Anyone at level 8 on the EDSS scale?

[green244]

I am curious if there are any folks on this forum at level 8 or 8.5 on the EDSS scale.

[kycmary]

I did not know they had scale on that test?

[agate]

I can't answer your question but here is the EDSS scale. It goes to 9.5 (10 is death).

va.gov/MS/Professionals/dia....

[green244 in reply to agate]

I'm well aware of the scale, but thx. I track my husband year by year. When you have PPMS there is no going backwards on the scale, only continuing progression. It's a very vague scale though and more useful in the early and middle stages. Once you get to level 8, it becomes very muddy. There are all kinds of supportive devices that keep one from being bedridden. Maybe years ago level 8.5's were in bed most of the day, but they certainly don't have to be now. Yet, the progression continues in other aspects of disability - edema, bowel/bladder issues, spasticity. PPMS feels like such a different disease. I've read that it is characterized by more spinal lesions vs brain lesions. My husband has no cognitive issues or vision problems which may be because he has few brain lesions (although, he never gets MRI's because, as he says, what is the point?) The spinal lesions, however, cause faster progression of motor issues. Two interesting films about Jason DaSilva (who says in the second film that he is at a Level 9) are When I Walk and When We Walk. He's so young and yet has no use of his arms or legs. Truthfully, I think he is really an 8.5, but at any rate, he seems very vibrant for an 8.5 because he is so young. The second film was released in 2019 and he's still alive now in 2024. I know someone with SPMS who is still walking short distances with a walker, but she has double vision and incontinence. She seems much less healthy than Jason. The scale is obviously too tilted towards mobility, making the levels seem ridiculous for life expectancy planning. That's why published literature very rarely talks about shorter life expectancy from MS. And, yet most sufferers of PPMS do live shorter lives than they would have without it. My husband's father lived to 93 and my husband seemed very similar to his father in terms of health until he was diagnosed at age 54. He was an avid skier, runner, mountain climber, etc. However, there is no way he is going to make it to 86 (which would be 7 years off his life expectancy). There is much doubt in my mind that he will even make it to 76 - a full 17 years less than his father. PPMS sufferers need honest data about average progression through the levels in order to plan for the next stage of disability. It's out there, but it's buried in academic papers, always with caveats that allow for hope (Ocrevus, etc.) My husband was and is determined to avoid a nursing home, and luckily, I made sure that we kept money aside to pay for many years of in home care (even though he was not thinking this way) and I went back to work at a higher-paying job than I was previously considering in order to replenish this. Without this advance planning, my life and/or his life would be much worse now than it is. I also kept one step ahead of home modifications.

[Greentime in reply to green244]

I had no idea about how the scale being tilted towards mobility seriously impacts people at the higher end of the scale. Like you said, your husband seems healthier than someone with a lower score. I can see how helpful it would be if average progression rates were available to you. You have been so smart and capable with your planning. I feel for you and your husband who was once so very active.

[starlight5]

There is the EDSS and the FSS Scale for MS. Links to both forms can be found here.

nationalmssociety.org/For-P....

[mrsmike9]

Are you being told that's your score? (I'm probably a 0.5.)

[falalalala]

Most days I'd say I'm about a 7.

[Jesmcd2 CommunityAmbassador]

Hi @green2 welcome 🙂 I don't think we really go by disability scale here. As we all have MS and it's all different for everyone and affects everyone differently.

Please feel free to ask any questions here about your patient, you're a wonderful caregiver for looking into it! 🤗💕🌠

[Sweetheartonvdayl in reply to Jesmcd2]

Ditto 🧡

[green244 in reply to Jesmcd2]

Just looking for someone going through similar problems. Most posters seem to be in the early stages and not relevant to what my husband is going through. I was looking to connect with other late stage MS'ers to see how they cope day to day and how they handle the problems that arise - everything from diapers vs catherterization to pressure sores to edema. Sometimes, even the doctors can't give answers. For example, is it better to elevate the feet longer each time or do it more often? Or, once you can no longer sit up, does this mean that you have to have a BM in a diaper or a bed pan and how do you manipulate a bed pan under a quadriplegic? As scared as my husband must be at this point, I'm even more terrified as I am not trained as a nurse and muddling my way through this.

[jackgaume]

I went from .5 in 2011 when I was first diagnosed, to 8 in 2017 when I had my last major exacerbation. Been at an 8 since then.

[Greentime in reply to jackgaume]

I feel for you, an 8 must be really tough.

[green244 in reply to jackgaume]

Thanks for responding. It's good to see that you are still on social media. Do your arms work? It's tough to be at an 8 for so long! My husband was only at a 6.5 in 2017, but now he is an 8. He still has some muscle strength in his quads, but only for quick bursts to assist with transfers. I cannot lift him and need a little help from him to move him from his scooter to the car seat (the seat comes out of the van and drops down). We are trying to avoid buying a new van with a lowered floor. Is that what you have or can you still transfer to a regular van?

[agate]

green244, I was citing the EDSS scale because others had been asking about it.

I'm probably at 6.0 or 6 .5 though I don't pay much attention to those scales. MS is just doing what it's been doing and will keep on doing, and you go from day to day, I guess.

However, I've known some people with very advanced MS and they solve their problems differently depending on their circumstances. Here are a few:

1 - A man with absolutely no voice, no ability to stand/walk, and extremely limited use of hands/arms--lived alone in a HUD apartment for 17+ years (until he died). Had a caregiver coming in daily but not on evenings/weekends, when he was pretty much on his own. He had a lift on his bed and a motorized wheelchair. He whizzed around town at all hours in that chair, wearing a bright orange vest so he could be more easily seen. I believe he wore incontinence aids like a leg bag.

2- A married woman living with her husband in a house who had osteoporosis as well as MS. She was so thin and frail that her husband easily lifted her in and out of the car or her wheelchair. I'm pretty sure she had a leg bag for urine.

3 - A man who ended up living with his parents though he had been married (then divorced). He had 3 caregivers coming in in shifts and his mother cooked his meals and handled some of the toileting issues. There are ways of managing the bowel and bladder problems, and there are techniques for lifting someone on and off a bedpan and for changing whatever needs to be changed. Catheters can be tricky but people do get pretty handy with them.

4 - A woman completely bedridden with MS but she was quite alert and able to talk. I helped her by going through her mail with her and helping her to pay her bills. I don't believe she had any family. She was living in a private room in an adult foster home where there were several other disabled adults living, as well as the woman who ran the home. That woman helped with personal care and if I remember right, she handled bedpans. She wasn't a nurse but probably had had a bit of instruction on how to do that. I worked in a hospital and nurses, orderlies, and nurses' aides were all quite efficient about sliding bedpans in and out from under a patient.

[green244]

Thanks for this - very helpful, especially the bit about the leg bags - sounds like a lot of people do go with Foley catheters. It would certainly make my husband’s life easier, but I worry about UTIs. Also, I note that there seems to be a lot of paid caregiving going on in one form or another. I don’t know how people afford it. In my area, full time care is over $200k a year. In NY, Jason says in home care is free if you are on Medicaid, but in most states that puts you in a nursing home that accepts Medicaid. And then there’s the issue of getting on Medicaid which is really not a good thing, especially for the surviving spouse.

[agate]

I've been on Medicaid all along, and in the two states I've lived in, there has been coverage for in-home care. Rules differ from one state to another, though. And in the state where I had it, it covered only up to 180 hours a month, which would not entitle a person to round-the-clock care, which some people need. In that state (WA) I never paid a cent for my in-home help except for an occasional very minimal co-pay. I don't think I ever paid more than $10/year total in those co-pays. There were problems with it: the paperwork can be daunting, and some helpers just don't work out well, but some are very good. A couple of the helpers I had remained friends after they moved on to other jobs or retired.

And the laws change with time. I'm talking about WA state as it was 15 years ago. It may have changed since then.

So yes, you're right, if you need full-time care, you probably will end up in a nursing home that accepts Medicaid, and those nursing homes aren't places you would choose to be, but I haven't yet known of a nursing home where I would choose to be.

All a person can do (as I see it) is try with all your might and main to stay out of nursing homes.