Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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tam444 10/08/2014

I am home from a week in the hospital in ICU where I was sent after Mestinon made me toxic and my breathing dramatically worsened. After IVIG and prednisone, I'm still very weak, but breathing better, and I'm so thankful for that.

My neuro wants me to get a home health evaluation, I guess to see if there's anything that can be done in the home to assist. Other than having a chair in the shower, I can't think of anything that would help. I'm also having trouble locating the provider who offers this service. When I called the number my neuro gave me, they said they only provide that for those on Medicare.

Does anyone have any experience with this type of home health evaluation? Do you think it would be useful? What kind of group provides that service?

Thanks as always for your awesome input!

Tamara

flutebell 10/08/2014

I went to a MG support meeting last month and a occupational therapist was the guest. She talked about the ways she could help someone in their home situation. She talked about energy conservation - something that is probably important for all of us, but especially someone who has just come home from a crisis.

She talked about reaching and dressing devices to save from bending a lot. She mentioned rearranging cupboards to have everything close to you when prepping meals. She described how even getting up from bed uses core muscles that tire from frequent use.

Here in Canada we have local Continuing Care Access Centres which can send an OT, visiting nurse or social worker who can do this kind of assessment. Maybe your area has some kind of hotline you can call to find a provider.

Good luck with your recovery. Sending hugs your way.
Flutebell

txkiki53 10/08/2014

See if your insurance has an advocate that can assist you with finding the right place/information.
Annette

tam444 10/08/2014

Thanks Flutebell and Annette.......I did as you suggested Annette and called the insurance company. They were able to direct me to the right home health care service who will send a nurse out to do an evaluation. I'm hoping it will be helpful.

GreenMarie 10/08/2014

I used to occasionally provide home evaluations in concert with occupational therapy for patients with COPD. There were often things that were not considered by family for someone with problems with breathing including distance to bathroom, positioning chairs along the way to rest on, the problem with stairs, standing vs sitting while working in the kitchen, where supplies are located so less effort is expended such as low shelves vs higher ones, problems with showering as you mentioned, access to clothes and a place to sit while dressing. There are many aspects to consider.
Not sure if you will be on oxygen or not but if so that brings up a few more questions.

First of all will insurance cover this cost for you? Sometimes hospitals have this type of service available through their occupational dept but insurance or private pay would be needed.
I think figure out if insurance will cover it first and also if they will cover any type of nursing care if needed.

Great about coming home! Slow and easy are the words to go by. Sometimes you are eager to get back in your routine and you need to let some things go if no one is there to help.

Good luck with all and so glad you are doing better! Hugs, Marie

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