So, I guess it’s been a while since I updated everyone on my Mom’s ongoing health/neurological/CMT problems.

We saw Dr. Day (her neurologist at Stanford) a week or so before Christmas, where we found out that she had put on enough weight to be considered stable enough to start therapy. He wanted her to start physical therapy and occupational therapy two times a week for a couple of months and to start aqua therapy, at first, two times a week, progressing eventually to four or five times a week. Dr. Day also suggested that she would be slowly getting better over the next six months, to an almost, normal state.

She started PT and OT immediately. During her PT, she was discovered to be using incorrect AFOs for her problems and incorrect shoes, so they set her up with an orthotic specialist and he is currently working on creating the best AFOs for her! As soon as they are made and perfected, she will once again be working with her physical therapist. OT started out creating finger splints to correct, or at least stop the progression of, her clawing and night splints for her hands. Then, straight after New Year’s, my Mom was practicing driving and we, unfortunately, got into a nasty car accident with a traffic light pole. She was medically okay, but she stopped driving immediately. When her occupational therapist found out about the accident, she was told “no more driving” until we discovered the problem and solution for her issues behind the wheel. So, right now, she is spending her sessions behind the wheel of a simulator with the eventual plan to get her DMV okay’d to be set up with hand controls. Unfortunately Medicare won’t pay for her to have physical therapy at two locations, so until she is done with PT and OT at Stanford (a few more weeks is all that we are expecting) she can’t start aqua therapy at Sutter in San Mateo.

My opinion of PT and OT, right now, is that they really aren’t making her any better. Half of this is definitely my Mom’s fault, as she practically refuses to do any of the homework (or exercising) that is given to her. We knew that this would be a problem. I’m hoping that when she starts aqua therapy, it will start to increase her stamina and activity level, enabling her to have a better quality of life. We’ll see though!

There are multiple problems going on though. Over the past year/year and a half, she has been getting this constant rare eye infection in her left eye. We’ve seen quite a few people since she originally had it, spent hundreds of dollars on eye drops (my god, those things are expensive), and every month or so…it comes back. So we eventually saw this ophthalmologist at Stanford who discovered that when she closed her eyes, her lids never fully closed, so bits of dirt and debris could easily get into the eye when she was asleep. He referred us to an ophthalmic/plastic surgeon who is now going to be placing (yeah, I know TMI…) a piece of gold into her eyelid in order to weight it down! Ewww….thank god she has a stronger stomach than me! This will hopefully give enough pressure to the lid to fully close, but if it doesn’t she will have to go back in and have her lower lid lifted too. She’s scheduled to have this outpatient surgery (because she can’t be under full anesthesia unless really, really, really needed) done on March 1st (keep your fingers crossed!).

We’ve also finally seen an ENT doctor, after months of me trying to get her to make an appointment! The doctor discovered that Mom has a crooked/wonky septum that she either was born with, had because of that nasty fall last year, or was perpetuated by the fall. It doesn’t matter how she got it though, because she still needs to have it fixed! Apparently it is an easy surgery, about an hour and a half, but due to Mom’s inability to go under, it’s going to be harder to complete. We have an appointment with a surgeon at Stanford next Wednesday, that has done these surgeries under local, so hopefully he’ll take a look and decide that she is a good candidate for this type of anesthesia. If he doesn’t think she is, we’ll have to talk with Dr. Day, have her admitted to the hospital, and then have the surgery done. But, at least, whatever case it ends up being, she will hopefully be able to breathe a hell of a lot better and clearer!

The main problem that we have been confronted with though is that during the past week or so, Mom has been progressively getting weaker and weaker. She had an icky fall this morning, coupled with the shakes that have been there since Tuesday, and a weak left side. So we are now trying to get back into see Dr. Day in order to see what is going on. The sister and I are also concerned by the fact that we haven’t seen anything getting better in the last two months, which is a third way through the six months. We still go back to the idea that there is more going on than just a nasty reaction between the CMT and the diabetes, which we do understand has made her far worse than just one or the other. We are trying to decide whether to reach out to two other well-known and respected neurologists (Dr. Michael Shy of Wayne State University and Dr. Ahmet Hoke of Johns Hopkins University) to see if they have any further diagnoses or thoughts on her status.

So, there you are…I’ll keep on updating you when we have more information.