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Bipep Mask or tracheostomy, which one is more useful for ALS patients
I was diagnosed as an ALS patient in March 2021. Presently I have lost strength in my upper and lower limbs and I use Bipep for almost 23 hours. My doctors recommend tracheostomy for me but the trouble I see with tracheostomy is that we lose speaking. I have also lost strength in my hands and can’t use board for writing to express myself.I would like to know the experience of those who have already had tracheostomy? Do they find it more comfortable comparable to bipep mask and what are their recommendation for other ALS patients. <div>
</div><div>Other members having knowledge of tracheostomy can also give their suggestions</div> -
4 Replies
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My husband is very simiilar to you. starting his 5th year since diagnosis. No use of arms, legs, hands very limited. He is on his NIV 24/7 and can be off for maybe 15 minutes at a time. He cannot write and uses his computer mouse with difficulty.
He uses his ventilator with a nose mask during the day which allows him to talk and be fed. At night we switch to a full face mask.
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I ran into this a few years ago when I asked similar ??s. Lots of pALS chose to forego Tracheostomy, but IMO if you have your facilities and competent care, this solution works (especially if you are not locked in)
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Thank you for your response. I would like to hear from those who are on tracheostomy. How do they feel with it and it’s benefits over NIV
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Hi. My husband was diagnosed in Feb 2021. He is a retired veteran, 27 years in service. He did not want the tracheotomy because he wouldn’t be able to communicate with us. Then, he has some respiratory complications, and we had to decide for the tracheotomy or let him go. That was two years ago.
He is in ventilator and oxygen 24/7.
He lost all his mobilities. After the surgery he has been pretty stable, no hospitalizations at all. He uses an Eye tracker Tobbi DynaVox to communicate with us.
His lungs are always clear. We use daily different devices like, cough assist, suction machine and nebulizer machine for his 3 types of therapies. Thanks God he still smiling, always busy doing a lot of things in his computer, he does all the shopping for the house through amazon, he tells us all his needs and also taking college classes for continue education. My kids and I are his caregivers, and we all are well trained with everything related with the ventilator, tracheotomy care, etc. I thank God because he still alive and we a good sense of humor.
Prayers!
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