Can one predict which regions will progress faster?

[MupstateNY]

When I was diagnosed six weeks ago, the doctor said I had three body regions affected primarily: legs, arms and back. She said things around the head only a little bit, in comparison. Does this give me any probabilities regarding speed of progression of the various regions?

Which region is breathing? I assume speaking is part of "things around the head."

Are there statistics about percentage of PALS whose speech goes before hospice starts? Or about incontinence? Wheelchair bound? Unable to touchtype any more? I am guessing that almost everyone progresses to wheelchair but I really have no idea.

One reason I'm asking is, I can still use my sewing machine and scissors and pins. I wonder if it's safe to assume I will have a high likelihood of needing the adaptive slacks later on. If so, I want to get cracking with making some while I can. but I wonder what to do about skirts. I have to wear a skirt most of the time because it helps prevent a rash on the upper thighs. The air circulation is more helpful than medication.

 

[affected]

We all wish we could answer this so much.
The only predictable thing about ALS is how unpredictable it is.
There are some 'typical' progression patterns, but nothing to say you will follow any of them.

If you can sew, definitely start making adaptive clothing that you would like to wear later!
Search here and you might find some great suggestions on adaptations others have made (I can't sew for peanuts sadly).
Or search online for ideas and patterns - some things people have done here are so simple, especially involving velcro!

 

[lgelb]

Breathing is not just bulbar. It is also chest/abdomen, which can compensate for each other to an extent.

No, we cannot generate probabilities or statistics for much of this, but what we can say --if PALS start with the limbs , bulbar "catches up" to varying extents, affecting varying functions -- there is no set order with speech, breathing, eating.

Most PALS lose most or all speech and ability to eat before death. But my husband did not.

Most PALS experience some urgency at some point but most do not become incontinent.

It is common that you end up using a wheelchair and that your caregiver must use an electronic lift to transfer you, and that you need an electric hospital bed, and are unable to touch type with your hands. However, often you can still keyboard in your wheelchair using a head or tongue mouse, eye gaze, or a virtual (on-screen) keyboard ability switch near a muscle that you still control like your chin or face. A minority of PALS work and/or sleep in a recliner instead of a wheelchair; the positioning options are not the same.

You can Google options/patterns for adaptive skirts. Like pants, you will want to put snaps , velcro, or any other fasteners away from where your arms , torso, and legs rest, to avoid pressure injuries. You will also want a design that accommodates a female urinal and a lift sling.

Hospice is not a phase of the disease; it is a package of optional services that Medicare pays for if there is a doctor's order for it, where hospice gets paid a set monthly rate for providing all your ALS-related products and services (meaning major equipment should be purchased before entering hospice, or you will have to leave hospice/come back to get it).

Medicare continues to pay for blood pressure meds, for example, and other non-ALS conditions. However, if you get cancer or another condition where someone would normally offer curative treatment, patients on hospice are typically not eligible.

Since hospice agencies get paid at a monthly rate no matter what they do for you, many don't do that much. PALS are under no obligation to sign on with hospice, ever, and not all do. It is like any other option --when you and your doc agree that it's time to consider hospice, you shop around, see if your network includes an agency you like, and interview them about what they would provide. Still, they can renege with no consequence for them. You can then sign on or walk away. Some here get/got a lot out of hospice, and some not.

With dual eligibility and living in New York, your experience may be somewhat different. I remember reading that one PALS there was eligible for more aide hours than in most other situations I had heard about. However, she was flying solo. In some cases, Medicaid will pay a family member for providing your care. They may need to go through training.

Though hospice is typically ordered near the end of life, ALS is not always predictable, so some PALS end up on hospice more than six months, so long as they meet recertification criteria.

 

[Nikki J]

I think skirts are usually easy than slacks. My sister wore them exclusively for most of her illness. We have also had male PALS who chose “kilts” as easier. The best style of skirt my sister found was slightly below knee length when seated and not too full though definitely not pencil style either. The length was for modesty and the fullness was both comfortable and had enough material but not to much to deal with during transfers. ( she did not have a lift which is unusual but she was very petite)

 

[Bry2k200]

I'm not an expert by any definition, but my uncle (third one on my mother's side to develop ALS symptoms) was diagnosed 9 months ago and only his hands have been affected. Recently though, the back of his left leg started cramping. This is apparently what will be affected next. Hope that helps a little.

 

[MupstateNY]

Lots of eye-opening info here, thanks, all.

My mother had hospice services in her home, and the hospice philosophy was to increase the dosage of morphine drops as needed to keep her comfortable. That gave her a gentle, peaceful death.

Without hospice, can one still ease out of life with morphine drops? If so, how does one swing it? Maybe this is something to talk over with my primary?

I weigh 125 pounds currently and I'm about 5'2.5" tall. Will caregivers be able to pull elastic waist garment up and down for toilet? I read that this could work for smaller people. But I don't know if I qualify as a "smaller person."

I made several comfort wear skirts a few months ago that might work well. I cut a narrow strip of cloth and a wider, longer strip of cloth. The narrow one gets folded over at the top, with non-roll elastic inserted. The wide, long strip gets gathered and attached to the upper part (the "yoke"). The finished skirt is wide enough for comfort but not so big that it would lift up in the wind. Bathroom visits are easy with no underwear because I just lift up the skirt in back and sit down. The length is such that I can wear my support socks without exposing skin above the top band. Reason for no underwear: to prevent the rashes I'm prone to, and to help with healing after I've broken out. But I have no idea if this will still work if (when) I'm wheelchair-bound.

I found that wearing polyester or rayon pants for a few hours will make me break out. So I have now removed them from my chest of drawers and packed them away. I do best with 95% - 100% cotton. If I do wear underwear, it works best if the elastic is enclosed and they are "hi cut."

(I've had the rash problem for 5 years, but it got worse this past year.)

Now that it's winter, I wear men's long johns from Walmart -- 100% cotton, very soft -- under my skirts. I own two heavy cotton knit skirts with elastic waist (made with gores), and I alternate.

 

[affected]

Definitely you can do this at home. I'm in Australia and so it is a little different but pretty similar. We registered with palliative care and that meant that no investigation into his death would happen. Our doctor prescribed the medications for maintaining comfort.
I knew that Chris had begun actively dying 4 days before he did pass. I had incredible phone support from our palliative care nurses and they helped advise me how much to keep increasing the doses of meds. I was able to observe Chris and dose according to his needs.

I was always fully prepared that I would have no problem knowing I gave him the final doses and did not call for intervention. This made the process beautiful and the most peaceful of the whole time for both of us really. I played beautiful music, used candles and spent a lot of time just talking to him and doing face, hand and foot washes and massages until he passed.

You can also make adaptive clothing that helps with toileting. I'm a 100% cotton girl too. I react to many synthetics - I get it!

 

[MupstateNY]

Thanks, affected. My mother had a peaceful death too and that was gratifying. I was a sickly child and she was a single parent. She always took good care of me when I was sick. (3 types of measles, scarlet fever, whooping cough, mumps, chicken pox, TB, chronic strep throat and chronic boils. I was glad to be able to take a turn caring for her. (She had resisted that at first.) I gotta figure out how it works where I live.

Also I want to figure out what to do about skirts.

 

[affected]

I feel that your experience with your mother will really help you make your own decisions now. I'm so glad you could give her that gift of a peaceful death. I know it has helped me a lot knowing how it ended for my Chris.

Skirts should be fairly simple as you can make it so that you are not even fully sitting on the skirt, or like a wrap around design, or just a split at the back that velcros at the waist band. That is mostly for getting the skirt on and off, but for toileting a skirt is simply lifted up so you might just want to look at comfy skirt patterns with elastic waist and decide how much material and flaring you want?
I probably shouldn't even say all that as I am not a sewer at all.
My Chris just wore track pants in the cool weather and elastic waist shorts, or went commando. Pulling elastic waist clothes up and down with a hoyer was simple.

 

[MupstateNY]

"Pulling elastic waist clothes up and down with a hoyer was simple." So glad to hear it. Sounds like I can wear my existing skirts with elastic waist. I have four for warm weather and two for cold weather.