Is it the one for breathing, clearing lungs by vibrating or something like that? If so have heard that it not as good as the Cough Assist machine....but no personal experience, just from reading discussions on other forums. Hopefully some one else will chime in here---
Beth (CALS to husband Shannon)
Our clinic pulmonologist (Northwestern in Chicago) seems to be ordering this for everyone. It is called "The Vest" and is marketed by Hil-Rom (major hospital bed company). I can only find 2 studies on ALS patients, seems to be widely used in Cystic Fibrosis patients. One study is VERY small - nine people - and said it does not have any significant results (this was reported in the Oct, 06 issue of the ALS/MDA publication).
The other study is larger, was reported in Neurology (sorry, don't have the exact citation) and reported some perceived benefits on majority of patients, but nothing clinically measurable except less noisy breathing during sleep. If you want to look it up for yourself you can find it under "high-frequency chest wall oscillation" on Google. The company, itself, has a website - but of course it promotes it's product positively.
The idea is to move pooling fluids from the bottom areas of the lungs upward so the fluids can be coughed out, or helped with the Cough Assist. Works like chest percussion physical therapy, except that patient is always in upright position. This theoretically prevents episodes of pneumonia. Have not seen any research that confirms this.
This is NOT a testimonial - we are looking for info on this $16,000 (US) product ourselves. It has been prescribed for us but we are unimpressed. Interferes with quality of life by being uncomfortable, time consuming and clumsy. Would like to see a measureable benefit if we are committed to this thing for life.
Some people in our support group find it tolerable, others swear it causes serious problems. We just want research that is scientifically verifiable and not paid for by Hil-Rom.
Thank you for asking about this product - this is specifically why I joined this forum - to find out who is using what product and how it works.
We are VERY appreciative to AL and others for highlighting scams. We are really into verifiable research and finding useful techniques for managing with this disease. We are not interested in being guinea pigs without our consent.
Would love to hear from others with experience with "the Vest".
Again - much thanks to AL and all the other wonderful people on this forum.
Thanks so much for the reply and the link. I checked out the Yahoo Living with ALS site - and I like this one SO much better. Anyway - the users of the VEST from that site do not seem to have more info than I have right now - some hate it, some believe it works, and a lot of people are shocked by the cost. I hope more people with experience post to this thread because I just hate to cave in to this treatment without more verifiable evidence of a benefit.
It seems to me that this must be rather new since so few responders have heard about it.
We are having a vest and a wrap delivered today. OSU is sending someone to our house to show me how to use the vest and the wrap. The wrap is similar to the vest but it wraps around the PALS like a bath sheet.
They seem to think that I will have a easier time putting the wrap on Don vs. the vest. We'll see. We already have the cough assist machine. Don's pulmonary Dr. thinks highly of the vest. He wants to use the vest then immediately do 4 sets of 4 on the cough assist. Don's daily schedule is 4 sets of 4, four times a day. I've put up a dry erase board in our bedroom so I can keep track of his daily sets. I fear that with everything else going on, I won't remember what I did when so thats the reason for the erase board.
I will report back after we've used it for several weeks.