Brother is starting respiratory problems...

[trisha p]

Hey Guys,

Last week my brother had his first experience waking up having trouble breathing. I believe he phrased it as he woke up losing his breathe. Being so far away, I can't do much in terms of ensuring his doctors are providing him with the best information on his options. He's been to the clinic in Calgary every month but his respirologist has not yet even spoken to him about what to do when he starts experiencing problems.

Al, I think you asked me before whether he had a bipap and when I asked Dwain about it, he responded with a "bi-what?". Hadn't even heard of it at this stage of his progression, which shocks me. What are the standards that the various ALS clinics follow in giving this information? It seems all they have done is give him some sort of oxygen tent for supplemental oxygen - which to my understanding may or not even be effective. Any advice here would be greatly appreciated so I can advise my brother and his wife on what they should be asking the respirologist next week at the clinic.

Thanks all,
Trisha

 

[Al]

Hi Trisha. I think most of the clinics should be running along the same lines but some may have variations because of the personality and nature of the people that work there. Has Dwain gotten the Living with ALS binder from the ALS Society? If not you can download it from the site at the top of the page under ALS Society of Canada. It has quite a bit of information about breathing and just day to day living with this disease. Also if you go to this link it explains a lot.
http://www.alsindependence.com/Treating_Respitory_Problems_in_ALS.htm

 

[trisha p]

Hi, thanks Al. I know he has the manual, received it right at diagnosis but the question is whether they read it; which is an entirely different matter. I know a little more because of all the research I do on my own, but not living near him day to day, it's hard to know what to recommend myself. I do also have the manual but I'll forward him the other link from ALS Independence. I also know of the device used to increase the amount of oxygen one can inhale (I forget the name) - sat through a demonstration of it at an ALS Conference a little over a year ago. Anyway, I'll forward the information to him and some questions to ask at the next clinic. I know his wife has had a hard time reading up on things because it makes it too real for her, but I also know that as time continues, she is going to have to be more knowledgeable as his primary caregiver. I wish I lived closer so that I could help out more. 3000 km away is a long distance when someone you love is going through something like this. Maybe it's time to consider moving out there for a while....I have no family of my own so it's just a matter of closing up house for a while if necessary.

Thanks for the advice and for listening, as always, it's very helpful and appreciated.