Update on my Baclofen Pump

[Guest guest]

:

Glad to hear you had such a nice trip. Sounds like the pump is working out

well too. I went with Tom Thursday for his pump refill, and we talked to the

doctor about botox injections, he thought it might help Tom's walking. At 620

micro liters a day, his balance is not good. If the botox works, maybe the

baclofen dosage can be lowered. The doctor said Tom's pump is very easy to

fill because he is slim and the port is easy to locate. I watched, and it

still amazes me.

When we left the doctors office, we were walking down a long carpeted hall

way, Tom tripped and fell. He cut and broke a finger in a car door last

weekend, and when he fell, both of us were afraid he was going to fall on the

hand! I was trying to break his fall, but we both ended up on the floor.

After we got him up, we had to laugh at how funny the two of us must have

looked wrestling around on the floor--good thing no one was around. We

realized that tennis shoes and carpet aren't a good idea anymore.

You mentioned waist bands being a problem. Tom's pump is above his waistline

and about an inch from his bellybutton. I guess it all depends on how

longwaisted a person is, where the surgeon places it.

Well, the wind seems to be dying down some, and we are going to take the boat

to the lake and eat supper out there. Tom has promised to keep his hand out

of the water, so that will mean no skiing or tubing this trip.

Have a good evening.

Trish

[Guest guest]

Hi all,

I just wanted to let everyone know how I'm doing with my Baclofen

pump after almost 6 weeks. I really put it to work on our trip to

Greenbrier. It is a lovely resort but is so big that I had to walk

quite far to get to meals and activities. I had a dose increase the

day before we left for our trip. The day of the trip I was still

trying to decide if I needed my 4 wheel walker or if my cane would

suffice. We drove from Sedona to Phoenix to spend the night as our

plane was leaving early in the morning and I get real cranky if I

don't get enough beauty sleep. So my husband and I decided to take a

short trip to a shopping mall prior to dinner and check out my

walking abilities. I've always started off pretty good but rapidly

go down hill when walking any distance. We walked around the mall

for about an hour (I haven't walked that far in almost a year) and

while I was a little tired I was still walking fairly well, without

any aid. So we decided to leave my walker behind and just take the

cane. When we arrived at Greenbrier the next evening I was exhausted

and dragging quite a bit. I thought possibly I'd made a mistake in

not taking the walker. Most of the kids were there to greet us as we

arrived (we had a family gathering to celebrate my mother-in-laws

93rd birthday) and were amazed at how well I was doing. Here I

thought I

was doing pretty poorly but they had last seen me at Easter and the

difference was amazing to them. The next morning after a good nights

rest and I was near perfect! The really amazing thing is my speech.

While the doctors didn't promise much change in my speech, they did

say it could help with it and boy did it. If you'd never heard me

speak before you wouldn't know I have problem. It just gets a little

slurred when I'm tired. Some words are still difficult but I just

try to avoid them. Now I can't wait for Sept. 6th when I go back for

a refill. They said I could get another increase in my dosage then.

They do 10% increases at a time and I had no problem adjusting to the

increase this last time. In fact I forget I have the pump at times.

It is still a little tender at the pump site but no big deal. The

main adjustment has been my clothes not fitting (waistbands bother me

now) so poor me, I have to buy some new clothes. Pity, Pity.

Anyway, I really feel as if this pump has given me my life back.

[Guest guest]

Trish, I must confess, I too had a good laugh at the sight of you two

rolling around. Too bad someone didn't come along, you could have

really hammed it up. I asked the nurse about the refill when I was

there this last time. She prescribed the cream you talked about and

told me they have a template they hold over my pump to see where to

inject the needle. With the cream she said it would be a cinch.

I'm at 55 mcg now, I can't imagine 620! At my dose I get my pump

refill every 90 days. How long does Tom go? What was Tom's original

dosage? Do you remember? I think I need to up it still but they want

to go slowly. It is funny because I think my walking is near

perfect, but in reality it is far from it. But it is a drastic

improvement and feels near perfect to me. I was thinking of the

video Rita talked about at NIH. It is a shame I didn't video tape my

walking and talking prior to the pump. Then when I get discouraged

because it isn't perfect, I could look back and see how far I've come.

Take care....

-- In PLS-FRIENDSegroups, GINGER2552@a... wrote:

> :

>

> Glad to hear you had such a nice trip. Sounds like the pump is

working out

> well too. I went with Tom Thursday for his pump refill, and we

talked to the

> doctor about botox injections, he thought it might help Tom's

walking. At 620

> micro liters a day, his balance is not good. If the botox works,

maybe the

> baclofen dosage can be lowered. The doctor said Tom's pump is very

easy to

> fill because he is slim and the port is easy to locate. I watched,

and it

> still amazes me.

>

> When we left the doctors office, we were walking down a long

carpeted hall

> way, Tom tripped and fell. He cut and broke a finger in a car door

last

> weekend, and when he fell, both of us were afraid he was going to

fall on the

> hand! I was trying to break his fall, but we both ended up on the

floor.

> After we got him up, we had to laugh at how funny the two of us

must have

> looked wrestling around on the floor--good thing no one was around.

We

> realized that tennis shoes and carpet aren't a good idea anymore.

>

> You mentioned waist bands being a problem. Tom's pump is above his

waistline

> and about an inch from his bellybutton. I guess it all depends on

how

> longwaisted a person is, where the surgeon places it.

>

> Well, the wind seems to be dying down some, and we are going to

take the boat

> to the lake and eat supper out there. Tom has promised to keep his

hand out

> of the water, so that will mean no skiing or tubing this trip.

>

> Have a good evening.

>

> Trish