Questions about progression

[zaro]

This is my first post on the ALS forum. My father was diagnosed with ALS this past August (August 5th to be exact). As with a lot of people, his symptoms started with muscle cramps and fasciculations sometime in May. When we were diagnosed, he already had some trouble walking. As the months continue, he gets significantly worse. In August, he could walk, although slowly and with a cane. September, we got him a walker, which quickly turned into a wheelchair. In October, he could no longer stand up on his own, nor lift his hands to his mouth. In November, he started using a ventilator nearly 24/7. He can't move his body at all. He can talk, but his voice is low and very weak. He needs 24 hour care because he needs to have his body moved several times throughout the night. We are trying to figure out home aid and we still don't have Mediaid and it's scary how much everything is piling on.

With the rate this disease is moving, we barely have enough time to catch up to it. I don't understand what to expect next. How much worse can this get? What should we be prepared for? I know that no one can predict the progression of this disease, and it might stop here, but what if it doesn't?

All the equipment takes so long to get, we still haven't received the electric wheelchair he was fitted for, although we have one that was given on loan. I want to be prepared and know that at least we have the right equipment he might need in the future. He also hates going to see his doctors, everything makes him upset and the thought of getting more bad news is terrifying.

Right now, we're trying to find some sort of air mattress/pad that can go on his side of the bed that allows for some movement at night. He refuses to get a hospital bed so we're trying to figure out other alternatives. Are there any mattresses or pads that are recommended? I looked online but there are so many, it's hard to figure out what will work best?

Thank you all for your help. I started reading this forum as soon as he was diagnosed and it has been incredibly helpful to hear from other CALS and PALS.

 

[brooksea]

zaro, I'm so very sorry about your father. I hate that anyone would have to go through this.

Different equipment works for different people. What might work for some, as in an alternating air mattress, may not satisfy or help your father. Sometimes it's trial and error. He may need triangular bolsters to prop him up when he sleeps, if he will not use a hospital bed.

He also hates going to see his doctors, everything makes him upset and the thought of getting more bad news is terrifying.

Do you think he may have Emotional Lability or even FTD? You might want to look into that.

We are trying to figure out home aid and we still don't have Mediaid and it's scary how much everything is piling on.

Do you mean Medicare or Medicaid? Does he have any health insurance at all? They should provide Hospice and it sounds like he (y'all) need it.

I'm sure others will have more advice...

 

[momap53]

Check with Hospice in your area. You'll need to ask his physician to make the referral.

 

[tmasters]

I'm sorry you have to be here and that the progression seems to be fast.

Regarding the bed, have you considered an adjustable bed? I have one that allows my head and legs to be moved independently so in some ways it's like a hospital bed but doesn't have the "stigma" of a hospital bed that may be objectionable to your father.

I have a memory foam mattress. Some here have a ROHO or alternating air pressure mattress. Check with your local ALSA chapter for a loaner.

But I lie on my back and don't need to move all night. The key is getting him comfortable.

-Tom

 

[zaro]

Thank you for the suggestions. In response to brooksea, I checked regarding the symptoms for FTD and Emotional Lability and it's really hard to tell. In some cases it fits, he can get upset easily and he has retreated from a lot of the things he used to enjoy. For ex, he doesn't like watching tv anymore and reading books, he prefers the apt to be extremely quiet, and often complains when my mom talks on the phone with people. I can't say he's depressed either because he has an interest in other things but most of it is focused on day to day activities. He wants to be better. He tells me all the time how much he wants to be better. He's fighting the disease with all of his energy. Does that mean he has FTD? It's hard to tell for me since the disease has had such a huge effect on him, but part of it is because the change has been so rapid and he's always been so strong, that he doesn't know how to wrap his head around all of it.

As for health insurance, he does have it and it will be valid for another 11 months. We're applying for Mediaid right now but it's a complicated process and i'm not sure how long it will take. Can hospice care be provided at home? I don't know if I can bring it up to him directly? I just don't know how.

In response to tmasters, is there a certain adjustable bed you recommend? We will definitely look into this option.



Thank you all again for your advice and for listening.

 

[mommagoose]

Hi, I understand my sister progressed quickly. Contact Hospice they are so helpful plus can help get beds and equipment.

 

[10starr]

Yes I agree about Hospice. They will help you through this process and he will benefit from their services. Hospice nurses are wonderful and will help ease your mind about the unknowns.

 

[zaro]

Thank you, I will give them a call.

 

[druithleigh]

I am so sorry to hear about your father's rapid progression, my mother progressed just as fast (fully functional July to hospice care and incapacitated in December)I agree with momap53, it's time to get a Hospice referral. If you are having issues with medicare/medicade, contact the Social Security Administration and make an appointment to have him out on disability and they will enroll him at that time. I'm not sure about medicade but I know that medicare pays for in home health care and hospice.

 

[Katie C]

If as you say he's actively fighting, and compliant with instructions, FTD wouldn't be my first thought... just natural anger and depression at his situation. I'd still bring it up with his doc and see if maybe some anti despressive meds would help... or a change in prescription or dosage if he's already taking something.

 

[lovedbygoldens]

As for health insurance, he does have it and it will be valid for another 11 months. We're applying for Mediaid right now but it's a complicated process and i'm not sure how long it will take. Can hospice care be provided at home? I don't know if I can bring it up to him directly? I just don't know how.

QUOTE]

ALS diagnosis moves him through all of the Medicare stoplights and time requirements. He would also qualify immediately for disability, if he is severe enough he can't work. I would work closely with your ALSA coordinator, they can help traverse the paperwork of the system and then Hospice would be covered at 100%. At least this has been our experience with my mom.