Support for newbie

[3lli]

Hi...
I'm new to the forum. My husband was given an official diagnosis of bi-brachial ALS in March 2010, although he had suspected ALS for several years. Our doctors called my husband's diagnosis bi-brachial ALS not the muscular atrophy called bi-brachial amyotrophy, even though ALS is Amyotrophic Lateral Sclerosis, all these labels don't change the facts or symptoms.
Bi-brachial ALS seems similar to bulbar but his difficulties started with his diaphragm and neck. I have since learned that we have breathing accessory muscles in our neck which explained why he was having pain and difficulty holding his head up. The muscles were trying to compensate for his diaphragm. He has been on oxygen for over 3 years due to his weakened diaphragm. At this point all his food is pureed, his speech is barely a whisper and difficult to understand, he gets winded very quickly when moving around but he still has use of his extremities, although they have weakened. He has a PEG tube which he uses for his meds and should be using for Ensure or Boost but he's hard-headed. Even though he still eats regularly he has dropped too much weight.

One of our issues is his inability to sit for more than 30-40 minutes. He finds it necessary to stand in order to press his abdomen against his chair, helping him exhale. When we shower, he rests against a boat bumper, which has been tied to the grab bar, so he can press and get help exhaling. Car travel has become prohibitive. We have tried using his bi-pap in the car but that offers very little support.

Besides feeling the need to reach out to others in a similar situation, I'm hoping to find anyone who is experiencing the same difficulty when it comes to exhaling. We have seen numerous doctors and unfortunately there doesn't seem to be much assistance for this condition. At times I feel like MacGyver (I'm dating myself) as I try to figure out something to help him.

Thanks for listening...

 

[notme]

HI and welcome.

Is there a possibility of a trach and vent for him if he's unable to use the bipap? Would some type of abdominal support help him use his abdominal muscles for accessory breathing? There is no worse feeling than not getting enough air. How are his O2 sats?

As for nutrition--can you get him to use carnation instant breakfast? I read that it was almost as good as ensure and lots less expensive.

 

[heymom05]

I am so sorry to hear about your husband. I hope you find some answers to your questions. My Kevin is not showing any bulbar signs yet, but is weak in his extremities. We are in this together, so let us know whe. You need to vent.

 

[3lli]

Hi notme,

My husband has opted for no trach or vent so we'll have to deal with things as best we can. I wish I could find something to help with abdominal support so far no luck. Oddly enough his O2 sats (94-96) are good even without additional oxygen during the day. He uses the oxygen concentrator with his bi-pap for sleep. The hurdle is not having muscle strength to exhale.
I've heard the same thing about instant breakfast and I do add it to his milkshakes. His biggest complaint when I suggest supplemental feeding is he's full as much as I try to 'pad' his meals with extra calories it seems to be a losing battle.

And thanks Gina (heymom05) for the support. So true, we are all in this together!

 

[heymom05]

Kevin has also requested no vent, or only long enough to gather our kids together. I think I will be ok with that, but I also am not thinking about it yet. Head in the sand, I know.

 

[3lli]

Your head isn't in the sand....day by day, one thing at a time is my way of getting through this. As long as we, the caregivers, are aware of all the options/equipment available to assist, I actually jot things down in a notebook. For me getting it down on paper frees me from having to remember everything other than the tasks of the day.
Something to keep in mind which I didn't realize, if you are on a ventilator, hospice benefits may be affected. It makes sense but since I've never had to deal with something like this the thought hadn't crossed my mind.

Amy

 

[Georgia Peach]

Newbie from ATL

Hi

My husband has been recently diagnosed with ALS by Dr. Glass at Emory ALS and we are finding our way through this illness. He started out with foot drop around Thanksgiving and loss of energy. He thought he was anemic because he had been able to ride his bicycle for 20 -30 miles at a time. Over the past three years his mileage on his bike riding had dropped dramatically. His oxygen saturation is at 77%. He has muscle twitches everywhere and tremors in his hand so bad that he has switched to his left hand. Mostly the right side of his body is affected.

In the past month, he has fallen several times and now walks full time with cane. Last week one of our friends brought us a mobility scooter to use so that he can walk the dog with me. I have been reading some of the posts and am glad that there is an avenue to reach out to others in the same place. Eventually, his claim will wind its way through the VA maze and we will receive some assistance from them. We are working with the PVA to file our paperwork.

He has the Rx for Rilutek but we want to start the prescription through VA coverage. Besides liver toxicity, is there anything else we need to know about the medication?

THANKS
Georgia Peach

 

[3lli]

Re: Newbie from ATL

He has the Rx for Rilutek but we want to start the prescription through VA coverage. Besides liver toxicity, is there anything else we need to know about the medication?

My husband has been on Rilutek since his diagnosis. He hasn't had any issues with it. We monitor his liver function with blood work every 3-4 months. Wish I could say we've seen a slowing of ALS progression but all we can rely on are the studies that say it will do that.
Only other thing is the expense, thankfully our insurance coverage is good.

I love that your husband will ride his scooter with you when you walk the dog. My hubby's symptoms don't allow that....
Working through this disease is a challenge, take advantage of any and all support/assistance you can find. If you haven't been in touch with your local ALSA chapter you should contact them at your earliest convenience. Our chapter is awesome....from loaner equipment to answering the smallest question.

Amy

 

[abbas child]

3lli, hello. I don't have experience with the Bipap but remember reading about a model (APAP)? which does make folks exhale. You might use a search engine and look it up. I hope it's something that would help your husband.

 

[3lli]

@ abbas child - Thank you so much.....I will see what I can find.

 

[notme]

HI GeorgiaPeach

With O2 sats of 77--they didn't send him home with any breathing assistance at all? That's pretty low. Doctors freak when I'm in the hospital when mine gets near mid 80.

I know with me--low sats were causing headaches and exhaustion issues.

 

[Miss]

whoa! my husband's doctor's made sure he was on Bipap at 97! They started talking about trach and vent at 95! They say it's time to start thinking about it so that he can make a rational decision later.

 

[Chase_Corin]

I worry myself about my father's breathing he has had trouble in the past and had a serious medical condition back in 1998 that he was trached for 5 months. He still has scart tissue that food gets 'stuck' on and he has a har time swallowing when that happens.

I am afraid that if push comes to shove he won't allow the doctors to trach him again in the future should the need arise. My dad also had Sleep Apnia which cause him to be on a cpap machine which helps him breathe at night. It forces a steady streem of air into his lungs to help him breathe, if he dosn't have it on he can't breathe laying down.

 

[3lli]

My dad also had Sleep Apnia which cause him to be on a cpap machine which helps him breathe at night. It forces a steady streem of air into his lungs to help him breathe, if he dosn't have it on he can't breathe laying down.

My husband is the same...sleep apnea diagnosis before the ALS diagnosis. He switched from a cpap to a bipap ST. Doctors said Bi-pap ST is pretty standard for ALS patients I think because it allows data tracking.

The BiPAP machine comes with dual pressure adjustments, it helps him get more air in and out without much effort. It has been very successful for my husband. But he is like your father he can't lay down without it on.

Hubby does have a cpap machine which has been adjusted so he can use it during the day (i.e. a car ride) but he is reluctant to leave his comfort zone which is totally understandable not being able to breath has to be extremely scary and that is something I frequently remind myself of.