Person with parkinsons disease: I was... - Cure Parkinson's

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Person with parkinsons disease

Bernieneedfixing profile image
3 Replies

I was diagnosed in 2002

When l went to my local dr. With some symptoms of mind games, dragging one leg, writing getting scribbymas l continued writing, hard to sign my name, but no tremors yet, my dr. Sent me to a neurologist who when l told him of the symptoms, stated l had early signs of Parkinson’s disease, l must of had a shock look Om my face as he stated he would send me for a MRI, so off for this procedure had it in the morning and then went to see the results in the a/noon,

He produced the MRI and in his words said Oh shit, as a brain tumour was found, he said we have to fix that first, we can treat the Parkinson’s with medication later. I needed heaps of radiation to try and kill/shrink the tumour this never worked since so an operation was necessary, then l was treated by the hospitals Parkinson’s neurologist department, where l was treated by different neurologists, each time l went there, l did tests after tests, and was not improvingabout a year after all these tests l was starting to think l did not have Parkinson’s, l eventually saitomy neurologist this and he replied this is far as l can go l can send you to the experts, who were situated in the same hospital working under “movement disorder clinic” and they were sensational as l was having tremors and involuntary movements plus vivid dreams and hallucinations, working together we decided to have the dbs operation, which was a huge success with the complete stopping of the tremors and involuntary movements.

Bot the next obstacle was having falls.

From Bernie from Morwell Australia.

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Bernieneedfixing
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Gaz1403 profile image
Gaz1403

Hi Bernie.

I, too, was d’x’d in 2002 and after steady decline had DBS in 2015. This has been an outstanding success in many ways but I also have a real problem with falls. I do several activities every week: Boxing for Parky’s; walking football; power p.d. (similar to Pd warrior); Nordic Pole Walking; popping for Parky’s and (occasionally) table tennis.

When I first started playing WF in late 2015, I only fell over on the odd occasion, but this gradually increased until I was forced to go in goal - firstly some of the time but that soon became all of the time.

My neurologist has tried a few different meds - I was on Stalevo before and after my DBS but she weaned me off that and I am now on Co-careldopa (or Sinamet) with, of course, the compulsory Rasagaline.

Nothing seems to work and I am now feeling nervous of going out as I can fall over at any time - although I don’t hurt myself (apart from grazed knees) as I manage to “soft fall”.

Luckily, I am still able to drive but these falls are beginning to rule my life.

My Neuro seems to be surprised by the fact that I have so many falls but I have heard of a few pwp’s that suffer with them. Do you have any strategies to alleviate them?

Kind regards

Gary

Zardoz profile image
Zardoz

Are the two of you (Bernie & Gaz) suggesting that falls are a possible side effect of DBS?

Is DBS for tremor dominant PD or does it help with rigidity and freezing?

chartist profile image
chartist in reply toZardoz

This is an old article, but apparently falls and DBS are a real thing :

parkinsonalliance.org/new/f...

Art

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