smacish
New member
- Joined
- Jan 21, 2016
- Messages
- 4
- Reason
- CALS
- Country
- CA
- State
- BC
- City
- North Vancouver
After finding the love of my life 5 years ago and just planning our retirement traveling with our toy hauler all thru out Canada and US my partner was diagnosed wish ALS on December 18,2015. Not only are we in full shock but we found out today that he has the worse type "Respiratory Onset ALS". I just would love to find out more if you all would be so kind and pardon my lack of knowledge.
I have noticed Dan (my love) over the last year really out of breath, he has lost 60 lbs. is slouched over as from what I understand his muscles around his chest have so deteriorated that is why he is so slouched over.
As of now he has no problem breathing.eating - has some slight issue with his right foot and can only walk for short distances because of the lack of oxygen.
We are awaiting for a bi-pap machine and the respitologist has also ordered a nebulizer and possibly oxygen.
We went the other day to the Centre here (GFStrong) and had meeting with social worker, nurse, physiotherapist and dietician....all were very positive as they said he was doing good and his strength is still strong as well as no problems talking or eating. Then today we go to the respitologist and he basically has given Dan a death sentence in the next week, moth, six months. He just sat down and told Dan to basically get his affairs in order. Not a hand shake or anything positive,
My poor man had, what we found out later, a panic attack but he got super hot, flustered stood up, passed out and super low blood pressure. They called 911 and was brought to hospital where all ecg and blood tests looked good.
I guess really no-one is really giving us an answer. Some of the docs say up to 2 years and this one basically says anytime.
I'd love to know more about respitory onset. All I know is that it happens in only 3% of ALS patients.
I can't see him dying so quickly...as he still eats, talks, walks ...it's his damn breathing. Any ideas or suggestions of who to see or what to do next would be so wonderful.
Thanks for listening - Sue
I have noticed Dan (my love) over the last year really out of breath, he has lost 60 lbs. is slouched over as from what I understand his muscles around his chest have so deteriorated that is why he is so slouched over.
As of now he has no problem breathing.eating - has some slight issue with his right foot and can only walk for short distances because of the lack of oxygen.
We are awaiting for a bi-pap machine and the respitologist has also ordered a nebulizer and possibly oxygen.
We went the other day to the Centre here (GFStrong) and had meeting with social worker, nurse, physiotherapist and dietician....all were very positive as they said he was doing good and his strength is still strong as well as no problems talking or eating. Then today we go to the respitologist and he basically has given Dan a death sentence in the next week, moth, six months. He just sat down and told Dan to basically get his affairs in order. Not a hand shake or anything positive,
My poor man had, what we found out later, a panic attack but he got super hot, flustered stood up, passed out and super low blood pressure. They called 911 and was brought to hospital where all ecg and blood tests looked good.
I guess really no-one is really giving us an answer. Some of the docs say up to 2 years and this one basically says anytime.
I'd love to know more about respitory onset. All I know is that it happens in only 3% of ALS patients.
I can't see him dying so quickly...as he still eats, talks, walks ...it's his damn breathing. Any ideas or suggestions of who to see or what to do next would be so wonderful.
Thanks for listening - Sue