Still there fighting the dreaded disease but with true grit.

[Bernieneedfixing]

Hi l am bernie from Morwell Australia, diagnosed with pd for 15 years aged now 65, married with a loving careing. wife of 45 years. I have had the dbs operation two years ago, stopped all my tremors and involuntary movements

Major side effects now is my balance having lots of falls and my handwriting even to me is unrecognisable, l am always tired and need naps or sleep ins, l am positive with the disease l except it and it does not get me down much, l can not get myself to do much work l find l run out of juice quiet often, l exercise most days and are eating fairly properly

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search thiamin HCL on HU

[Greenday]

Possible treatment with Thiamine HCl by Dr Costantini.

[ddmagee1]

Top of the morning to you, mate! Balance is a big problem for me, too, along with tiredness and I need naps and sleep ins, too. I use a three prong cane, at times, when I feel a bit unsteady. I've had a number of falls, but with the cane, and being careful, this last year, I've only fallen once. If I don't get a nap in, I feel worse during the day. I don't have enough energy, and, my problems with peripheral neuropathy and numbness in my face are worse. So I usually get a short nap in, each day. I do exercise, but I don't eat as much as I used to. Some days my taste is way off, and nothing seems to taste good. I'd like to visit down-under some day. We'll see how things go in the next few years.

[Toogood]

Well done to you.....that’s all you can do really..keep on...

[st8farm]

"G-day" mate..... Always wanted to say that. Search through this site and narrow down things that will seem to fit your situation. It can be confusing but eventually the collective wisdom of the group seems to bubble certain protocols or treatments to the surface that seem to work for more than just the one off situations that inevitably exist. One of my best friends is my doctor (GP) but having said that, he is human as well. He cannot possibly stay abreast of everything happening in the field of medicine. In a nice way, demand that he or she have a conversation about your PD and how these new treatments or protocols may affect you. I also have a Parkinson's specialist and will soon change because she seems to offer treatment by brochure and never has time for proper discussion of my disease.

Keep up the good attitude. I have always said that "they will find the cure on the Monday following my passing". But since coming to terms with this devil I firmly believe that I will live long enough to beat him yet!

[alaynedellow]

Hi Bernie, I take Mannitol(a natural sweetner) and it has worked wonders for my mood (apathy) and energy levels. I get fromUSA from syncolein.com and I about to start Dr Constantini's regime with vitamin B1 - thiamin. You can research them here for other PWP input too.

Good luck once energy returns you can fight back better😃