Dot's thread

[Dot Nichols]

Hi. First question: I am a new member and don't know what the above icons are.....

My husband was diagnosed in WA, with ALS just before we were to leave for winter in Scottsdale, AZ. We made insurance changes so that he could get into an AZ clinic. We had one appointment with the director in early January and are now waiting for his April clinic appointment. Is that typical?

Meantime he chokes frequently throughout the day, more often at meals. Soft foods and thick soups help him not to bite the inside of his mouth and to swallow. We have a wheel chair, walker and recumbent trike which allow him to get around and so far, he transfers himself. One of his problems is getting in and out of bed and once he is in, he can't turn over. What can we do to help with that? Also, where can I get small white boards for him to write a word when I can't understand? I am very grateful for this option to get some help. I have wonderful friends, but they don't have a clue what we are dealing with. Thank you! Dot N

 

[ShiftKicker]

Hi Dot,

Welcome to the forum, though I am sorry you find yourself here. I have moved your post as it deserves its own thread to get the answers you need. People will weigh in with experience soon.

~F

 

[rmt]

Sorry to welcome you here. But I'm glad you found this forum. The people here are very knowledgeable and so supportive!

To should be able to find a small white board on Amazon or at a drugstore or Walmart or Target, etc. My husband can't speak anymore and we have small white boards in every room and in the car. They are a cheap and easy communication device as long as writing is possible.

 

[Nikki J]

Hi three months between appointments seems pretty standard at clinic. Is the choking new since the visit? If not what was discussed? You can do a lot with texture but was a feeding tube discussed? If this is new and or not discussed or a plan in place call. My clinic at least has the three month appointment but expects us to call if something significant happens in the meantime.

if he has arm strength a bed cane might help with turning but maybe it is time for a hospital bed. Do you have contact information for the clinic ot and pt? They should be available to help with these things too

 

[lgelb]

Hi, Dot, the icons when you type are just to help you format or add images to your post. You don't need to worry about them.

Now that you have been there, the clinic can write orders for things you need in between appointments, so I would stay in touch with them. If he is choking at other times besides meals, I would ask about a BiPAP to support his breathing, since if he does not have enough power behind breathing in, the throat can close up, basically leading to choking.

And it is not too early to discuss a feeding tube with the clinic since obviously his swallowing has been affected. Once the tube is in place, you can use it or not, but having it in provides more options. Using high-calorie smoothie ingredients like eggs, nut butters, and non-dairy milk such as oat milk (if dairy is a problem) helps keep his weight up, which is a good thing unless he is extremely overweight. The BMI "sweet spot" is about 31. You will want to stay away from skins, seeds, kernels and leafy foods.

As Nikki notes, a bed cane or trapeze (that can dangle from above or be attached to the bed frame on the side) can help with turning, but ultimately as he loses arm strength, he will need to sleep on his back (an easier position for the BiPAP), or some people use special mattresses that sort of move throughout the night.

If he has problems getting in and out of bed, again, a handle or trapeze may work for a while, but you may want to start thinking about a Hoyer-style lift, assuming he is bigger than you. Often the local ALSA chapter will have a loaner.

Because clinics do have long lead times, I would make sure you have an appointment with the WA clinic you are using when you will be returning.

Ask us anything, any time.

Best,
Laurie

 

[old dog]

To get in bed, I have a small two-step platform with a rail on the outside edge beside my bed. I also have a home-made trapeze attached to the ceiling over my bed. I have not transitioned from PLS to ALS yet and have fairly good arm strength. These two devices enable me to turn in bed and sit up and then stand to get myself out of bed.

 

[Dot Nichols]

Thanks for the replies and advice. We do have a stomach port consult coming up. Swallowing is more of a problem every day, but he minimized it with the clinic director. He has lost 10 lbs so I think they are onto it.

I like the idea of a small stairway or step stool to help get in bed. Also, I think our old recliner would be great for him, as his left arm goes numb when he turns over, so he wakes up with a stiff neck...has anyone found that works?
Since we live three hours north of Seattle and have a little place here, I wonder if we could fly back here for the clinic dates, as long as he can make the 3 hour flight. We'll see....

So much change for him to deal with.....

 

[Dot Nichols]

The Clinic had a cancelation so we got in last week. It was very helpful and a supportive experience. It is followed by several tests, so we'll be busy. Thanks!