Has anyone had pulmonary rehab?

[Sammantha]

Has anyone had pulmonary rehab and does it help? Thanks, Sam

 

[joelc]

I have had several requests from PT's about this, they don't understand ALS and think they can ween me off the vent. From my experience it does not work that way. I am not going to punish myself by submitting to their idea it might help. It takes a lot of work to breathe without help and actually makes things worse, once you strain a muscle or hurt it it does not heal.

 

[Sammantha]

I am sorry you have had that experience... I feel like i will be the only one their with this problem. Its restictive and they will know that, but everything i read says they encourage lots of excersize! Its like they assume everyone who comes in is overweight or a smoker of fifty years... They will give me that funny look they give me when i go to the ALS clinic. Like what the hell is she doing here. I want to bring up things that have happened, scary situations with breathing. They will teach me breathing techniques and i will probably teach them a thing or two. I used to think i was having allergy attacks and would rush to the hospital only to have my breathing get better with rest.... Now i know better and do not go to the hospital. I know that drinking alcohol and taking anxiety medication will surely cause shortness of breathe! I have found that doing lots of laundry will cause it also! I also have found that eating a big meal makes it harder to breathe, especially if you eat and then do physical things. Strenuous excersize, especially swimming underwater cause abdomen/chest and back muscle pain that lead to worsening of shortness of breathe.... I will tell you one thing i am not paying 50 dollars a week for them to tell me stupid stuff. I like that they will be monitoring my FVC, i dont get that since i quit seeing the ALS specialist, he never checked it anyways...........I read that they do not reccomend pulmonary rehab until your FVC is 70% or lower or that you have a restricted breathing disorder that is not going to get better.... Mine was <85% and they know because of muscle that it is not going to get better.........................Thanks for replying. Sam

 

[Sammantha]

ps.. joelc

PS. joelC.......... I have not been diagnosed with ALS but i have been diagnosed with a restrictive lung disorder due to weakened chest/diaphragm/ and abdominal muscles... Tell that doctor that you know someone who had a speed up of progression because they were excersizing every other day especially the core area. It made the muscles weaker, and now i have to get help with breathing.... Excersize is not always the answer! If it was we would all be better............ Its good for mobility and joints but thats it!

 

[Al]

Back in Jan. 2005 I had to go to a Rehab hospital to get set up on Bipap. I was there 5 days and nights. They monitored my breathing at night and tried different masks. I was in the ward with the COPD and Emphysema patients doing rehab. I did most of the exercises and learning classes with them because there wasn't much else to do all day and the RT and doc figured it might help anyway. They were there 3 weeks if I recall right. They did my program a bit different than the others. Hopefully they would tailor a program for ALS as it is way different than COPD. I can't say it helped me and can't say it didn't. I'd try it. It may help and you can always quit or complain if you think it's hurting you.

AL.

 

[karin]

Al,
which hospital did you go to?

 

[Al]

Westpark Rehabilitation. They're near Weston Rd and Eglington. Dr. Goldstein was my doc. Back in 2004 Sunnybrook didn't have an operating sleep lab so Dr. Webster sent me down there.

AL.