good? Can you smell cofee? Banana ? Then forget about Parkinson and reading about it on the internet. If you still have these symptoms after few years, then go see a doctor. There is no benefit of an early parkinson diagnosis. I am pretty confident your symptoms are not Parkinson’s related. Parkinson symptoms takes years to manifest one by one not all at once
  22. Hi! Thanks for your feedback LAD, how come he put you on antidepressants? Did you feel depressed? I'm feeling very well emotionally, in better spirits than before starting meds... so I really don't think that's the reason... Mihai, thanks for sharing your experience. I'm on early stage so I still don't have dyskinesias, but good to know they may be a cause. I'll keep an eye on my weight. So far I've lost 4kg since January, I'm now in my normal weight pregnancies aside, if I keep losing weight I'll def tell my MDS. thank you all
  23. Hi Otolorin! I just bought some CBD from https://formulaswiss.com/collections/buy-cbd-oil/products/5-1-cbd-oil-drops-in-olive-oil-3-20-300-2-000-mg and am pretty happy with the results I'm seeing so far. The prices seem to be pretty reasonable compared to others I've looked at. I am taking 5% (500 mg) but your dad can start at 3% (300 mg). I can see it is on sale at the moment Smiley LOL Hope this can help!!!
  24. It’s the most commonly prescribed muscle relaxant for Parkinson’s patients.
  25. Hi...I've had PD for almost 18 years. As my dyskinesias got worse, I was losing alot of weight. Having dyskinesias is much like exercising 24/7. I went from 160 down to 135 or so. I had DBS in November of 2018 and have gained much of that back. I look much better now with a little weight back. Keep an eye on it....you don't want to go too low. Mihai (Michael)
  26. kai

    Swamper Signs Out

    We are very sorry for your loss.
  27. spaxter

    Duopa Pump...

    Dear Noah, so sorry to read of your troubles, it sounded so promising, hopefully this is the just the dark before dawn. It wouldn't surprise me if you bumped your knee and didn't think twice about it, so often doorways and such rear up and hit me! i have been reading your story for months now as a lurker and find myself caring very much. I am sure i am not alone in this, and many of us are wishing you well. Hang in there and keep us updated, you and Drummergirl are pioneers, so brave and strong!
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