trying to maintain as much independence as possible

[mrsack]

HI all-
My husband Larry was diagnosed in September '10 with arm onset ALS. I was wondering if anyone has any suggestions as to how I can help maintain his independence. I have no problem doing anything he needs, but for his sanity, and sense of self-worth, I would like to try to adapt as much as possible so he can do for himself if feasible.

He is at the point where he needs help with getting dressed, and a regular coffee cup is just not an option if he wants to have anything left to drink by the time he gets it to his mouth. He has little dexterity his hands, and his arms and shoulders have wasted to the point where just lifting his arms is work. He has lost a lot of muscle structure in his torso, but is still able function pretty well as long as he doesn't listen to the 'snap, crackle, pop' every time he moves. He has begun to lose muscle mass in his legs, but not enough to affect his gate yet.

Any suggestions you may have will be greatly appreciated. He is a very proud, independent man who was always the one someone else asked for help. So he is not very good at asking for anything for himself.

MrsAck

 

[smwelder]

due to a stroke in 96 i lost the use of my left hand. theres many tricks my OT tought me to be more in dependent. i sugest asking a ot in you hospital for idea. now that i have als and my so call good hand is now becoming my bad hand too i use a straw to drink its much easier. also there are spoons and forks that can be straped to a hand. so i dont have to chase my plate or bowl around i place a ruber draw liner under bowl or plate . hope this info works for u

 

[mrsack]

Thanks smwelder! It never even crossed my mind (toomuch else in there right now), but our next door neighbor is an OT. I will have to have a discussion with her.

 

[GRM2008]

Yes, as smwelder said, there are adaptive utensils that the OT can recommend for eating, and I also looked on-line for things when Mom was in this stage too. I found we had to be pro-active and do our own searching most of the time!......Mom got a "booster seat" commode for the toilet too, so she didn't have to bend so far to sit on it or get up, and handles help too..... A straw is good for drinking, just make sure the coffee isn't super hot!....it feels hotter in a straw because it hits the back of the throat right away....and it's a good idea to have your husband practice sipping with his chin down, as this is much better for swallowing..........even if he's not having any swallowing issues now, it's good practice in case this occurs......as for other things that i can think of right now, is there an ALS center near you? where you can see about range-of-motion physical therapy to keep his limbs moving? This is tricky because most physical therapists are trained to oversee exercises designed to "build muscle" and help a person get stronger, but with ALS, the muscles are not going to get stronger and therapy should NOT be strenuous, just passive moving by the therapist of the person's limbs. NOT RESISTANCE exercises. We had such an issue with this, even when Mom's local PT spoke to the PT at the ALS center to clarify!.....you can be shown what to do, it's so basic, but it can get tiring for you too ..........also, as my Mom's legs got weaker, she would walk with one of us helping her, but this became a problem when she dropped down a few times and we were only able to help lower her to the floor, not pick her up! Had to call EMS to get her back up again..........i strongly recommend finding an ALS/MD loaner center, or perhaps borrowing or buying a used wheelchair for the time being, but if the disease progresses, get a wheelchair with everything through insurance - head rest, one that reclines, foot rests that have different positions, etc......your Husband will need to be comfortable in it......I'm sorry for going on and on, it's just that my sisters and I have gone through all of this with our Mom the past 2 1/2 years, and I'm trying to remember how we managed.......the wheelchair becomes very important for safety....if you can, get your doorways widened too.......and have a ramp built, to specifications..........it makes life so much easier.......and if you have a good, compassionate, primary care doctor, he can help you navigate the insurance stuff to get the things your husband needs......as well as if he needs anti-anxiety meds or anti-depressants (and if you do too!)....and the doc could help if your husband is entitled to some home health care, and the wheelchair issue, commode, etc.......also, a hospital bed might be good for comfort, as it can be raised or lowered to make getting in and out a lot easier...............i could go on and on and again i'm sorry, there were just so many things that had to be done to manage this disease and i really want to help others who are going through it now.........it is so difficult for a person with ALS to accept these changes, to see themselves losing so much of their "normal" functioning....and it's so hard as the relative, to feel so helpless........you want to help, and they need the help, but want to hold on to their independence too.........safety and comfort is all there is.............i say do whatever needs to be done to ensure both, including mental health!.....i wish you well........

 

[smwelder]

your welcome . theres no an hour that goes by that i think how lucky i am to have a caring wife. im sure your husband thinks the same. I thank you and all like you for caring

 

[David_W]

MrsAck:
I'm so sorry you and your husband have to cope with this dreadful disease. Recognizing the importance of your husband's need for an appropriate measure of independence and control - even with little things, like enjoying a cup of coffee - is a pretty big deal and a great starting point, in my book.

Larry's involvement and ideas are also important for several reasons, as are safety and ease. Pretty much all the suggestions posted by smwelder and grm2008 have worked well for me. Your neighbor/OT will likely provide other helpful suggestions. The support of my regional MDA-ALS chapter and clinic and ALSA has been invaluable to my effort to stay a step ahead of the disease and as independent and healthy as possible. Find your local chapters and let them help you.

A couple additional thoughts … I'd suggest focusing on one or two adaptations/changes at a time to avoid being overwhelmed. Another great bit of advice that has worked for me is to start the process of acquiring big things (like wheelchairs, lifts, etc.) before you need them. Then when the time comes, you're all set.

Change the names and your description of Larry fits me. I thought the hardest part of ALS would be losing the ability to do for my family, myself and others. Turns out that it’s even harder to ask for and accept help - not for my family and others, just for me. Kind of a guy thing, I think! Perhaps Larry will understand. ;-)

 

[mrsack]

Thank you all for the great feedback, everyone. It helps so much just to have other perspectives. I find that most of what everyone has said, just points me to the obvious, but I could not see it through fog of emotions that come with this disease. I am confident we can deal with any adjustment necessary, and just knowing that others are willing to share their ideas and suggestions helps immensely.

MrsAck

 

[abbigaill2]

Hello Mrs. Ack
My husband sounds very much like yours. He was diagnosed Dec 21 2010 with " a very aggressive form". Onset was about mid July with both leg and arm wasting and weakness. They have given him 5 months according to the neurologist.
I save water bottles as they are lighter to lift and some days he uses a straw. I refill them with juices,milk, etc. leaving the lids on loosely so he can get them himself. Coffee cups are hard for him to lift so I put coffee in a lighter glass. For feeding in bed I got a little plastic stool and put anti slip drawer liner on it. I have low spaghetti bowls that seem to make it easier to feed himself as opposed to using a plate. We both want him to do what he can as long as he can. Some days are better then others.

 

[chriss]

On the subject of straws we had trouble finding ones that were nice and thick so he could drink soups eg chicken and corn. Don't know if this is available in your area but KFC (Kentucky Fried Chicken) has a new drink called I think Krushes and the straw is super thick. I just asked the store if I could have/buy some and they gave me a handful. Also when he is short of breath being able to drink quicker through a thicker straw is a help,

Thanks

Chris

 

[mrsack]

Thank you all for the great suggestions. We are managing "OK" at this point, and have made adaptations as necessary. As the saying goes "Change is the only constant"

 

[Lavender Lady]

I have arm onset and I have to say for me getting a bidet for toileting has been great for dignity and independence. It was suggested to help pull up my pants was to attach a hook to the wall and sew loops on pants that the hook can grab to pull on pants.

 

[abbas child]

Hi Mrs Ack. I am currently eating from a bowl using a spoon, and the bowl is on a paper towel on my lap. Soups which have thin broth can't reach my mouth due to arm and hand problems. I wonder if a plywood board covering your husband's wheelchair arms (a raised stage) could be made to set the bowl on, meaning a shorter distance for his arms to reach? The anti-slip drawer liner is a great idea for under a bowl or plate. In the "Tips Tricks and Gadgets" section I posted a source for a two handled plastic mug, which does come with a cover and spout as well as a cover which has a straw hole.

If your husband isn't using a wheelchair, then he could use an armchair for eating, which would actually give him more room for a bigger board.

Ann

 

[Marjorie R. Wilcox]

I hope to see straws made for hot drinks like coffee. I hear it helps prevent the choking if you use a straw too. I hear sometimes the liquids are easier to choke on than the solids sometimes.... We put up several handles on doorways and close to the tub and toilet. It helps to have folding chairs with arms... a toilet booster seat that makes the throne higher...Flushable wipes near the toilet. Hand sanitizers too, rather than standing at the sink.... A swivel seat to get in and out of the car, or at the table. Long handled spoons for eating...

 

[abbas child]

https://www.alsforums.com/forum/tips-tricks-gadgets/9648-catalogue-helpful-items-4.html Here is a two handled plastic mug. One cover has a spout and the other cover a hole for a straw.

I just lost a post here (I guess! Otherwise, it will appear and there will be repetition.)

I am in a wheelchair, but an armchair could also work... Could you place a plywood board across the arms and raise his meal/drink that way, making it a shorter path? I don't have a board on my arms, but do keep my meal in a bowl, with a paper towel under it and use a spoon for just about everything. Broth can't reach my mouth due to my arms shaking, but everything else is pretty easy. I use the mug above for pureed soup and drink it.

Ann

 

[abbigaill2]

On the subject of straws. I have not tried this yet but I was told to go to the hardware store and get clear plastic water line. It is thicker than straws. It can be cut to a comfortable length and sanitized for reuse. Thank you all for sharing the helpful hints here.