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4-Year DBS Follow-up


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#341 siak

siak

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Posted 01 July 2015 - 10:01 AM

NN--I tried to start this last night and fell asleep in the middle of typing. When I woke up the computer said "You do not have permission to do the requested action". I have no idea what I did when I fell asleep on the keyboard so I hope it wasn't something weird! I used to fall asleep in the middle of typing and I would wake up to pages and pages of the same letter.  :oops:  Anyway, I wanted to let you know that I am glad you posted on this thread because I would not have seen it otherwise. And I feel it is appropriate for the depression theme because what causes me the biggest anxiety in my life with PD and DBS is not being able to move and do the projects, big and small, that I want and need to do. It was so amazing that you put the post on yesterday because the past few days I have not been able to walk, get around my house, go outside, bend over to reach under the bed, etc. So, I had always heard the word "Dystonia" in relation to PD but I didn't know (and still don't) what it was. Before I saw your post yesterday, I finally thought that maybe my problems were dystonia, so I looked it up to see the definition. The definition didn't really match what my experience was but when I saw your post, it made me wonder if the problems I am having with moving were dystonia. SO thank you for posting. I know it doesn't answer your questions, but I want to investigate the issue further with my doctors. I will share the info with you if I get any helpful answers. Kim--thanks for your post also, I will respond later. I have to try to be productive now. I wish I had more time / energy to type more. :)  :)  



#342 New normal

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Posted 01 July 2015 - 03:17 PM

Feet: Thanks, Kim...you are always so generous with your time...you are amazing....and Coach T.....and others....

What is odd....when I overstretched my right foot, it hurt for over a week....my left foot hurt equally....but, because I thought it might be dystonia...I left it alone...it was gone in one day...which makes me think it is PD related.....WHICH means I will continue to stretch....carefully...accept it, adapt...and move on...

Siak: I have dealt with PD long enough to know,that whatever sensation...or pain...or weird feeling...that a nerve can elicit in ANY part of the body can be PD related.....the flip side...is many of us ignore the myriad of "stuff" when it could be a sign of something else. So I have adopted the rule...it happens once...it is PD...twice, it is me.(environment)....three or more often, I start paying attention to it and try to discern if I should seek medical help.

An example: before I was dx'd....I was dx'd possible MS....I was getting into my car on passenger side.....I SWEAR I touched nothing...and in my elbow...near the "funny bone" I had a HUGE jolt of pain...like a sledge hammer hit it....I cried,out ...yelled would be a better word.......grabbed my arm....and stepped back out of the car.....and THEN my forehead mass tingled with shots of pain...pressure.....my poor DH....<<smile>...,,,I had just,screamed...but now was holding my head...saying, "my head is EXPLODING".....yep, everyone likes to do,that on a busy street corner! I tried everything to control it...and ...BAM ..it disappeared.....

OMGosh...another adventure...totally out of nowhere......I went to my PCP....he calmly explained that my body was playing tricks...and it simply was MS...to get used to the unexpected.....well, now it is PD....and the game has amped up......

I cannot imagine adding another variable..... DBS....it must be so difficult to identify anything....and to assess the origin....Siak...you have EVERY reason to feel depressed....and seek a cave somewhere....cave seeking is ok...as long as it is therapeutic....when u no longer want to come out of the cave is when you need intervention.....self control and self discipline is hard for any of us...and elusive.....

On "Dancing with the stars". A contestant danced with one leg and a prosthesis.......when she was at her lowest
filled with discouragement, was asked...."how do you continue?..... She answered, "I just dig deeper...." Wow.....I know how many times I didn't want to dig at all......but I do know, Siak, we each are given the resources...and we all have the potential to dig deeper......we just,have to find our own way....find,that element that will help us keep digging deeper for strength..

You have done it before...I know you have...and you can, again...dismiss those,who,give you negative feedback until you find a source,who,will validate you....believe in yourself....you have purpose...hang on to that...and keep posting...we all learn from each other...hang on....stay strong!
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily. Amantadine 100 mg 2x per day.
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy
Live, laugh, and be grateful. :) "ACCEPT, ADAPT, AND MOVE ON." :)




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