Hello there
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October 5, 2006 at 3:36 pm
Hi, I am Michelle. My husband’s grandmother has had GBS since November of last year. She can move her arms a little and has full control of her speech and eating. But that’s it. She is bed ridden and has to have 24/7 care.
She lives in SC and we live in TN. Her youngest son and his wife take care of her. She doesn’t seem to be getting much help from the medical profession or the state. She doesn’t receive physical or occupational therapy or home health care. The Dr doesn’t seem to know much about the disease. He told her she pretty much will never recover.
Her only income is Social Security. The family is doing all they can there. What other avenues could I possibly look into to help from here?
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October 5, 2006 at 4:14 pm
Michelle.
Try the website [B]needymeds.com[/B] it lists state/local/federal programs for help and also the websites for help with medication costs from the pharma companies. Here in Michigan we have programs for help at almost every level township/city/county/state, so also check out their individual websites. If you have any trouble or need any help email me [B]jerimyschilz at hotmail.com[/B], I had no insurance and no assistance when this all started for me 3 years ago so I can hopefully give you some help. Take care.
Jerimy
PS-They don’t allow links here so you will have to cut and paste the website and email addresses.
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October 5, 2006 at 11:44 pm
You might want to try contacting a social worker at your local hospital. I am a RN, and I always refer people to our local social workers for assistance.
If there is a senior service center or ombudsmen in your area, you can also contact them. They might be able to give you an idea of some options.
I also have a family member affected by GBS. My thoughts and prayers are with you.
Jennifer
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October 6, 2006 at 8:51 am
Michelle,
I’m sorry to hear about your husbands grandmother. Unfortunately the apathy her doctor seems to exhibit is relatively common, and so many of us have experienced the same thing. There is absolutely no reason why the doctor should have said that she would never recover, unless there is some other underlying disease or illness. I am curious about her care initially, during the onset of GBS. Was she treated with IVIg or plasmapharesis and was she ever given physical therapy. PT is so VERY important, even during the initial stages of the disease.
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October 6, 2006 at 10:48 am
I believe if my memory serves me, she did get some sort of introveneous treatment the would be done in the first stages. And yes she did recieve PT in the first few months after she was stable. But since spring, care has been slacking. She had a PEG tube and the site became infected after it was removed and she has had a lot of bowel trouble. So, she has had other problems, but nothing that should be keeping her from proceeding with recovery from GBS.
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October 6, 2006 at 1:24 pm
Michelle,
The frustrating thing about GBS, is that nothing really seems to have a definitive answer. Nobody can predict the rate of recovery or to what degree recovery will take place. There is a common saying on the forum, and that is GBS stands for ‘Getting Better Slowly”, however having said that, the patient does need PT all the way through i.e muscle atrophy is a big problem. There are GBS’ers who have come back to almost normal in a few months, and others who have taken years, regardless of the severity of the initial onset. What saddens me is that they have just sent her home, and she is probably of the mind set not that she will not recover.
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