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By oshroshr On 2011.01.24 15:49
My parkinson hubby is having more and more difficulty walking and I already posted how he is leaning to the left when seated. This is getting a lot worse in the last couple of weeks and I feel very sad for him.
While his walking was affected, this whole issue is much more intense.
Does this signal that he is changing stages or that he is getting much worse? Or does it sometimes reverse and become less intense.
He cannot stand or sit for any length of time without his legs getting stiff. Not sure what to do about this and his neuro appt is not till March.
He has been on Mirapex for about a year, 8 months full dose and he has been on gabapentin since he had shingles in the fall. Accidentally ended up on gaba pentin for his parkinsons cause it helped so much with parkinson symptoms when he was originally taking for shingles.
Appreciate any insight as would rather be prepared than have head in the sand.Thanks

By LOHENGR1N On 2011.01.24 23:38
oshroshr, You're trying to be prepared and not have your "head stuck in the sand" is going to have you running in circles. There are many medications and advances in medications that have come since some of the "stage" scales have been in effect. That said We patients can slip and slide back and forth and in between those stages much more than in prior years. Meaning we can experience a problem with gait or swallowing that would in the past been a sign of progressing to another stage but now new medication is introduced and it helps with the problem for awhile. Each case is unique to each person and the "stages" were meant for a guideline, or outline, not a set in stone point to point step of progression thing. This is a scary disease and changes when we lease expect it to it seems. Call His Neurologist and relay what's going on they might see Him sooner. Be vigilant as you are being, He needs your watchful eye. You're to be commended for that and for seeking answers.

Answers are much better than misconceptions or misinterpreting ....your head in the sand reference.....when the Ostrich lays it's head to the ground it's listening for signs (sounds) of danger. It's not trying to hide thinking one can't see the rest of it's body. So keep an ear and eye open but please don't get too caught up in these stages. You'll find yourself wasting energy worrying about them and needing your energy for other matters. I know this can be hard for some but please take the advice of a long time veteran in this struggle with Parkinson's and the advice from others here doing battle along side of you. Take care, best of luck and hang in there.

By Emma On 2011.01.25 06:46
oshroshr, I know that it's scary when new symptoms appear, but the fact is that over the course of the disease they will. Some changes will be permanent, some will wax and wane. It's hard to know. Sometimes they can be helped by changes in medication, sometimes not. That's why it's good that you are paying attention and can report changes to the neuro.

My husband also has extreme stiffness in his legs after sitting (or lying down) and can only walk a short distance. Sometimes after he's been sitting for a short time (before the stiffness gets bad) he gets up and does a couple of laps around the living room with his walker. That seems to help loosen him up.

Unfortunately, Parkinson's is a progressive disease. Things do change, they worsen, new symptoms appear. It's important to notice those changes and discuss them with the neuro. It's also important to expect them and just be prepared to be constantly adapting to make things as easy as possible for both of you.

By karolinakitty On 2011.01.25 07:09
oshroshr...I'm with LO on the stages..just a guideline, a year ago he was stage 3-4 with the way they describe things now it's about 2-3....he's improved due to some peoactive things as well as drugs...

Difficulty walking is it balance????? if it is, when my guy was on the gabapentin one of his issues was that his "drunken" walk got worse and he had troubles walking because his balance was off while he was on that...I weaned him back off and his walk is better now...currently we are on cymbalta,....crossing my fingers that this will last longer for the pain..........

By forMomwithLove On 2011.01.27 19:18
When I asked my mom's neuro about the stages, he said the same thing everyone is saying here - they don't mean much. He says he only uses the stages for the for newly diagnosed patients in the 1st/2nd stage just as a guideline for them, but as the PD progresses, he no longer refers to the stages.
I definitely don't have any answers, just my own experiences with PD and my mom:
My mom does the lean also. But her lean is to the right most of the time; it looks like she is just completely relaxed (we do use a pillow to prop her up because even though she looks completely relaxed, it still seems like it would be uncomfortable to sit like that for any length of time). Three years ago, she had a surgery and after the surgery, the lean was gone!! No medical explanation from the drs! But, then six months or so after the surgery, she fell and the lean came back - who knows?!? Recently, she has leaned to the left a couple of times - but when this happens, it looks like she is completely stiff and when we try to move her/staighten her, she is truly stiff and she stays like that until we get her to bed and can lay her flat.

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