Re: rapid decline

[Guest guest]

lou,

Have you taken Sam's blood pressure? That's a good

place to start. If it is very low, you should call

the doctor. Rob takes 2 5mg proamatine tablets 3

times a day as well as 3 0.1 mg florinef tabs at

bedtime and 4 thermotab buffered salt tablets 4 times

a day to keep his blood pressure in a range that

allows him to function. If Sam is only on proamatine,

perhaps they could add florinef and salt.

You should also be constantly on guard for infection.

Do you have UTI test strips? It could be that he has

a low grade UTI or pneumonia that is not symptomatic

but is causing him to drag. Again, chech his temp and

if it is even slightly above his normal (which is

probably lower than 98.6m call the doc.

It could be part of the disease, but I would not

accept that without checking everything else first.

Carol & Rob

Lexington, MA

--- lou Reynolds mlreynolds@...> wrote:

> Sam is having big problems for the most part--can

> hardly stand (has to be

> pulled up) and then can't walk--dizzy and legs like

> spaghetti. He would

> sleep all day if he could nods at the table (when

> he can get there), has

> lost his appetite (this has been coming on

> gradually), spends most of the

> time in bed, and has gone to a wheelchair, and I am

> learning how to get him

> in it--oh boy, do we have fun. However, a week ago

> he walked around the

> block with his pushcart without stopping on two

> occasions, and that was

> quite good. Is this a normal part of everything? I

> could call the doctor,

> but he wouldn't have much to say, I know, as he,

> like the rest of us, doesn't

> know what to expect. What is the group's experience

> with this sort of thing?

>

> We saw the neurologist a week ago and he walked from

> the car into the

> office (down a long hall etc.) with a cane, but his

> bp was way down, and

> his proamatine has been raised 3 5mg tablets for

> breakfast and lunch and 2

> 5mg tablets at dinner--even though this is really

> pushing the limits on

> this drug, and also raised the provigil to lunch as

> well as breakfast to

> keep him awake.

>

> I notice people on the list going places and doing

> things, and Sam could

> never do that sort of thing--he was diagnosed 4 1/2

> years ago at 74. This

> stay-at-home attitude on both of our parts has been

> going on for a year or

> more, though he could navigate a bit on his own up

> till the last few

> weeks. And thank goodness I found a barber who

> comes to the house. Our

> youngest daughter is being married here on June 22,

> and I am beginning to

> wonder if he can even go to the ceremony. Thanks in

> advance for any

> firsthand experiences that you can give me.

> Lou R.

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

naturally ask the doctor.

think about water and fluids, using the wheelchair and walker, extra

pads for urinary, ensure or snacks to bring with to the wedding.

HIRE A STATE TESTED NURSING ASSISTANT FOR ADDED HELP ON THE WEDDING.

NANCY M.

lou Reynolds wrote:

>

> Sam is having big problems for the most part--can hardly stand (has to be

> pulled up) and then can't walk--dizzy and legs like spaghetti. He would

> sleep all day if he could nods at the table (when he can get there), has

> lost his appetite (this has been coming on gradually), spends most of the

> time in bed, and has gone to a wheelchair, and I am learning how to get him

> in it--oh boy, do we have fun. However, a week ago he walked around the

> block with his pushcart without stopping on two occasions, and that was

> quite good. Is this a normal part of everything? I could call the doctor,

> but he wouldn't have much to say, I know, as he, like the rest of us, doesn't

> know what to expect. What is the group's experience with this sort of thing?

>

> We saw the neurologist a week ago and he walked from the car into the

> office (down a long hall etc.) with a cane, but his bp was way down, and

> his proamatine has been raised 3 5mg tablets for breakfast and lunch and 2

> 5mg tablets at dinner--even though this is really pushing the limits on

> this drug, and also raised the provigil to lunch as well as breakfast to

> keep him awake.

>

> I notice people on the list going places and doing things, and Sam could

> never do that sort of thing--he was diagnosed 4 1/2 years ago at 74. This

> stay-at-home attitude on both of our parts has been going on for a year or

> more, though he could navigate a bit on his own up till the last few

> weeks. And thank goodness I found a barber who comes to the house. Our

> youngest daughter is being married here on June 22, and I am beginning to

> wonder if he can even go to the ceremony. Thanks in advance for any

> firsthand experiences that you can give me. Lou R.

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Lou,

ALWAYS suspect infection when a MSA patient has a sudden rapid decline.

Weakness, loss of movement, fatigue are all signs of dehydration and/or

infection. Ask your doctor and tell them that we said it is a sign of infection

- much better than temperature as a sign of infection as the autonomic control

malfunction of MSA fouls up the temperature control of the body as well as the

BP.

On the BP drop, have you added salt to his diet? The medicines without adding

salt do not seem to help as much for most patients. I would think he could go

to

the wedding in a wheelchair. Charlotte went on an airplane to Disney World for

a

week almost 4 years after her diagnoses of MSA and it was a two hour flight.

Plan ahead for keeping him drinking and other things which help, maybe he could

lay down at the church until time for the ceremony.

Take care, Bill Werre