HOME AGAIN ... . . but with mixed blessings

I came home from Silver Stream Rehab on Saturday, October 19, 2014.  At first, all seemed to go well.  Transferred into and out of the SUV with the wheelchair and used the wheelchair ramp for the first time.  Then on Sunday morning, I fell trying to make it to my wheelchair from my bed; had to call 911 for them to get me off the floor and into the wheelchair.

Since then, my leg muscles have gotten weaker and weaker, now to the point that any transfers are impossible.  As a result, all my time is spent bedridden.  The home health agency has completely dropped the ball providing me with NO physical and occupational therapy during the past two weeks.  Nurses have come out every other day to change my left leg cellulitis bandages.  The home health agency has decided to "drop" me because they feel that I am "unsafe" in my own home.  I am appealing that decision.

In the meantime, I am asking my primary care physician about sending me to Duke or Chapel Hill for  intensive muscular dystrophy clinic  intervention.

Each morning from 10 to 12 am, I have CNAs come to my house at my expense, to help with toiletry, bathing and dressing, as well as minor chores such as doing laundry.

I am stuck between the proverbial "rock and a hard place."  Suggestions, anyone???

A Health Update For My Friends

It feels so good when my blogger friends reach out to find out how I am doing, as the cajun just did!

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the cajun said...

Hi David, with no other way to reach you, I wanted to reach out agin. Please continue to post updates when you can. We're all anxious to hear your news.
We're all going through something and it's always good to let it out and share your feelings with others. That would be US!
Take care, my friend. and do write when you can. Think of it as therapy. I do and it works. I get feedback from folks like you who know what I am talking/writing about.

Cheers.
Here's to Silver Queen!

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(PS: my email is david at ladyslippercove dot com. You know how to change it to the correct format.)

Silver Stream Entrance Sign

Well this is day 39 in Silver Stream Rehab. and I am still not ready to go home, although I want to so bad!  Progress on the walking with a walker front: today I walked 180 feet with a therapist  holding on to me and a wheelchair following closely if I suddenly need to sit down.  I am doing leg exercises with weights on my ankles, plus a lot of arm exercises.

Front side of Silver Stream Rehab

Two major concerns continue:  The ulcers (lymphedema/cellulitis) on my left leg are just not healing.  My  doctor just came in and said they are trying to get me to a lymphedema specialist on the outside to treat and dress the wounds daily.  The other big concern is standing up from anything lower than bar stool height.  To that end, we have begun investigating a power wheelchair that has the the capability of raising the seat height as much as 12 inches, which will make transfers easier.  As a result, I am also investigating having a wheelchair ramp built onto  my front porch and raising the porch floor level to be even with the interior floor level.  Again, the power wheelchair seems like a favorable idea from my doctor's point of view, especially since the LGMD will only progress over time and my muscles will get weaker.

Existing front porch and steps

Thanks to all of you for the many cards and well wishes.  My spirit gets a boost with each one!