Mother has MS and I need help!

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Georgia B
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/2/2007 5:54 PM (GMT -7)   
Hi,
My mother was diagnosed with MS about 4 years ago, and we were not surprised with this diagnosis as she had many symptoms for a long time. She also has Addisons disease which she has had for over 25 years. My mother is on Copaxone for the MS and other meds for the Addisons Disease. She up until two years ago had health insurance and then she had to drop it because she no longer could afford it.

I am hoping someone on here can help guide me or at least point me to the right direction to help her.

What I am most concerned about is her obvious lack of health insurance and how it affects her ability to treat/diagnose problems with her MS. Is there help for patients with MS to get medical treatment? I also was wondering how to navigate the road to disability for her. She is single and living with a gentleman, she works full time right now but I can see obvious decline in her abilities in the last year and I worry how long she can keep this up. I would like to explore the option of disability for her but her boyfriend is not in a place financially to take care of her until she gets her first check (and I know it might take over a year to get this ). Has anyone else been down this path? What can she do to pay her basic bills until she gets on disability? Also does anyone know if she has any recourse with her employment not accommodating her rapidly diminishing capabilities. For example, she works in a retail store in the back office but occasionally her boss will want her to wait on customers on the floor, this has become very difficult for her because of balance and walking problems. Her boss is not a very understanding man and I think she would have to have hard proof for him to change his ways.

On another topic altogether, is she is has had two episodes this last week with her hand going completely numb for about 10 minutes making it impossible for her to use it, is this something that can happen with MS? It is only her hand and lower arm, not other weakness in other limbs or face.

I apologize for putting so much on my first post, but I truly need help. I have found her medication subsidy programs but I really think she needs something more now, I wish I was in a place to take of her completely but I cannot. Thank you for reading this long ramble.
Georgia

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 12/3/2007 1:31 AM (GMT -7)   
Georgia,
 
I wish I had some advice for you, but I don't.  I'm also in Canada so things work a bit differently... BUT
 
I wanted to say, what a great daughter you are!!!  I was so moved reading your message.  You are very involved in your mother's wellbeing and that is so admirable.  Your mother is very lucky to have you and I'm sure she knows this.
 
Welcome to the forum and I'm sure others will be able to point you in the right direction that have more experience with these things.
 
Best to you,
Shar
Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/3/2007 4:34 AM (GMT -7)   
Georgia B said...
Hi,
My mother was diagnosed with MS about 4 years ago, and we were not surprised with this diagnosis as she had many symptoms for a long time. She also has Addisons disease which she has had for over 25 years. My mother is on Copaxone for the MS and other meds for the Addisons Disease. She up until two years ago had health insurance and then she had to drop it because she no longer could afford it.

I am hoping someone on here can help guide me or at least point me to the right direction to help her.

What I am most concerned about is her obvious lack of health insurance and how it affects her ability to treat/diagnose problems with her MS. Is there help for patients with MS to get medical treatment? I also was wondering how to navigate the road to disability for her. She is single and living with a gentleman, she works full time right now but I can see obvious decline in her abilities in the last year and I worry how long she can keep this up. I would like to explore the option of disability for her but her boyfriend is not in a place financially to take care of her until she gets her first check (and I know it might take over a year to get this ). Has anyone else been down this path? What can she do to pay her basic bills until she gets on disability? Also does anyone know if she has any recourse with her employment not accommodating her rapidly diminishing capabilities. For example, she works in a retail store in the back office but occasionally her boss will want her to wait on customers on the floor, this has become very difficult for her because of balance and walking problems. Her boss is not a very understanding man and I think she would have to have hard proof for him to change his ways.

On another topic altogether, is she is has had two episodes this last week with her hand going completely numb for about 10 minutes making it impossible for her to use it, is this something that can happen with MS? It is only her hand and lower arm, not other weakness in other limbs or face.

I apologize for putting so much on my first post, but I truly need help. I have found her medication subsidy programs but I really think she needs something more now, I wish I was in a place to take of her completely but I cannot. Thank you for reading this long ramble.
Georgia
Here are some thoughts, not necessarily in any order of importance:
 
1) All of the companies that produce the MS-related meds (Avonex, Betaseron, Rebif, Copaxone) have programs available for people who have no or limited health insurance, that can make it possible for them to get the drugs.  Your mother should start with the Copaxone folks (since she was on that originally) and see if something can't be worked out for her.
 
2) Montel Williams (the talk show host) has a program he sponsors that supposedly helps people get medications who otherwise can't afford them. I'm sorry -- I don't have a link for you, but if you google Montel Williams you should be able to find it.
 
3) Presumably she talked with her doctor when she was no longer able to afford health insurance? Some (but not all) doctors are willing to work with patients when there are clear medical issues that need addressing, but they can't afford to pay for it.
 
4) You said "I have found her medication subsidy programs".  So are those indeed paying for her drugs, or are you needing something more along those llines?
 
5) As for disability -- it does indeed take time, a LONG time sometimes, to get on disability. And even though she has obvious medical issues (Addisons and MS) there is no guarantee that the social security agency will consider her "sufficiently unable to work" to even be eligible. Presumably she has worked enough years and paid into the system to even begin the process of applying (10 years)? She'd need to have support of her doctor(s) who would also have to fill out forms and write letters to the social security administration on her behalf; is she getting any sort of medical support right now?
 
6) It sounds like she is low income. You could start with programs that many states offer to subsidize low-income workers.  She might be eligible for things like food stamps or medicaid or other services.  Most counties have an office that deals with that. Sometimes they'll be described as "senior citizen services" but they'll also work with people with disabilities and illness.
 
7) As for her employment issues: If the store she works for is small and/or family -owned, there's not much recourse. But if it is part of a larger chain, then they would be required to abide by the Americans with Disabilities Act.  But your mother would need to do some careful reading about how to impose that upon them -- there is a lot she has to do, before she can require the store management to provide "reasonable accommodation" to her.  Again, do a google search for Americans with Disabilities Act and you'll find all sorts of resources about how to use that.
 
8) You talk about her hand (in the singular) going numb.  Yes, that can happen with MS...but also with other things.  One that comes immediately to mind is stroke -- Addisons can cause all sorts of vascular problems as well, and she should be checked to be certain she's not having small strokes that could cause her problems as well. 
 
9) You're a very loving and supportive daughter.  I'm sure you're feeling pretty overwhelmed right now.  I wish there was some magic wand you could wave to make all this work out for you! Take care.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 12/3/2007 7:54 AM (GMT -7)   

Hey Georgia,

You have gotten some excellent advice.  I hope you are taking care of you.  This can be a long haul and you need to take care of yourself so you can care for your mother.  Welcome to the board and I hope you find the support and information you are looking for.  You are quite and inspiration.  Thanks for posting.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 

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