To have or to have not: I have had PD... - Cure Parkinson's

Cure Parkinson's

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To have or to have not

Sadiesadie profile image
9 Replies

I have had PD (diagnosised) since 2002. In 2004, I was so bad that I taught my self how to write lefthanded, I walked with a cane and my right side had constant tremors. In the summer of 2004, I started having complications from one of the many medications I was taking. So it was determined that I would be a good candidate for DBS. I was scheduled for September. With much trepidation I was admitted to the hospital and prepped for the surgery. Everything went well and in two week I was scheduled to be turned on. Let me tell you, the moment I was turned on ie my DBS was activated, I notice an immediate change in me. I could write again with ease, I could walk without schuffling my feet, I felt great. I said this disease named Parkinsn's had not won!!! I had. Would I have it done again? YES, YES, YES!! (as a matter of fact I did have to have the left side put back in but that is a whole different story)

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Sadiesadie profile image
Sadiesadie
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9 Replies
hilarypeta profile image
hilarypeta

What is dbs and at what stage did you have it done? Im pleased you are better now.

Sadiesadie profile image
Sadiesadie in reply to hilarypeta

DBS is Deep Brain Stimulation. I had it done 2 years after my PD dx. But it was determined that I had probably had the disease for 15 years before my dx. It took six years to get the diagnosis.

hilarypeta profile image
hilarypeta in reply to Sadiesadie

Has it improved all your symptoms or just some of them?

Sadiesadie profile image
Sadiesadie in reply to hilarypeta

For a while all of them but I find that the older I am getting the more frequently I have to go get a tune up (that is what I call a bump up in my settings). But it was worth it.

hilarypeta profile image
hilarypeta in reply to Sadiesadie

Can you keep going back for a top up? I havent started any meds..will it mean i can use my hand again? Havent used it because of stuck fingers /pd symptoms for 3 years now..Only diagnosed today in england. Neuro will let me use mucuna pruriens to start with as i prefer more natural meds...

Sadiesadie profile image
Sadiesadie in reply to hilarypeta

Yes you can get tuned up every 3 to 6 mos as needed or less often. I could not use my right hand at all due to "stuck fingers & tremors but I can now.What is mucuna pruriens?

hilarypeta profile image
hilarypeta in reply to Sadiesadie

its an indian herb they have used for pd in India for years I think! Supposed to have no side effects and possibly slow processs down;;who knows! ill let you know. Neuro says he will send me info/prescription.;otherwise I am trying detoxing with applied kinesiology at present. He seems to tink he can cure me but may just be taking my money! he says i have too much acetopholine? from pollution and it is electrifying my system. Thinks once Im detoxed body wll work properly;;says im allergic to wheat and supplements Im taking. Hes given me zinc suplhate to take to get rid of mercury etc;;then I have to get rid of my tooh with infected root filling and crowns with mercury readings.;

Life is a medical merry go round at present.;;keep smiling!

Sadiesadie profile image
Sadiesadie in reply to hilarypeta

That is all we can do is keep smiling!

PS there is no cure for PD!! Only treatments, good luck with yours

Thumbpick profile image
Thumbpick

Amen to that... for me DBS in 9/10, but my writing was definitely affected. Learning lefty would not have helped b/c my left side tremors were nearly as bad as the right.

I am just now getting to the point where my writing is getting somewhat readable.

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