Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Diane, It's very encouraging to hear that the pump has worked for you!! After reading the baclofen pump survey results, I'm trying not to be too hopeful! I am 52 and have had symptoms for 9yrs., diagnosed 5yrs. ago here at the Mayo Clinic. I guess I am probably one of the ones with slower progression....I can still walk around the house without cane or walker, but it's slow going & I am quite spastic. When I go out, I use a walker or hang onto someone's arm. I have also been taking LDN for more than a year & I think that has slowed the progression. I have the pronounced startle reflex and some problems with my speech. Did you before, or currently have speech problems? I live in a 3 level home & have to be very cautious on the stairs--- the master bedroom is upstairs. We have been looking into adding a main level bedroom. A success with the pump would possibly eliminate that need for a while.... I have a wonderful supportive husband, & 2 of 3 children still at home, ages 18 & 16. My health affects the whole family. I have so much to be thankful for, but I would be willing to try the pump if my quality of life could be improved. Does the pump protrude from your abdomen? Someone on the survey said they were afraid to use a seatbelt...Do you feel like your movement is limited because you're afraid to displace the catheter? If you want you can share with the group or e-mail me directly at lpisansky@... Lana in MN > Hi everyone, > > Was there a baclofen pump survey done at one time? Can anyone tell me > how I can access it? > > Does anyone have any opinions positive or negative about the baclofen > pump? I know unfortunately it didn't work for Dale. How about anyone > else?? > > I've asked my neurologist to refer me to someone in PM & R about whether > or not I'd be a good candidate. > > Thanks. > > Lana > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Lana I have a baclofen pump I've had it almost 4 years, I was diagnosed with PLS in 1996. I began noticing some problems in 1992, I am now 61 yrs old. My hope in obtaining the pump was to maintain my mobility & activity level. I did well in the beginning & did not experience the severe fatigue the oral medications caused. I guess I would have to say that I am glad I have the pump, although it did not improve my condition the way I had hoped. I have weight around my middle so I have no problem with the pump protruding. If you lean against something solid you feel the pump. I do not find mine to be at all delicate, I can move about in any position, lean against it, use a seat belt with no problem. It takes a while to get use to feeling something hard in your abdomen. All in all I found the surgery & recovery to be quite easy. I hope this is some help. Good luck Pat from Cincinnati Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 If you do not mind, I will answer each question after your questions. I do not mind answering for all to read. Remember, these responses are mine and mine alone. Diane lpisansky wrote: Diane, It's very encouraging to hear that the pump has worked for you!! After reading the baclofen pump survey results, I'm trying not to be too hopeful! I am 52 and have had symptoms for 9yrs., diagnosed 5yrs. ago here at the Mayo Clinic. I guess I am probably one of the ones with slower progression....I can still walk around the house without cane or walker, but it's slow going & I am quite spastic. When I go out, I use a walker or hang onto someone's arm. I have also been taking LDN for more than a year & I think that has slowed the progression. I only hold on to my husband's or someone else's arm if I am on very uneven ground. The University of Utah's PT people worked on my confidence and that is something I have acquired since the pump was implanted. I surprise myself when I go off of a curb without help, but it is my own need NOT to be afraid. I surprise myself a lot by the things I do now! I have the pronounced startle reflex and some problems with my speech. Did you before, or currently have speech problems? My startle reflex is almost nil. I still hear sounds more than others and smell things before others. As for my speech, it is so much better. People have really noticed the improvement. Now and then it is a bit slurred, but very, very rarely. I live in a 3 level home & have to be very cautious on the stairs--- the master bedroom is upstairs. We have been looking into adding a main level bedroom. A success with the pump would possibly eliminate that need for a while.... We have an elevator in our home. When we looked at property in Utah, we were told we could build a one-level home on the lot we fell in love with. After talking with two builders, one told us he would rather lose our business than tell us we could build a one-level house on this lot. We went with him. We loved the view and decided an elevator was the way to go. It is a wonderful invention for home-use. I rarely use it since the pump was implanted for I use the stairs most of the time. If I have a package or something which keeps me from using the railing, I take the elevator and not the stairs. I have a wonderful supportive husband, & 2 of 3 children still at home, ages 18 & 16. My health affects the whole family. I have so much to be thankful for, but I would be willing to try the pump if my quality of life could be improved. We have been married 39 1/2 years. My husband, Burt, is wonderful, just as yours is. Our son is a professor, just like his dad. Our daughter is in her third year of residency in NY in podiatric surgery. She learned about PLS in medical school and went with us to The Cleveland Clinic on one of our visits. She was using terms with our neurologist which we did not understand. She explained a lot about PLS to us when I was diagnosed.She has helped me with shoes and ideas to help my walking. Our son is 36 and our daughter is almost 33. AM I REALLY THIS OLD???! I still look around at times when they say " Mom " for they can't be talking to ME!! Does the pump protrude from your abdomen? Someone on the survey said they were afraid to use a seatbelt...Do you feel like your movement is limited because you're afraid to displace the catheter? The pump protrudes a bit. I barely notice it. I move all I want and use a seatbelt without feeling a thing. All-in-all, I tell people I am bionic and work on a computer chip!! My battery is good to go until the end of October for I do not use a lot of baclofen a day. I get a fill-up at that time! One person said I sound like a car getting an oil change!!! Lana, attitude is the most important thing. Yes, I have a degenerative illness (I tell people I am degenerating so I am a DEGENERATIVE!), but I laugh and live without feeling sorry for myself. I do know I am lucky for I am at the far end of the PLS spectrum where my symptoms are not as bad as many others, but I am NOT going to give in and worry about what I cannot do. I am just so happy for what I CAN do!! If you want you can share with the group or e-mail me directly at lpisansky@... Lana in MN > Hi everyone, > > Was there a baclofen pump survey done at one time? Can anyone tell me > how I can access it? > > Does anyone have any opinions positive or negative about the baclofen > pump? I know unfortunately it didn't work for Dale. How about anyone > else?? > > I've asked my neurologist to refer me to someone in PM & R about whether > or not I'd be a good candidate. > > Thanks. > > Lana > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
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