Scary Stuff

[pameladlloyd]

I visited a friend yesterday who was recently diagnosed with Multiple Sclerosis. It's been less than a year since she woke up with pins and needles in her feet. Since then, the condition has progressed rapidly, leaving her legs numb, so that she can't safely walk on her own, but also affecting her sight, so that she has only a narrow, off-center field of doubled vision. She was a reader who enjoyed science fiction and fantasy; now, she cannot read her favorite authors. She has a few audio books, including Neil Gaiman's Fragile Things. She loves listening to it, especially since Neil Gaiman is the reader, but she misses seeing the written page. I expect to be visiting the library in the next few days, so I'll do my best to find out what's available through the library.

This illness is still very new for her, so she hasn't yet gotten fully hooked into the support systems (I hope we have them in our community) for people with MS and blindness. Her husband is struggling to care for her and and all the other things that go with having a family, while still working to make a living; he's self-employed, so if he doesn't work, he doesn't earn. They have no insurance and many of the treatments are incredibly expensive. He earns enough that they aren't eligible for the full range of Medicaid, but the expenses are so high in comparison to their income that they are getting at least a little bit of help, which is good.

Now, on top of her illness, their oldest son just announced that he has joined the marines. My friend and her husband are not as liberal as I am and I'm not certain of their position on the war, but she is terrified of losing her son, is very unhappy with his decision, and doesn't even know how to talk to him about this.

It was a difficult visit for me. I spent most of it just listening, and some of it reading a few of the many pamphlets the MS society has sent, and all of it feeling terribly lucky and terribly inadequate to help in any real way.

Comments

[mmerriam.livejournal.com]

One thing you might be able to help with: If her vision has progressed into legal blindness, or frankly even Very Low vision, what State Department assists the blind should be able to offer her some services, including access the Library of Congress Reading Library. Their audio books are usually about three years behind, but they have a much broader range of titles through their program than typical audio book publishers. She needs to see an ophthalmologist to find out if she qualifies for state services for the blind.

[pdlloyd.livejournal.com]

Thank you. There is a really big learning curve here and it's clear to me that she and her husband are feeling overwhelmed.

I'll pass your comments along and check out the State Department's website.

BTW, she has a Mac laptop, but hasn't been able to get information on how to set it up to be accessible; the society for the blind that she contacted (I'm not really sure which group it was) only offered solutions for PCs. Do you know if she needs special software? My stepson thinks the Mac may have built-in features that would allow her to browse the Internet.

[eneit.livejournal.com]

do you have a community health service in your area? (I'm not sure what the States medical services are like, but over here comunity health covers baby health nurses, rehab, dental clinics etc) It was our local baby health nurse who finally sorted me into the services I'm now getting, I simply had no idea the home help and respite things were on available. Maybe there's something like that over there?

[pdlloyd.livejournal.com]

We don't have anything as comprehensive as you've got, and much of it requires months of negotiation (as I learned several years ago when a friend with Alzheimer's was living with me), if you don't have the resources to pay for it out of pocket.

However, I've just discovered that the public library has a lovely page with links to disability resources in our community. The few web searchers I've done are turning up some possible agencies, but which of these she'll be eligible for, I'm not sure. I'll have to talk to my friend and her husband, to make sure who they've already contacted and whether they're willing to let me make calls for them.

[crinklequirk.livejournal.com]

If she and her husband are as overwhelmed as both I suspect and you said they might be, then they'll probably welcome any assistance - provided you can get past the initial "well, we wouldn't want to impose" or "we're not sure we want others so deeply into our private matters" bits.

They, are, indeed, lucky to have you if you are willing to help see them through this. :)

(Hugs) for you, though: it can be very hard to help friends with things like this.

[pdlloyd.livejournal.com]

I'll do what I can, but I think they need support far beyond what I can offer. I feel very lucky to have so many supportive friends online. Thank you.

[asakiyume.livejournal.com]

I'm so sorry to hear this. I know there are all levels of MS, but--and I hope this isn't offering false hope or being too foolishly optimistic--sometimes there can be some pretty wonderful remissions and reversals. I have a friend with MS; I'll ask her if there are any online groups that she particularly likes or has found useful.

That has to be very, very hard about her son's decision. Possibly he's trying to be responsible and become independent, so as to not be a burden, not to mention wanting to do something heroic and be of service, but yes, from a parent's perspective, how very scary. I truly pray we can wind down our deadly overseas entanglements with despatch...

I'm glad she has you as a friend...

[pdlloyd.livejournal.com]

Thank you.