Crossroads - bipap not enough

[miana]

My mom was diagnosed in Nov 09 (lower limb onset) and has been positive and strong throughout her journey. She is now at a crossroads as her neurologist suggests a trach tube since she needs the bipap machine 24/7 right now to talk and to breath (she can still breath without it but only for less then 30 seconds before she needs it on again).
She was asking about these forums because she needs some advice. She is wondering if she should even go that route or not. I thought I would write on her behalf and see what people have to say.
Thanks!

 

[joelc]

As one who has gone that route I highly recommend it! It gave me my life back.

For more information on my experience go to our website.

Life With ALS

 

[thelma313]

Hi Miana, welcome to the forum but sorry to hear about your mom. My father is also at a stage where he cannot breathe without his bipap at all. The decision to trach or not is a personal one that only your mom can decide but I strongly encourage her to look at Joel's web site to see how positive the experience has been for him.

My dad has chosen not to get one simply because he has so little mobility left that and more importantly suffers from horrible constant pain.

Everyone is different and I hope that your mom comes to the decision that is best for her. My heart goes out to you both, I know how challenging this ALS journey is. I hope you find comfort in sharing and venting your feelings here on our forum. There are so many amazing people here to talk to. Best of luck!

Rosella

 

[serenade]

Check out diaphragm inplants as an option, I don't know if it applies to your mom's situation.

 

[mellorama]

Hi Miana,

My mom is also at that crossroads; she uses her BiPAP 24 hours now. For today, she is choosing not to trache. For her, the decision is complicated by the fact that she is still completely mobile and has the use of her hands and legs. Her neurologist is very strong in his opinion that it is tough for older PALS, especially in the United States, with the lack of covered home health care. But I've been doing as much research as I can about her insurance and the state guidelines for home care, training and back -up machines. I want it to be her choice unencumbered by the cost. But for today, she says no.

Hope this helps and let's stay in touch. There seems to be a few of us at that crossroads and I want to share others stories with her so that she know there are options.