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Help Dealing With MS

My sister has had multiple sclerosis for at least 12 years or better. And has been bedridden in a hospital bed, still at home, for probably 10 of those years. She has vision problems, has migraine headaches all the time, scoliosis of the spine, and a multitude of health problems. The MS causes the vision problems. She no longer reads because of the extreme headaches.


One thing I got accomplished for her was getting her hooked up with a free audio library through the state of Missouri where she lives. She used to pay lots of money every month to get audio books to keep her occupied. And this program is entirely free postage and all. So, if you know someone bedridden who likes to read check into this. A library near her that I called advised me of this library.

So now I need to know... she does the neurotin shots, and she is in that group that nothing seems to help her very much. It just keeps her from getting worse faster, which it seems to be a slow process. I am wondering has anybody found out anything of value to help patients of MS through their experience. My sis is miserable. She basically does phone ministry when she is able to help friends and neighbors that she knows of. And thank God her husband is a pharmacist and helps to keep on top of things. But I just wondering if there is any small little thing, suggestion, that might make a bright spot in my sister's days.

Until I found out about the free audio books she had really cut down on her reading as she used to be a voracious reader. That's one small bright spot. They have a housekeeper who also checks on her 5 mornings a week. I wonder if there is some type of activity that we haven't thought of. Any thoughts would be appreciated. Thanks for taking any time out to give words of reflection and advice.

Lori from Marion, AR

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September 20, 20060 found this helpful

Hi Lori

I have movement disorder, and had found lots of good info thru my support group. I was told about different drugs and treatments at my group, and our group leader also kept us inform of symposiums, conferences related to movement disorders which we can attend

You may want to look into support groups for her and her caregiver. You can find more info at or

Good luck

Anna. New York

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September 20, 20060 found this helpful

My dad has had MS for almost the last 30 years. One of the things that really keeps hime going is socializing. I don't know how your sister feels about this, but is she just sitting at home in bed everyday with only the housekeeper to talk to? Would a paid companion help? My mom takes my dad everywhere, out to eat, to my kids school programs and to the grocery store. Sometimes you have to get up and force yourself to get moving. It is not easy with the wheelchair and things, but most places are now so accessible! I bet a real visit, if you could spare it, would really help you to evaluate her needs!

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September 21, 20060 found this helpful

Check, an Alternative Doctor's website

that has been a JOY for our family to learn from, MS

being something he feels can be eliminated!! He sells some of the products he recommends and explains in a very compelling way just why he believes in them, AND he's been exposing the medical frauds right and left. God Bless and keep you, give you wisdom/knowledge/understanding/insight as you read about this issue.

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September 21, 20060 found this helpful

Lori; I'm smiling at this moment because you are taking this avenue to help your sister. Many people don't think this way and I think it's great when I see someone who does. You didn't happen to mention your sisters age. I've been signed up with an internet group called Chemo Angels for four years now. They Angel many who are in some area of cancer, chemo or radiation. You can check them out at: They assign two Angels for each patient and those Angels send weekly letters, cards and gifties to the patient. Granted, your sister has MS and not cancer but we also have side groups. Senior Angels, Missionary Angels and so forth. Check it out, they are incredible people. They base all conrtact on the positive and upbeat and no patient is ever expected to write back. The only thing is that your sister would need someone to do a monthly check in on the internet. This is the only way that the Angels know how she is doing or if they need to change something since the patient dosen't write back. If your sister is having a bad week or surgery date approching, the administration would send out a notice to the Special Assignment Angels and your sister would receive cards and gifties from all over the world. We have many International Angels also. Please check it out and see if they can help your sister. You will be so glad you did. Please contact me if you have any questions or want to chat. Amy

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September 21, 20060 found this helpful

before i give any ideas for entertainment i want to ask if your sister uses artificial sweetners. sucralose and aspertame have caused more nerve disorders that are misdiagnosed as MS than any other toxins ever. check out and for more info.

does your sister like to sing? karaoke machines are pretty cheap and you can get cd's at garage sales a lot of times. singing is good for the mind and soul as well as helping breath control. she doesn't have to sing well just enjoy it.

there are public radio stations that still do radio plays and stories and play the old time radio shows.

serious radio does this too but i think you can get the public radio on the computer for free. good luck

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September 26, 20060 found this helpful

Yes, Wendola I have read all of the feedback and nothing works for her. She is really getting too far gone ((:. Right now her extreme headaches which I don't know if they are from her neck bothering her or MS related is what would help her to get relief from. Since she is bed-bound and her short term memory loss has gotten so extreme I can't even hardly talk to her these days. I checked on massage therapy house calls yesterday for her, but its $110 an hour, so I don't know if they are going to go with that. Trigger point therapy might help her headaches. Please you guys with MS I pray you heed this warning, when my sis was first diagnosed with her MS she was an assistant manager at a drug store and took care of the gift line. She worked like 50 to 60 something hours a week, flew to gift shows, and never once slowed down. The doctor had advised her to quit possibly or just work part time and take it easy. She never listened and within 2 years she was in that bed and has been there every since. If only she had heeded his advice and taken it easy she might still be productive today. If anybody could learn anything out of this it would be to slow down and smell the roses, and listen to your MD's advice as she didn't. I thank everyone so much for taking their time out to write.

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