To Virginia Willman re. SND

[Guest guest]

Hi Virginia. I have lots of questions which you won't want to be

bothered with tonight but I will ask them anyhow and you can give me

your thoughts on them whenever you have time if you would be so kind.

, my husband, has rigidity in his right arm, flexion of his

neck, pain across his back and shoulders, pain in his legs an feet.

He seems often to be confused lately and has difficulty breathing.

His rib cage is not moving hardly at all. We can't seem to get much

information out of the doctors here so I'm turning to the group for

help. I have not noticed he has postural hypotension. He does have

gastric disturbances such as constipation and his appetite fades away

a bit. He has a whispery voice and his handwriting has deteriorated

severely. He seems to have excess mucous in his throat. I have no

idea of the stages of this disease or where we are at this point. I

was reeally hoping for someone who may be a little further down the

road than we are to give us some pointers. Would you be willing to

help?

[Guest guest]

Hi Pat,

My husband has a lot of rigidity, head forward to left, but no OH.

As long as we could, we saw the chiropractor which helped greatly with his

neck and back pain. (Our chiropractor made house calls for a while) Leo has

all the symtoms you mentioned except for breathing problems. His neurologist

put him on the maximum dosage of Baclofen (20 mg 4 x a day) and this really

helps with his spasms and rigidity. He does not move anything except his

head a little, has completely lost his voice and has a tube for eating. My

recomendations would be to get therapy from speech, physical, and

occupational therapist (whoever you can). Exercise everything as much as

possible - use it or lose it- eventually that won't work anymore but it

prolongs the quality of life. The mucous in the throat is typical and there

are various meds that help but we just use a suction machine and remove as

much as possible. Leo has apnea, his maximum time between breaths is about

25 seconds but he is not oxegn deprived and I'm not putting a mask on his

face all day. All he can do is watch TV. Hope this helps, hope I haven't

overloaded you, and if you have any more questions, please ask.

Ginger (my name is Virginia, I prefer Ginger)

To Virginia Willman re. SND

> Hi Virginia. I have lots of questions which you won't want to be

> bothered with tonight but I will ask them anyhow and you can give me

> your thoughts on them whenever you have time if you would be so kind.

>

> , my husband, has rigidity in his right arm, flexion of his

> neck, pain across his back and shoulders, pain in his legs an feet.

> He seems often to be confused lately and has difficulty breathing.

> His rib cage is not moving hardly at all. We can't seem to get much

> information out of the doctors here so I'm turning to the group for

> help. I have not noticed he has postural hypotension. He does have

> gastric disturbances such as constipation and his appetite fades away

> a bit. He has a whispery voice and his handwriting has deteriorated

> severely. He seems to have excess mucous in his throat. I have no

> idea of the stages of this disease or where we are at this point. I

> was reeally hoping for someone who may be a little further down the

> road than we are to give us some pointers. Would you be willing to

> help?

>

>

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