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Active member
Jul 6, 2005
Loved one DX
east amherst
Hi All! So, so glad that you are all here. I know I don't post alot but you have all been wonderful...Some may remember, my brother age 46 was diagnosed several months ago with Familial ALS. Long story very, very short (could be very, very, long), his weight dropped from 155 to 107lbs in 2 months and he literally almost starved to death. Anyway, after PEG tube, respitory distress from bolus feeding along with aspiration pnemonia, and finally a trach, he is on the road to recovery. He has the trach for suctioning as his breathing is ok. Anyone here have any vent or trach info they can pass on? Also, do any of you have an adjustable bed? I don't mean a hospital one but more of a craftmatic or something like that? We are looking for one for home and don't know which way to turn as this has all happened so quickly!

I just got back from Florida and when I visited him last night he was just laying there, I told him that he can't just stare at his monitors all day and got him up(with the help of nurses) and got him in a chair, etc...I think he doesn't know what to do with himself at this point. I told him that even though he can't get on his ice skates and coach his hockey team, he can still 'coach' from the sidelines, etc...I mean he won't even look at TV and I really think it's from not knowing what to do with himself. I made his wife bring up the bills and all of his mail and told her that no matter what he says, make him 'have a say' in the daily activities at home, this will give him a purpose...Any comments?

Hello Janice,
We seem to be in the same boat! Dad received his trach with the ventilator last week. He is still adjusting to it. 3-4 days ago he had a different trach put in that would allow him to talk while the vent is turned off. Each day he turns the vent off for a short amount of time and talks. Dad needs the trach and vent because of his weak breathing. The day after he got his new trach, he was put on a different vent too. The vent is a portable one and it is pretty high tech. All of the ICU nurses were excited to see it because it is supposed to be top of the line. It was flown from CA with a spokesperson, so you know it must not be cheap. It is called the Newport HT50 Ventilator.

I have found that the suctioning with the trach is the hardest and scariest part for me. I still have not suctioned dad, but I will be a lot before he goes home. While suctioning him, he coughs and coughs and it seems to take so much energy and strength. It reminds me of when you are sick with the flu and are dry heaving. The suctioning is supposed to get better with time (we won't have to do it as often once his throat adjusts to having the trach and starts healing).

A person at the hospital is ordering a hospital bed for dad. I have the same question about if a different bed might be more comfortable and just as easy for him to get in and out of. Something about a hospital bed just doesn't sound too appealing if you know what I mean.

Dad also goes through days where he does not want to watch tv or do much of anything but lay in bed. I think it is part of the realization of what is happening to him. I can't even imagine what it must feel like to give up all control like he has. He also has days where he wants to watch tv or listen to music on head phones. Dad loves music, and this has helped him a lot.

I think the biggest thing that we are trying to do is give dad back some of the control he is used to having. Whether it is making a decision on if he wants visitors or not, or if he wants to get out of bed, at least he is voicing his opinion. I want him to still feel like the "man of the house."

Let me know if you find out any information. It is actually nice to know that someone else out there is going through the same thing as my family...just wish we didn't have to go through it. My email is [email protected]
Hi Janice. A friend (don't know why I seem to have all friends with problems) has a back problem and he and his wife bought twin Craftmatic beds. They are expensive but do all the things a hospital bed does but don't have rails etc. They think thay are great. Try looking in the yellow pages under bedding and see if you can find a dealer with a used one and just buy a new mattress. Also the ALS Society or MDA might have a loaner. I know they have hospital beds but it doesn't cost anything to ask if they have something that doesn't remind you that you have this great disease.
Good idea keeping your brother in the loop. You need something to keep your mind occupied. If he coached hockey he must really be depressed if he didn't watch the Olympics. It might be time for some happy pills. Sometimes people don't realize how depressed they really are. This is a very depressing illness and sometimes it just takes time to come to grips with it. Some of us take longer than others and there is no set time for life to kick back in. Hopefully he'll come around soon.
Speaking of "happy pills," the docs gave my dad some antidepressants a couple of days ago, and it really seemed to lift his spirits. I don't like the idea of antidepressants because of the side effects they can have, but if they make dad feel better, I am TOTALLY for it. It is worth seeing if your brother would be interested in them. I got your email Janice. We will definitely have to keep in touch.
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