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Debruh

Member
Joined
Jan 3, 2010
Messages
10
Reason
CALS
Diagnosis
04/2007
Country
US
State
PA
City
Pittsburgh
My husband diagnosed 2 years ago has a terrible time using his walker and getting up from his lift chair if he has to go to the bathroom. Is there anyone out there who has similar issues? It's not a constipation or diarreha problem. It's like his body freezes up and he gets so weak he can barely stand up. We've told the Neurologist and our PCP about it and they are stumped. He's had an X-ray of his abdomen and most recently a sonogram as well. Nothing produced any results in the mystery. Does anyone know if a similiar problem?
 
Debruh, I am slightly confused...do you mean that he is unable to move his bowels when he is on the toilet? My husband is still able to walk so I do not have any suggestions. I know that someone will be able to assist you. Hang in there! Welcome to the forum.
 
if it's moving bowels try a 1/2 dose of milk of magnesia every other day...seems to help.
 
Debruh, does he need more help, as in a sling lift due to weakness? I do become stiff when in the same position for too long, and more loose after moving around--even in the wheelchair, but certainly in the morning when I'm taken out of bed. Weakness just slowly increases for me...
 
I'm assuming you are referring to spasticity. It happens to me when my wife pulls my pants up for some reason. It hasn't really interfered with daily living for me so I haven't done anything about it. My first course of action would be Baclofen.
 
His problem is very hard to describe. He's by himself during the day and when he knows he need to use the bathroom, his body because very week and he has a very difficult time getting up from his lift chair and then using the rollator over the bathroom. If I am at home, I sometimes have to lift him up myself and walk behind him so he doesn't fall. He claims that after he goes, he's much better. In his mind, he feels that all his problems stem from this particular situation. I think he's really in denial. We have had baclofen prescribed almost 2 years ago in the beginning, and he claimed it made him weaker. I try telling him that this is all part of the progression of the disease and he insits that there's something wrong with his bowels and that's what's causing everything else. More denial....
 
OK, this is only a guess-
First, he may not be wrong when he said the baclofen makes him feel weak. Since it is suppose to help with cramps & spasticity, he could perceive the relaxed effect as weakness. Especially if the dose is too high.

The bowel issue could be a vagual stimulation that cause the stiffness & weakness, although I don't know this for a fact. The vagus nerve is stimulated when you need to "go"; whether that effects the UMN and thus stiffness ? But, I think it could be suspect enough to give him the benefit of the doubt.

As Jeff says, maybe now is the time to try the baclofen again. Start out with really low doses and see if it helps. Of course, I would run this by your neuro first.
 
I understand the problem very well.

We had no choice but to use a lift, no more trying to stand and transfer. Once on the toilet it takes upwards of a half hour before I can go. Then everything is much better, I feel better and stronger.

We use Milk of Magnesia every other day and since we have a bidet we wash and dry. The warmth of this seems to help get things started.

Since all muscles are gone there is no ability to ”push” so it takes time and Milk of Magnesia is essential.
 
I also put faith in the Milk of Magnesia.

A couple of thoughts:

Put a stripper pole near the toilet to aid in transfers.

Is the toilet too low ? I found it mush easier after I installed a toilevator , and also added a bidet to the top.

Glen
 
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