Husband with ALS

[Peace and Love]

I am new to the boards. My husband was recently diagnosed with ALS, so I am hoping for education and support. I look forward to knowing you.

[lisag]

Peace and Love,
Nice to meet you.. although I'm very sorry to hear your husband was diagnosed with ALS...Lisa

[tom borchert]

Peace and Love,

Lisa and others on this board would be most happy to help you alone this trip of ALS.

Tom,

[Agios]

Hi Peace and Love,

I am 47-years old and I've had ALS for 4+ years. I am in a wheelchair, have a feeding tube and have been on the vent since January 2006. I cannot use my hands or arms and use a headmouse and computer to communicate. Luckily I have a super wife, a great 4-year daughter who loves her Daddy and a wonderful group of friends...and a lot of hope for the future!

The only advice I want to give is to try to stay one step ahead of the disease as it progresses. There are many devices available to aid in your husband's care; wheelchair, shower chair, ceiling lifts, stair lifts, communication devices and software, Headmouse hardware for hands free use of the computer, g-tube, etc.

For example, don't wait for your husband to have a fall in order to get him a walker or chair...don't wait for him to choke or become dehydrated or suffer from malnutrition to have a g-tube installed, don't wait to throw out your back lifting him in order to get or use lifts, etc.

Learn from my mistakes...you want to keep yourself, your family and your husband as mentally and physically fit as possible in order to deal with this disease.

Also it would be wise to find an "A-list" pulmonologist. A pulmonoligist is a medical specialist who diagnoses and treats lung diseases. "A-list" or "A-team" generaly means the most desired or considered the best in their field. In terms of my perspective I have a pulmonologist who is experienced within his field and also has experience with ALS.

You should feel free to ask specific questions as the need arises.

Peace, Love and Energy,

Agios

[Alison P]

Hi Peace and Love,
It's nice to meet you but sorry it has to be here.
Agios gives excellent advice.... We are all here to help. My 45 year old brother has ALS...diagnosed in 2003, trached and vented in 2004....any questions that you have, just ask.....the people here are fabulous and come with a wealth of information.
Alison