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Topic Mobility, drooling and other issues Go to previous topic Go to next topic Go to higher level

By Emma On 2009.10.08 07:07
For the past three years or so my husbands condition has remained relatively stable. Then about two months ago he began to deteriorate. His balance, which had never been much of a problem, got bad very quickly and he has had numerous falls and near falls. He can barely walk twenty feet even with his walker. He is very unsteady and looks like he's drunk, swaying around, stepping backwards, etc.
He doesn't want to use his cane or his walker and insists that he's not going to fall. The last time he said that to me he fell into the wall as the words were coming out of his mouth. It's very frustrating.

His memory and level of confusion are worse too, as is his ability to speak. He stammers a lot more and has more trouble coming up with words.

He has started to have bouts of incontinence, both bladder and bowel. Now I've noticed that he is drooling a lot, and I mean A Lot, but it's always when he's sleeping, never when he's awake. I'm wondering if this could be a precursor to swallowing problems? He says he's not having trouble swallowing but he's eating less. Nothing seems to taste good to him anymore (which I've noticed that other people mention in their posts) and he can't identify food, for example he thinks fish is chicken. He also thinks everything tastes sweet.

His doctor has adjusted his medication in hopes of improving the mobility and balance issues but it's not helping. We go back to see him in a couple of weeks. The thing that worries me most is that he's starting to make comments about not being around much longer. The other day I told him that I was going to get him some courderoy pants for winter and he said "hold off on that, I might not be around this winter". What's going on????

By susger8 On 2009.10.08 07:50
The symptoms you describe are typical of later stages of PD, unfortunately. It's the progression of the disease. Adjusting medication might help a bit, but it's going to progress anyway.

My father reached that stage about 3 years ago and he's still around. The course is different for everyone, but chances are your husband will need those warm winter pants!

By Emma On 2009.10.08 17:52
Thanks Susger8. I know that he's in an advanced stage of the disease but I don't want to think about or admit it. He's had most of these symptoms for a while but they suddenly seem to be getting so much worse and it scares me. I've always told myself that since he didn't have swallowing problems it really wasn't that bad yet. Now when I see the drooling starting and listen to him talk about not being around anymore it puts me in a panic. I'm just having a bad day I guess. I'll order the pants :)

By LOHENGR1N On 2009.10.08 20:04
Emma, By all means get the pants. Unfortunately as the disease progresses problems multiply. And it's only natural to have days when we wonder just how much time we do have left. Also as is said over and over here this Disease presents a different package and progression rate it seems to everyone.

That said, I have among many pet peeves the stages thing. Along with tremors one of the first symptoms to manifest in my case was drooling. Midway between the diagnosis and now I developed swallowing problems. As stated above different packages with different patients. Because drooling or swallowing or falling issues developed toward end stage in one doesn't mean that when they develop in another it points to being end stage.

Being a Patient I guess I view things differently. I know caregivers/partners try to brace themselves or be prepared in their role by somehow finding the "stage" maybe to get a grasp as to what's going on. I don't know. Sitting here typing and thinking ...... I think You caregivers/partners have it worse than Us P.Der's. Don't get Me wrong, I hate this disease and fight it with every fiber in my body. Like MJF says, we pick up along the way tricks to hide it. We move our hands more as the movement interrupts the tremor, change body positions etc. these become the norm to us, almost automatic. We who are able pick our spots, if we can, we go out while getting maximum benefit from med's. People who see Us say things like boy you're looking good! (They see us for a few minutes every once in awhile.) We can't hide from You. You see our problems, our deterioration. You see our struggling to do things once easy for Us now difficult. Our frustration over this, our resentment of the disease robbing our ability. Oh you may avert your gaze when We sneak a peek at you staring, but We know and We know You know. Perhaps this is a reason why at times We can seem mean of hurtful? We can fight the disease, you can't fight it. You can only help US in the sense of making things easier for Us around the home. We see it as unfair, this disease, not in a self pity way but as an unfair burden upon you. We're mad at this so what do we do? Snap at those who are trying their best, joined in the loosing battle with Us. For that I apologize to You for myself and for others Who haven't yet thought of it this way or just lack the words. I will say thank You for those who haven't yet and also for those who have gone on and maybe waited too long to say it not getting the chance again to say thank you, for sticking with Us, for the unconditional love, for being You.

Well now I've gotten a bit long winded in this post, I started out about to climb upon my soap box again! But somewhere along the way got sidetracked. I hope in some little way this has helped patients and caregivers/partners understand a bit of what may fuel our interactions with each other. I don't know, just started typing and this came out. Be nice to each other we're all in this together. Take care, best of luck and hang in there.

By annwood On 2009.10.08 22:07
Thank you, Al. This made me cry a little.

By Emma On 2009.10.09 05:20
It made me cry too, but in a good way. Thank you.

By karolinakitty On 2009.10.09 08:54
AL.... your awesome ......i too cried, and laughed...Jim has spoken some of the same things to was like reading what he has told me.

I have to agree with you on the stages thing...i read and read about the stages and i can place my Jim somewhere in between 3-4 but on the other hand i can place him in other ones.... He has so many symptoms and where he is at with them is all across the board. As you have said each person is affected in their own way.

Jim goes to a patients website and chats with some people on there and is always getting the comments of oh so sorry to hear you are that bad...However, from being on here i know that he is not as bad as some patients on this board.

Thanx Al ......

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