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  2. I am concerned about seizures and sometimes it is helpful to go into a seizure monitoring unit or to get an ambulatory study. Some people will get a MRI to look for a stroke that may be the genesis of the seizure. Some people will even after EEG and workup treat with meds. Lewy Body disease can cause these sorts of episodes but these sound more severe than Lewy Body.
  3. Sinemet Use

    You may try a half of a tablet every 3 or 4 hours and that may help a lot (Sinemet 25/250). Also be careful as the artane may worsen cognition and some people will not use this drug. Mucuna pruriens can be added to the Sinemet as another option.
  4. This is possible and we have seen this in a few patients. Usually when it occurs a dystonia or something really uncomfortable emerges on the least affected side--and then patients switch and say that is the more affected side. I think the key is to listen to the patient and to treat the symptoms as with treatment you may be able to handle the symptoms and treat them effectively (botox for dystonia, levodopa, etc.).
  5. Today
  6. Good morning!!

    Good morning to all! In my life, some things are working out the way I would like. Others may never be as they were before. I find that acceptance of what is out of my control is the least stressful response for me with my PD. I find peace and joy in what I can do for myself and others. I appear to be having an attitude of gratitude today. I love it when that happens. Wishing you all a wonderful day! Dianne
  7. Good morning!!

    Hello Everyone. I trust that everyone has choked down their fistful of pills, recharged their dbs power packs and topped up the duopumps. Bard, its official, worst summer of wildfires in British Columbia. I hope that the fires soon get under control. LAD, that was a busy/proud weekend for your family. Hi Peace, Marcia, thanks for the well wishes . Linda, Dianne, PF, and everyone else. Have a safe and happy weekend. Its Friday, and whooo dont love a Friday. Be safe, strong and thoughtful of others jb
  8. Hi! Yes, I'd had to dismiss the inflatable bed as well! I am in the UK but I've found another link for the Raizer, which might be better for you? It's the website of the actual manufacturer of the product, I think (The previous link I sent was for a UK supplier.) and it looks like they have some US suppliers. I hope its cost doesn't end up being prohibitive - estimates for healthcare services and products in the US always sound eye-watering to me! https://www.raizer.com/ When I was looking into electrolyte supplements, I had heard that Gatorade and other 'supermarket' sports drinks don't offer 'serious' electrolyte replenishment - my brother sent me a load of products from one of those sports shops that gym bods go to for their muscle-building protein tubs, say (my brother does distance running). I make up a solution from a powder sachet by a UK brand called Science in Sport...I don't know what the US equivalent would be. All the best, humbly submitted. Moops
  9. Hello, Haven't posted here in awhile, I'm 30 and was diagnosed 5 years ago. last month I noticed I was starting to lean to my right side slightly when walking or sitting. It's progressively gotten worse and now all of my muscles from my neck down are much tighter than my left side and a bit painful. My left side has always been my bad side. My bradykinisia is still worse on my left hand. My right side is like stone. The Baclofen provides some relief. Any ideas why my dominant side is now much worse than my weak side? Thank you I'm currently on : Rytary 23.75- 16 tabs a day ( have been on this dose for about 6 months now. ) Amantadine 100 mg 3 x a day Baclofen 4 times a day 20 mg ( recently increased this from 3 times) Buproprion 1 tab a day Oregano capsule 100 mg 2x a day( it helps my fatigue, I don't know why, accidentally found out) Nac- twice a day.
  10. Best way to lift someone off the floor when you are alone

    Hi Moops! I would kiss you if I can reach you right now. This is genius!!! I always wanted something like this but couldn't find it. The closest thing I could think of was an inflatable bed that you can put under the person and have it pump that person to at least a sitting position but they could fall due to balance problems. I really need to look this up but are you in the UK where this video seems originate? I'll have to check out the cost and if it can ship to the U.S. where I am. Welcome to the forum and thank you so much for bringing this to my attention. I'm sure others here will find this a life saver too. Oh.. and this tip about electrolyte sounds sensible enough but I always give my mom Gatorade and it doesn't really give her any energy. Darn! I would love more from you though. Don't be shy and every advice is welcomed.
  11. Hello Miracleseeker came across this post when I was trying to resolve a similar issue with my Dad. I since came across this device, don't know if it maybe useful for you? https://www.yorkshirecareequipment.com/p/moving-handling/raizer-emergency-lifting-chair/ I haven't gone for it myself so couldn't tell you anything about its costs - I thought it looked like an amazing invention but I'd already gone for the conventional wheelchair, which I try to keep handy in case it looks like my Dad's about 'to fold' from his standing position. There is a certain predictability to when my Dad loses strength in his legs, I think so anyway (It tends to be after I've taken him out so I get the wheelchair ready for when I'm escorting him back into the house.) so I get a bit of warning beforehand to try and prevent a fall. I find my Dad's got minimal energy levels so even sitting in a car for a while can be like exertion for him - I bring electrolyte & carbohydrate solutions with me to give him now (Like the powder mixes that athletes and people training for marathons take!)...probably 500ml a day in hot weather, say, as part of his normal hydration and I've found that makes a big difference in reducing the occurrence of loss of leg strength. I realise I'm late with this reply compared to when you started the conversation but I didn't not want to send any information that I found could be helpful. Hope the situation has improved for you, apologies if I'm going over ground you already know...or if I've added 1 + 1 together to come up with 5! I did a speed read of this thread and it's 3am over here so my concentration is somewhat compromised as I'm writing this; I may have just made some suggestions that were not appropriate to your case! Good luck with everything.
  12. Possible Sinemet side effect?

    Lolita, It sounds more like a side effect of Sinemet than an infection. A sore throat is an uncommon, not serious, side effect of Sinemet. You may also have a dry, hacky cough to go along with it. In some cases it may appear to be an upper respiratory infection, but a simple throat or sputum culture by the Dr could have been done to determine if it is an upper respiratory infection. I would give your neurologist a call and let them know your circumstance and let home decide what to do. A possible lowering of the dose may help, or he may decide to change medications all together. I hope this helps and please keep me posted.
  13. Much of your story sounds familiar. I was also diagnosed at 38 with 4 kids and wife that's a SAHM. Also noticed a fair bit of progression early on. The similarities though stop about there. As you will hear often around here everybody experiences PD somewhat differently. Had you come here before informing your employer most would have advised against that move. What's done is past, but depending on who you work for that could turn out to be a neutral move, or a poor choice. Rarely is it a positive outcome when first diagnosed. Eventually you are forced into disclosing, but putting that off can have advantages. After 2 years I have still not told my workplace, and don't intend to change that for many more years if I can help it. Anyway, regarding meds, I started on Sinemet right away. I felt like I had 5 years previously. Tremors went away, anxiety (which was really only a few discrete events) went mostly away, and that feeling like I just wasn't quite all right (which had been there for several years before tremors started) went away. Only side effects I've had were some easily mitigated nausea when I'd take the meds (eating a cookie was plenty) and after a year or so an increase in daytime sleepiness. Both of those issues went away when I switched to Rytary which is an extended release version of Sinemet. So, I have zero regrets with starting the meds right away. But that is an intensely personal decision that nobody else can make for you. There are others on this board that do regret starting meds right away, or who delayed meds for years and are thrilled with that decision, and there are others that regret delaying meds.
  14. Yesterday
  15. https://parkinsonsnewstoday.com/2017/08/17/app-helps-parkinsons-patients-manage-disease/
  16. Are we doing everything right?

    Thanks, we will definitely try out with the compression stockings, my grandmother started drinking more water and we see that it works well.
  17. Music and Parkinson's Disease

    Music & dancing are great!!! https://www.facebook.com/hopkinscmm/ https://www.google.com/amp/www.baltimoresun.com/health/bs-hs-music-and-medicine-20170518-story,amp.html LAD
  18. First take a breath.... Get a good MDS doctor Everyone is different-there are different options. That's why a good movement disorder specialist (MDS) is important. Start exercising if you don't already...there's lots of choices for PD specific programs. Exercise is one of your best tools to fight PD! I do a program called PWR (www.pwr4life.org) & my husband and I take dance lessons. Find something you enjoy doing. Take one day at a time...you will find what works for you. Welcome to the forum! LAD
  19. George, Whether you take or delay meds is sometimes a hot topic depending on your opinion. One thing I have personally noted from my own experience is if you're focusing on the disease, your symptoms are gonna be magnified quite a bit. First, you need to find things that will distract you from having PD. It's not going anywhere, so fretting about it is wasted energy. Excercise everyday!!!! If you still feel that your quality of life needs something extra, then by all means discuss with your doctor on what they think would be best for you. You could try starting with Azilect to see if it might help (pretty rare if it does, but still worth the attempt). Be careful with the agonists as they can cause some serious unwanted issues. Not everyone experIences these problems, so if you go that route have your family keeps tabs on you. If all else fails, you can go for the gold standard of Carbidopa/Levadopa in the form of Sinemet or the new formulary which is Rytary. If you decide to go the meds route, it might take some time to find the right combination/dose that will improve your quality of life. I take Azilect and Rytary. It took nearly two years to find the dose and timing that provides the best relief for me. Patience is the key when it comes to Parkinson's. It progresses slow, so time is on your side. Regards. Dave
  20. Music and Parkinson's Disease

    I'm not a musician but give jazz to listen to and I'm in heaven.
  21. Music and Parkinson's Disease

    Hi, Seward -- I must first confess ignorance of playing drum and guitar. Therefore, I cannot offer suggestions on technique. When I am at the piano and experience lack of coordination, when my fingers don't do what my brain is telling them to do, I know my medication is not in full effect. Sometimes I just have to take a break and try later. I know that is not very helpful, but the only other action I take is to try rigidly timed finger exercises and see if I can increase muscular control. Usually that has a positive result, though I never expect perfection. J
  22. George my husband found out he had Parkinson's at age 45, that was 25 years ago. He started taking Sinemet right away and for him it made a great improvement in his life. He knew something was wrong for a couple of years before but because he did not have a tremor he was not diagnosed right away. He still takes a combination of regular Sinemet and Sinemet ER. Lots of complications now but that is to be expected after all these years. Good luck and God bless
  23. Last week
  24. Hi George, I'm 49, three kids, and diagnosed in April. I've avoided meds too but am thinking about starting them - the rigidity in my neck is so annoying. I first noticed symptoms years ago - slight tremor, arm not swinging as much but symptoms intensified in the last year. Finally consulted Neurologist in April and was delivered the news. Anyway I'm not much help but know that you are not alone.
  25. Music and Parkinson's Disease

    I'm having trouble with instruments. I can play drums for a minute or two, then I miss a stroke. Similarly, I can't do downstrokes on the electric guitar. Any suggestions? hans
  26. I'm 65 yr-old, recently diagnosed PD. Started Carbi/Levo 25-100mg, titrated for first 15 days, have been on full dose of 1tab TID since 7/22/'17. Stating on Sat. 8/12 I've had a sore throat that has gotten worse. On Monday I saw my general doctor, he thought it was acute paryngitis and Rx.Amox-Clav 875mg tab BID for 10 days. I have completed two full days and sore throat has not improved much. Looking at drug information sheet provided by pharmacy for Carbi/Levo, it lists sore throat as possible side efffect that "I need to call my doctor right away." I have placed call to neurologist and am waiting for a call back; don't know if I will hear from his office today. Have you hear of sore throat as possible serioud side effect? If so, what is the risk? Thanks.
  27. Yesterday had second opinion with same verdict -Parkinson. I am 38 years old father of 4 kids and none working wife. Last 2 months spent with anxiety regarding finances and overall depression. But kids are charging my batteries and keep me going. Gone from occasional right hand tremors when stressed and right shoulder stifness (few months ago) to daily tremors during morning and day, dystonia in right leg and arm. Not taking any meds yet and wonder what was your timelines when you said that it no more manageable and time to start pills. Originally i was thinking delaying meds as long as i can to perform my office work duties.I informed my boss and HR so i can concentrate on work and not overthink hiding symptoms. What is your Parkinson progression timeline noticing- > diagnosis - > meds? Do you regret delaying taking meds or starting them earlier?
  28. nativ

    Noah, There are very few people that do this basically because it is mainly done for people in a state of what is called "brittle" Parkinson's disease. This means that there off times have become so bad that they have to have constant input of Sinemet. Like I said, I do travel quit a bit and I do use this method to help keep my levels in control. There is now a product called Duopa which is and intestinal infusion of levodopa keeping constant levels of Dopamine for approximately 16 hours per day. If anybody if using the liquid Sinemet drink, please feel free to post it here for Noah. I hope this helps and please keep me posted.
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