Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Dale re your decision to get the baclofen pump. I have HSP and have had the pump since 1998, one of the things the Dr said to me when we first talked about the pump, was that the pump wouldn't make me or help me walk again which I didn't expect. I had been on oral baclofen for 18 years and the pump had been a big help because it is a much lower dosage goes right to where it is needed and does help the spasticity a great deal, one of the ways I judge is how much I have to fight with my legs getting in & out of my car or how hard I have to fight with my legs getting them bent so I can sit properly in my wheelchair, first thing in the morning that is always a big challenge and I'm even considering having the dosage changed for during the night and early in the morning that is another good thing about the pump, it can be adjusted with differnt dosages for differnt times of the day, right now mine is a steady dose and it works but I am thinking about increasing it for night time & early morning, could never do that with the oral medication. I don't know how old you are or how long it has been since you received the diagnosis of PLS, but I am 55 years old will be 56 this year and was 7 years old when I was diagnosed with HSPm my father had itm, his mother and 3 of her siblings as well as her father & possibly her grandmother. I digress but I guess I've had a long time to get used to the idea of having something wrong with me and have gone through the progression of not using anything to walk with in my early years to using a can at 30 and going to 2 sticks shortly after that and I walked or should I say drug myself around on those sticksfor about 15 years and when I started having such horrible back problems went to the chair all the time. I know we all fight using a wheelchair, like the chair makes us more disabled than we are stumbling around with a walker, crutches or whatever. I just want to let you know the chair has set me free, I am able to do more from my chair than I ever was able to using crutches, I wouldn't go into a mall or big stores or places where there was a lot of walking involved because I might get somewhere and not be able to get back out not to mention the fatigue from dragging myself around. With the chair I love to go to the mall and I go all over, I also work full time 40 plus hours a week whenever there is overtime available, do my own grocery shopping, my own laundry all of my own personal upkeep and hygene and I think the chair makes a lot of this much easier. I'm not telling you to give up and go to the chair right now, we each have to find our own time and I fought the chair for years probably longer than I should have, but I just want you to know the chair is not a death sentence, it is a great way to get around it beats sitting at home and I for one am not going to sit at home, the world needs people like us out there doing and smiling. So take care of yourself good luck with the pump surgery it isn't too bad, the worst thing for me was the being flat on my back for 24 hours and I'm on my 2nd pump I call it a godsend, but half of the battle is knowing that there are limitations the pump is not a cure. I'll keep you in my thoughts & prayers and look forward to hearing how you are doing, all my best Donna Sampson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 To Donna S, What a great email you sent Dale about the pump. I think it is very encouraging no matter what state we are in. Your attitude is terrific! Most of us on this site have only had to deal with this for several yrs while you have fought the battle and seem to have won for many yrs. Here's to many more victorious days. Arlene in Texas (PLS?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Thanks for the nice message. I am in a lot of pain today with my legs and low back just aching from being so tight. The ham strings feel like they will break any minute now... Yes, if the pump can take care of that, I would be very happy. As my wife says, it's painful just to watch me move... As far as the w/c I did call my doctor yesterday to get the paperwork started for one. I have tried to accept it but my mind cannot keep up with how fast my body is deteriating. I started with major symptoms about a year and a half ago being diagnosed in Dec. of 2002 and verified one year ago. A year ago I could walk unassisted and was still going for mile walks. But it seems to be going faster and faster, I got a walker in Dec. by Jan. had to use it full time. Had to give up driving a month ago and now a w/c. We were expecting that this would happen but figured we had a few years... But even with all of this if I could get rid of one symptom it would be the exhausted/fatigue. I write this with half closed eyes, mind numbing exhaustion but I usually can't sleep... I just turned 51 on the 5th. Sorry, didn't mean to get so down sounding but your message kind of brought it out of me. So it's all your fault ;-) But I do want to thank you again, your giving me some hope that maybe the pump will help me. Who knows, maybe it will surprise us all and I will walk again!!! Have a good day, dale Re: Digest Number 2391 > Dale re your decision to get the baclofen pump. I have HSP and have had the > pump since 1998, one of the things the Dr said to me when we first talked > about the pump, was that the pump wouldn't make me or help me walk again which I > didn't expect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Hi Dale, Sorry you are experiencing such discomfort. I know, when I get pain (and it's everyday, just less some then others) I feel like a rag doll. I too was offered the pump but am not mentally ready to get it. I've decided to try the low dose naltrexone and see how that helps. I'm trusting the Lord for better things for all of us. Go for what you feel will help. I'll be praying for you. I hope this will be the answer you are searching for. Take care and... God Bless Yolanda Re: Digest Number 2391 > Dale re your decision to get the baclofen pump. I have HSP and have had the > pump since 1998, one of the things the Dr said to me when we first talked > about the pump, was that the pump wouldn't make me or help me walk again which I > didn't expect. Quote Link to comment Share on other sites More sharing options...
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