Old 02-13-2019, 02:42 PM #1 (permalink)
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Default Where to Go From Here

Hello. My husband was diagnosed ALS May 24, 2018 at age 43. It all began in April 2017 when he began having difficulty clipping his nails, left hand onset first. From there it was over a year of testing, specialist, etc, which is the only normal thing I guess about this disease; difficult to diagnosis but once you have that diagnosis the symptoms are definitely apparent.

At the May diagnosis he had no use of left hand/arm, balance issues and only mild speech slurring. Fast forward - quite literally it feels like a fast forward - 9 months later to a very different picture: speech is considerably affected, he is in a motorized chair only his right hand having minimal strength, has PBA, breathing at night starting to sound labored and he has lost 40 pounds.

We have done all the obvious things we could think of to adjust the house to challenges. Grab bars installed, shoes without laces, altered pants with Velcro, chair riser for the motorized chair, shower chair, toilet chair, portable urinal and a stair lift should he feel energetic enough to want to visit with family upstairs.

Now we seem to be entering the realm of I don't know what to do now. Anyone who has any suggestions or advice on the following I would be grateful.
1. He says his hand/arm strength is declining and feeding himself is becoming tiring. He said swallowing is not an issue but I'm leaning toward it is time for a feeding tube. Has anyone else inserted feeding tube when swallowing not an issue?
2. Does anyone recommend a cup/straw that is lightweight?
3. I'm now in charge of his grooming. Recommendations for razor, or other grooming tools welcome.
4. Recommendations for anything I haven't thought of yet but should be prepared for are also welcome.

I must admit I was shown this forum a month ago and only just joined after reading some posts these past few weeks. It is difficult to put things out there so plainly but if there is a setting where it would be understood I feel like this it.

I appreciate any suggestions. Best wishes to all on the journey.
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Old 02-13-2019, 04:02 PM #2 (permalink)
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Default Re: Where to Go From Here

Sorry to welcome you here, Tulip. We will help however we can.

The long thick straws such as you find on adaptive tech sites reduce the amount of bending and lifting required and can be used for soup and smoothies as well as regular drinks. Acrylic glasses and plastic cups are the lightest weight.

There are lightweight two-handled mugs for coffee if he can lift that much. And "sporks" to help the food stay on the fork, or alternatively using an oyster fork may be easier to lift/use through it will take longer. If you end up feeding him, the smaller oyster fork can be less work for him to get his tongue around. Similarly, there are child-sized spoons if he can still balance food in one.

As to your feeding tube question, if he can get enough nutrition and hydration through any combination of his and your efforts, and has no swallowing/choking issues, then a tube is not needed as yet. If not...So this brings us to, did he have those 40 lb to lose? Is he gaining any back? Maintaining weight is important. What's his height/weight now?

Is he on Nuedexta for the PBA?

Is he getting BiPAP for the labored breathing? That should definitely happen before any feeding tube procedure is contemplated because both breathing difficulty and going through a radiology procedure sap energy. PALS seem to burn more energy for the activity they do than other people, and energy deficits can speed up progression. That's why the right mobility device at the right time is important, too. You don't mention a wheelchair?

We had an electric razor thread recently. Some are more for guy-sized hands and some are more like women's razors with a thin stem. It's about what you can use safely and comfortably for him.

I understand it's hard to dive into posting this stuff. You're doing great.

Best,
Laurie
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Old 02-13-2019, 06:42 PM #3 (permalink)
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Default Re: Where to Go From Here

So sorry to have you here Tulip, but welcome! You will find lots of help here.

I found lots of help from my OT. She has so many suggestions I can't list them all.
Foam tubing to put on tools and utensils (like make-up, pens, razors for me) has helped.
An Electric toothbrush for use with poor hand strength.
A wrist splint to support my weak hand during eating, computer, dressing, etc.
Zipper pull tool.
Lots of plastic tublers with a lid for drinks (i.e. Tervis Tumblers). The large straws as mentioned fit in these cups. Lids to prevent spills with little sttrength.
Nutritional drinks like Boost several times a day to help with weight loss.

Just a quick list...keep us informed on how these items help. People have so many helpful suggestions here.

That's all...hands worn out.

Cathy
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Old 02-13-2019, 06:47 PM #4 (permalink)
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Default Re: Where to Go From Here

Thanks Tulip and Laurie for sharing. I'm still using both hands but it helps me to be able to see my future and think about how to prepare for it.
James
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Old 02-13-2019, 07:08 PM #5 (permalink)
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Default Re: Where to Go From Here

Sorry to have to welcome you Tulip. In addition to all the other suggestions noted, check out adaptive nail clippers. They are easy to use provided he still has some hand function.

Iíve also heard good things about fleximug and fleximug straw.

I also use an electric toothbrush.

I have rubberized handles that go around my drinking glasses (an example is pictured below).

Once hand function goes completely, itís a whole new ballgame.
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Old 02-13-2019, 08:08 PM #6 (permalink)
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Default Re: Where to Go From Here

Tulip,

We're about 40 minutes from each other. I love in DB Shores. Do you go to clinic? Which one? Have you and PALS been to ALSA support meetings in Holly Hill?

My suggestions would be to utilize a Vitamix and get some good-quality calories into him to maintain weight. It would help to know his height and weight now. You can blend any food in a Vitamix and add things like coconut oil, avocados, and Greek Yogurt to make it nutrient dense.

Many PALS get a feeding tube when their breathing starts to drop. You don't have to use it all the time but it's there for added calories and hydration/meds and he'll get used to it before it is 100% necessary. Some wait too long and are very weak so they can't gain back the weight.

Does he have his power wheelchair yet?

I know.....lots of questions. We will all help as best we can.
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Old Today, 08:11 AM #7 (permalink)
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Default Re: Where to Go From Here

Hi Tulip, and welcome. Posting here the first time is tough, but now that you've broken the ice it will get easier. This site and the people on it saved me on a regular basis.

My husband had the feeding tube put in almost a year before he started using it regularly. We did it based on his breathing deteriorating (any surgery is safer the better you PALS breathing is). Although it seemed early, I was able to keep nutrition and meds going into him when he was so tired he slept through meals. You can also use the tube to feed him calorie/nutrient dense foods that taste bad to him. We found the tube relatively easy to deal with, and it was nice to be able to transition to using it without the additional trauma of the surgery at the same time.

If your husband is having no trouble chewing or swallowing, it may be time to start feeding him. I think I dreaded that most of all because of the time it took, but I soon got into a routine of a bite for him, a bite for me. The feeding tube allows a PALS to eat for pleasure and get the rest of what they need without as much exertion.

Becky
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Old Today, 08:48 AM #8 (permalink)
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Default Re: Where to Go From Here

I'm sorry you find yourself here but welcome!

If he is losing weight it's time for a feeding tube!! I got mine early on because swallowing pills was hard as was drinking thin liquids, even though I could eat most things. In the beginning I used it only for meds and hydration. It was very convenient and so easy maintanence wise. Now I supplement with it because otherwise my weight drops. I still eat by mouth, but also take formula 3x day to keep weight stable. I really recommend getting the tube early, and if your husband is losing that much weight I wouldn't even call it early. My neuro stresses the importance of keeping weight up. The strain on the body when underweight speeds progression in ALS.

Do you have options for home help through federal, state or insurance programs where you live? It's been a huge weight off my husband to get PCA (personal care attendent) hours for me. There is someone who showers me, does the grooming stuff, helps with meds, and cleans up around the house. It is paid for by the state here so we have no share of cost for the help.
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