My friend's dilemma:

Miscellaneous and Personal Stuff I Must Share
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My friend S, a single parent who lives near Cape Canaveral, has within recent years contracted Multiple Sclerosis, and has a fairly severe form of this disease (secondary progressive, which means that when she has a flare-up and seems to get over it, it always leaves her with some permanent damage).

Within the three years she has known about the illness (they determined she actually had first major symptoms in 1991), she has lost the ability to walk long distances, and is unable to do much more than light housework and short errands. When she was no longer able to care for her son in the way she saw fit, she made arrangements for him to live at Mooseheart, a home in Illinois for children whose parents are unable to care for them. He comes home four times a year, and they are in contact weekly by phone.

Her son P is now 13 years old and wishes to move back home. He has been at Mooseheart for a year and a half. She feels torn; she wants her son with her but believes that he would receive better care at Mooseheart, plus he would have his college paid for if he stayed there long enough. Also, she is on a fixed income and would be unable to buy him extras or allow him to participate in sports because of transportation issues (she now sometimes becomes dizzy when she drives, and has to pull over).

She can’t really get by on disability. It costs half the amount for her health insurance and medicine (two of them are expensive and not covered by insurance at all). The other half goes to house payment, utilities, and some food. Other bills get paid on a rotating basis as she can.

She will get Medicare a year from now. At that time, she’ll have some relief, yet have to get a supplemental policy, as unless the law changes, Medicare doesn’t not pay for any drug treatment.

Does anyone have any suggestions for her? If she lived here in Minnesota, it seems that there would be all kinds of agencies that might help her, but I don’t know much about what Florida has. Does anyone know of national type agencies that might help? Any words of encouragement and/or comfort would also be appreciated.

Thank you!

-----:slight_smile:
—////\\

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Oh goodness, Spidey, I wish so much that I could help your friend. My heart goes out to her and her family. Perhaps somebody on the board knows of a place for children and their parents?

Grrrrrr…stories like this always break my heart & make me so damn angry that we can’t do better for our nation’s children.

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What tatertot said. :frowning: :mad:

I have a good friend who lives in FL. I’ll pass this on to her and see what I can find out.

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I sent her the link to this thread (and finally the correct link to the message board). She has never been a member of a message board, even though she’s been on-line for many years longer than I have.

We first met in the eighth grade, when she befriended a shy newcomer to the Chicago suburb of Harvey, Illinois. That was in September of 1967, which means we have known each other for thirty-three years. My family only lived in that town two years, so it has been a long distance relationship since that time.

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Thanks. I would love to hear about it. :smiley:

I am the one Spider Woman is talking about. Got up late (as usual, bc of MS) & got online. Took me a bit to get registered, but here I am.

I’ve had a number of suggestions. FL has not been helpful in anything, though.

ah ha-- I just got to the place where more info is listed. I’ll posted this & read those.

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Does she belong to a church or live near one?
If the child lived with her, would they qualify for AFDC? Is there a national MS organization (I used to work for Muscular Dystrophy, and one of the things that happened is that the national charity some times took over and helped with some specific things).

That’s all I can think of at the moment. Sorry.

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I guess this thread is also serving as an introductory thread for Shara; the S about whom this thread is written. Her post is right before yours. I think I will try doing a search on altavista, and other engines, and see if I can come up with anything.

I know there are a few posters who live in Florida, but my geography of that state is bad so I don’t know who lives close to Cape Canaveral. And it could be that many of those people are spending time with their families today, so I may bump this again tomorrow. Thanks to everyone who replied so far, from both Shara and I.

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{{{{Shara}}}} I have nothing to give, as far as information is concerned, but you have my encouragement and well wishes.

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Forgive my Shara, the answer seems simple to me. Get your son P back home. He needs you and you probably need him. Family belongs togther! If P were younger, I could understand, but at 13 he is old enough to know his mind and old enough to help out around the house. Adversity is a great teacher. Together, you can figure out how to overcome all the problems.

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Shara my heart goes out to you, and hopefully something will come of the search engines to aid your incredibly hard decision. I have two sons who are the absolute light of my life, and I can’t imagine not watching them grow up. I’m with ** bare, ** life will be hard, but it has to be harder not living together.

Here’s hoping someone from the Cape comes through with some more info.

Judy

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Welcome to the boards Shara. You are among lots of loving people here. I am confident that there will be many helpful suggestions to come.

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(((Shara)))
I only wish I could do more. Welcome to the boards. Best wishes from my heart to yours.

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Welcome aboard, Shara!

I telephoned my Floridian friend earlier this evening and informed her of your dilemma. I also e-mailed her a link to this thread. Unfortunately, she has computer and internet access at work only. Consequently, she will not be able to follow up until tomorrow. I will keep you posted.

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Thanks, Silver Fire, bare, Anti Pro, Zenster, and Nocturne, for your warm wishes and welcomes to Shara. Through my favorite search engine I found this, which may prove helpful to Shara if she and P decide that he should move back home. (I don’t know why I didn’t think of that earlier.) I haven’t had time to check many of the other ones, but that was off the first page, and there are thousands of pages. Hopefully there will be more possibly helpful links. I would imagine there are even scholarships for children whose parents have MS, and other mitigating and helpful services that could be found to help them cope.

Cajun Man, thank you for giving your friend the link, and for calling her. That was very kind.

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Hi Cahun Man,

Was your friend able to find out anything?

I clicked Spidey’s msg & emailed the lead on MS homecare. Waiting to hear from them.

& I am working on seeing how I can get my son home. We do need each other. But I can’t supervise him as I should & as I want to. I have to sleep a lot to be a halfways real person.

I think he can get an edge to a scholarship with my disability, his being adopted and biracial. But the FL grading scale is screwy. 94-100 = A. In many states, like IL where he is, it is 90-100 = A. So I’m concerned that his grades will not accurately reflect his ability.

I continue to look for leads. & right now we are happy bc he is in his 3rd week of vacation break here. He has to go back in a week, though.

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Hi Sarah!

I just e-mailed you the info. Please, let me know if you’ve received it.

I hope you and P have a very Happy New Year!

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Oops…that’s Hi Shara!

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a good place to start for advice is the national multiple sclerosis society. they appear to have three local chapters in florida. to get to contacts for the chapters from the above link, click on local resources on the main page, then enter your zip code or click on florida on the image map. they helped our family tremendously.

i was 12 or 13 myself when my mother’s MS really started to affect her quality of life and independence. i hope you can find a workable solution that will let your son come live with you. we’re with you in spirit.

i’ll contact my father and ask him if he has any suggestions, and forward them along.

-fh

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Cajun Man and I spoke last night, and he let me know you had responded to the thread (when lots of people are here at home, I don’t often get computer time so I didn’t know).

I think the grading system will be fine for Paul; he has always been a very smart boy. I remember how grown up he sounded answering the phone as far back as 1992 when I was in Illinois for my grandmother’s funeral. And he was just tiny then. And grades are not always the most important issue in being accepted to college anyway.

And thank you again, Cajun Man, for all your help. And thanks to you, hazel-rah [cool name!] also.

----:)/ x o x o x
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[QUOTE]
*Originally posted by hazel-rah *
**a good place to start for advice is the [url=http://www.nmss.org/]national multiple sclerosis society[/

I’ve been a member of the local MS chapter for several years. We cycle thru speakers giving out info. I have not known of anyone in this area who received help from MS other than info.

I did a cyber walk last year when they had the fund-raising walks for research. I raised about $2,000 for it. That was a good feeling. I know a lot of research is going on. Anxious await results. & a CURE. Even better symptom mgmt.

I can call the Orlando ofc next week, but the woman I’ve spoken with before only thanks for money, but has no programs I know of to help $$-wise.