How to help brother with ALS

[luv2byte]

Besides being available to my brother with whatever he needs what are things I can do or get for him to make life easier?

He is 49yr old, had sx for 1yr now, had premliminary diagnosed 8/06 with a final diagnosed 10/06. He is hooked in to the ALS chapter in his area. He has been giving a 3.5yr lifespan so he has approx 2yr left. He has slurring and limb weakness. He is working full time as a district manager but will probably only be able to keep that up for 6-12 more months.

I have already purchased eating utinsels, button puller, zipper puller, adapter tubes (can be used on silverwear, razors...anything to make them a larger diameter) and a shoe horn. But what else can make life easier? He can tell me what is difficult day to day but I don't know what all is out there to make things easier that I haven't thought about yet.

He has an incredible girlfriend who has been with him almost 5yrs and I have made sure he is making it so she knows clearly what his wishes are and that when time comes that he sign over POA (durable and medical) to her and I will fully support whatever they have chosen together.

Any advice would be great.

 

[liz]

Hi Ellie -

Welcome to the forum. Your bro is lucky to have such support.

Who told him that he has 2 years to live? That might end up being true but it also might not. If you browse the site you'll find PALS that have been hanging around for 10 years. One of my in-laws recently made a well-meaning remark but basically talking as if I was already gone. This really bothered me - told people to please not bury me before I'm dead. I know this disease is going to get me in the end but I'm not checking days off on the calendar.

I personally like when people take me out (dinner, a play, shopping) and they do the driving. Even though I'm still working and driving, I feel less fatigued if someone else drives so as a result I can enjoy myself more. Also I am more comfortable in public when someone is with me who understands my condition can kind of pitch in if I fumble something.

If you google "adaptive aids", you can find some web sites that sell adaptive aids. Also, if your brother goes to an ALS Center (which hopefully he will), they have occupational therapy which can give good direction in this area.

You also might want to tell your brother about this forum. Maybe it would do him some good to chat with other PALS.

Nice to meet you.

Liz

 

[luv2byte]

My brother is working with the ALS chapter in his area and he has an ALS specialist. As for the 3.5 yr timeline the guy that did it was from ALS org and said it was based on expirience and my brother's progression of symptoms. It isn't a rule but an estimate. In the last two months I see changes in my brother, especially with slurring - but I love him just as he is.

As for different aides to help him. Last month I got on the net and found some pretty neat products for him to try out. He loves them, espeially the button puller for his dress shirts and it works for his pants too. I ordered a few more things this past weekend as well - like a knob turner (for things like stoves), key adapters (to make keys bigger and easier to turn) and another set of silverware.

He knows he an let me know if he needs anything, so does his girlfriend. I figure they have enough to deal with in medical bills that the little things I have been having sent to him can possibly make a little difference for him.

He isn't dead yet which is why for Christmas I gave him the presents that I did. Our other brother is of the same mindset too. While our brother is alive and kicking he will be treated no differently.

Actually---we just had a family reunion in Nov. I wanted to do before my brother's symptoms were to a point he was really self concious of them. He got to see family he hasn't seen in 20yrs. At one point he pulled me aside to see if they all knew about his ALS. I told him they did. The confusing thing for him was that they were not treating him or talking to him any differently but they also didn't ignore his condition either. He was so surprised-pleseantly. He doesn't try to hid his ALS or ignore it, which I think ca make others more comfortable with it.

Any suggestions for aides you found helpful would be great.

 

[Mike27]

Hi there,

There is a whole range of equipment to make life easier for us PALS and for CALS.
One of the first things I got was a good walker with a seat. Balance became an issue early on as did fatigue. A walker with a seat really helped.

Also I got a good reacher that can fold up for storage. Don't get the "As seen on TV" one, I find it hard to manipulate. Go to a medical supply place and grab one. I went to an automotive store and got a telescopic magnet for coins or keys that I drop. It collapses to the size of a pen.
He probably has a cell phone, but make sure it has an auto-answer function with an ear piece, and auto-hang up. makes things easier!

If his speech becomes a real issue, you can get different devices to synthesize speech. I have a Lite-Writer which is relativley small and you can program in phrases and such. I also printed some flash cards on business card paper, that I carry with me with common phrases. Stuff like "Where is the washroom?", "I have ALS which affects my voice", "Please contact my wife at xxx-xxxx." and the all important "I'd like an extra large coffee, double-double please". (Can't go on without that one!:wink: )

That's a few things. Also don't buy into to the whole "3.5 years to live" that they tell you. They told me that too, about 13 years ago. It drives me nuts that people, whether a doctor or the Society, says that because it leaves no room for hope.
Bottom line is-they don't know. Look at Stephen Hawking who has had this for 40+ years! There are others.

I love when you said that you treat him no different than before. That is perfect! Your brother has great family!

Anyway, I hope that helped somewhat.

Cheers!

 

[luv2byte]

I don't buy into the 3.5yrs fully. Basically the way we look at it is he is with us here now and we, together as a family (it's just my two brothers, myself and 2 spouses) will face each challenge together and we expect the worse but hope for the best but no matter what I never what him to feel as if he is suffering.

I will go to Schucks this next week and pick up a pen size telescoping magnet for when he drops some things. As for a grabber, he wouldn't be able to use it, he has very little muscle use of his hands. To drink it has to be a fat glass/cup and able to use both hands.

I will try the recommended search for 'adaptive aids'. Thanks for that tip. I will love to learn anything I can that can be of help to him but yet no take away his dignity or pride.

I love my brother very much and want to do anything I can to help him ease into what is quickly becominng a new way of life for him.

Thank you all for helping me learn and answering my questions.

Ellie