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  • Posts

    • 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. 
    • 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.
    • 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.
    • 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.
    • https://parkinsonsnewstoday.com/2017/08/17/app-helps-parkinsons-patients-manage-disease/
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