New to the forum. Wanted to say hi to all. My mom was diagnosed with bulbar ALS about 1 yr ago. Had symptoms of same for another 1 yr prior but we all thought she had suffered a limited stroke affecting speech/swallowing. Silly us! My husband and I are nurses and it fooled us! Never in a million years had I associated ALS with an 84 yr old....course it also fooled our speech therapists for a while too. Mom has a G/J tube now for about 5 weeks. She has lost about 40 lb. since the dyphagia started. Unfortunately she thinks her new weight is just wonderful (118 lb). Kept putting us off getting the tube put in. She will not agree to having continuous feeds w/J tube overnight, so we have to bolus the feeds through the G tube during the daytime. So of course she has no appetite which is probably a blessing as she has MAJOR problem swallowing. Doing all her meds through the G tube also now.
Got a Dynavox lightwriter about 6 months ago and is able to use it pretty well as she still has good strength in arms/hands. Has some lower extremity weakness but still getting around without walker. Biggest problem is her endurance and getting short of breath. I am certain she has diaphragmatic involvement too. She can't sleep well at night; sleeping during the daytime (unusual for her), increased memory problems. We are awaiting pulmonary consultation. Just taking a shower totally wipes her out and I need to assist her.
I would love some input on the use of bipap. Do you need to have a sleep study?
My husband has a c-pap maching for sleep apnea but I have not seen a bipap machine in use before.
Been reading the forums for the last couple of days and love the supportiveness of the group. I think you are doing wonderful things for each other! If you have any nursing questions for me, I would love to help in any way.
Got a Dynavox lightwriter about 6 months ago and is able to use it pretty well as she still has good strength in arms/hands. Has some lower extremity weakness but still getting around without walker. Biggest problem is her endurance and getting short of breath. I am certain she has diaphragmatic involvement too. She can't sleep well at night; sleeping during the daytime (unusual for her), increased memory problems. We are awaiting pulmonary consultation. Just taking a shower totally wipes her out and I need to assist her.
I would love some input on the use of bipap. Do you need to have a sleep study?
My husband has a c-pap maching for sleep apnea but I have not seen a bipap machine in use before.
Been reading the forums for the last couple of days and love the supportiveness of the group. I think you are doing wonderful things for each other! If you have any nursing questions for me, I would love to help in any way.