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Thread: CAN ANYONE HELP with Advice on MS

  1. #1

    CAN ANYONE HELP with Advice on MS

    Hi everyone. My mother has Primary Progressive Multiple Sclerosis. She was diagnosed 12 years ago and is 60 now. She has just gotten worse and worse over the years. About six months ago she stopped being able to get around the house with a walker so I moved home to help her get around and be her caregiver. Can anyone give me any advice on how I can help her. I have read about stem cell treatment and I know some is available. Does anyone know anything I can do to help her. It is very hard for me to just stay here and watch her fall apart. Thank you.

  2. #2
    Senior Member lynnifer's Avatar
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    Hi Brian:

    I moved your post to this forum where it will hopefully garnish some responses from people going through the same thing.

    Have you tried http://www.mult-sclerosis.org for information?

    Does your mother take any medication to slow the progression of MS? I wonder if Famipridine could help (will be on the market next year, hopefully). Has she been assessed by any kind of occupational or physio therapist? Is she using a wheelchair for mobility now?

    Jenn.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3

    thanks

    Hi Jenn,
    Thanks for moving my post to the best spot.
    My mom was taking medicine like some shots years ago but it didnt seem to do anything. I'm pretty sure that there is nothing that can really slow down Primary Progressive MS at this time. She takes lots of other medications like things for her bladder and other things but nothing to directly slow the MS. Well thanks for the MS link. Good luck.

  4. #4
    Senior Member lynnifer's Avatar
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    I found another link that may help. It's my understanding that the Multiple Sclerosis Society is quite helpful and supportive of people affected with MS.

    http://www.nationalmssociety.org/sit..._managingprog1
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    My mother also has PPMS. The immunomodulating drugs (Betaseron, Avonex, Rebif, Copaxone, Tysabri) have not been shown to benefit PPMS, although they do seem to work somewhat for those with RRMS (the most common type). If you mother has had PPMS for 12 years and is just now having more serious walking problems, she is actually doing pretty well. My mother was dx in 1982 and stopped being able to walk at all in 1992, and is now unable to do any transfers or personal care other than feed herself and use a computer.

    While there is no legitimate human stem cell therapy for MS, it is possible that therapy and other medications can help with management of her MS. Does she have a neurologist who specializes in MS? Has she had an evaluation at a good MS center? While we cannot slow the progression of the disease, there is a lot that can be done to maintain mobility and independence, minimize complications, and help maintain quality of life. 4-AP may be an option. With rapid progression sometimes medications such as Navontron are used, but this can be a very toxic drug and is rarely used for the slower progression of PPMS.

    The National MS Society can help. Their support groups, education programs, website, and other programs are excellent. Is she active in this organization? Are you? www.nmss.org

    (KLD)

  6. #6

    hi CSI-Nurse

    hi nurse, thanks for the response. I don't know what 4-AP is so if you could tell me what you meant by that it would help. Well the whole story with my mom is about 6 months ago she was still using a walker and then she fell and tore her rotaor cuff and was in a hospital bed for one month. After that she could not use a walker and her legs became very weak but good enough to help with transfers and somtimes take about 10 steps with a walker while supervised. She is gonna have surgery on her rotator cuff in about month. Her doctor is a guy named Dr. Cook in Newark New Jersey. I think he might be famous or something lol but im not sure. I think he is a neorologist and he speacilizes in MS. She is not active in any big MS organizations. I guess we should look into that. Also her mind is getting a lot worse. She has no short term memory at all. She wouldnt be able to tell me what she had for breakfast 30 minutes after she ate it. And she also has trouble doing simple things like working the remote to the TV and she cant concentrate on reading for a long time. She also cannot think quickly at all. She used to be very smart and love to read books but that is not possible now. Did that happen with your mom. She takes a lot of medication, maybe that could be effecting the mind some but i dont know. What can i do to help her mind. Thanks very much and good luck with your mom.

  7. #7
    Hi again nurse, I looked up 4-AP and it looks very promising. Do you know where i can purchase this drug. Thanks.

  8. #8
    Senior Member lynnifer's Avatar
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    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  9. #9
    Brian, do a search on our forums for 4-AP an you will get tons of information. You need a physician willing to prescribe it, and then find a compounding pharmacy that will make it for you. Many use College Pharmacy in Texas. There is a chance it may be FDA approved for use in MS within the next 2 years from Acorda studies.

    (KLD)

  10. #10
    Hi Brian L,
    Sorry to hear about your mom's PPMS and worsening symptoms. It would be nice if there was a magic bullet to cure everything but there isn't. At this time in research, PPMS is not reversable. Have you considered getting therapy with your mom to assist both of you in her changing health and the long term implications. A good minister or therapist will assist in the grieving process and will help both of you to enjoy the ability and time left without feelings of guilt over not being able to reverse the outcome. Acceptance of a situation goes a long way in quality of life. I have SPMS and use as my driving force in life now to enjoy what I can while I can and not to sweat the small stuff. I reach for help in coping and support and offer what I can as I can to others to help improve their life even if all that is is my ability as a good listener or my prayers. Quality of life is important, I believe it to be more important than even a cure most time. Best of luck to you and your mom as you transition through this phase of her disease.

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