New Year...New DIAGNOSIS?!?

Blog entry, Jan 2018

Despite the arctic cold wave we have been experiencing, it is finally starting to warm up - a little. In my book' 50° is still “stay inside” weather. Even Ole’ Bessie, our handicap equipped van, didn’t care for the weather and took a break to get her ramp door repaired.

In spite of this, we rented a much newer van and drove to Columbus for a new EMG/NCS. After the electro guy got a strange look on his face, he left to confer with my Dr.  After a couple of more tests, my Dr. announced that I didn’t have Miller-Fisher after all, but did have an even rarer malady called GBS-AMSAN. This variety of GBS attaćks the nerve, itself, rather than the mylan sheath that insulates it. Now, I am not a doctor, but have read online that my recovery will be longer (oh, joy!), and my Dr. needs to be a bit different with some special letters after his/her name.

That explains some of the deep exhaustion I have been experiencing. I do tend to sleep in a bit, and often take a nap after lunch. However, I am always in bed by 10:00 pm, which is far earlier than before I fell ill. Still, I find I am more tired than I was when I arrived here 16 - 17 months ago. By the way, the van we rented to go to OSU/Wexner had newer (by 18 or so years) components and 110,000 fewer miles than Ole’ Bessie, but rattled and shook much more than I expected. Besides, I believe I can put the much cheaper collector car plates on Bessie starting next year.

I can’t wait to get back to my Model Railroding hobby! TV has seemingly become a wastland, but a couple of shows are out there that I follow. I can’t explain why but I enjoy a “reality” show about grown, wealthy men that spend all their spare time digging holes in the mud. Also, Rick Thomas comes over every Tuesday, and we watch a show that I think has killed more marines than have been killed in the last few wars we have fought.  “The Curse of Oak Island” and “NCIS” are silly shows, based on the premis of each, but we are drawn in by them, and normally drop everythiñg to watch new episodes.

Nanćy and I took out Prime and Netscape subscriptions, and have started sleeping our way  through the Civil War and Over America documentary series. We find them very relaxing - almost narcotically so.

Our grandson, Joshua, accepted an internship at the local aquarium, and is planning to work at Cracker Barrel near our condo. So he is taking over our condo for the duration. We really enjoy beiñg able to see him regularly, and he has been especially helpful.

Well, I guess it is time to wrap things up for this posting. Nanćy has covered me up in my chair with a blanket, which can only mean one thing: NAP-TIME!

End of Year Update

Where did 2017 go?

(Delayed posting this while Nanćy has been ill)

Here we are! A few more days and it will be Christmas. I have most of my shopping done, but due to my illness, have done everything by using technology that was at my fingertips. Doing my shopping this way didn’t bring me a plethora of spare time, but it insured that I got the best pre-holiday price, and I was assured, by the shear reach of the ‘net, that my choice would be in stock. 

This practice also insures that I will not be forgotten anytime soon, because of all the "special” deals that are already showing in my inbox, now that I am “officially” registered as a customer of their site.

Don’t get me wrong, I would welcome some spare time, but I have concluded that shopping online does not make time slow down. It just gets filled with Dr. Appts., and other stuff. It seems like we just got here (Elmcroft), but we have been here 16 months, practically, long term residents. Our condo is just 7 or so, miles away, so we go there frequently to get away from it all, only when we get there, “it all”, seems to have followed us. 

Eventually, we hope to get me back to the condo, with me in better working order. I need to get into our basement to do some additional culling, and unpacking. I know folks that claim to have unopened boxes from a previous move, but we really do!

Earlier, this year, I tried acupuncture as a means of helping my muscles remember their function. This was interesting, but in my case, not successful. I remember the doctor putting one of the needles in my forehead, only to be told by those near me that the doctor was just seeing how far she could “push” me.

Skeptical is my middle name, so I first talked with our family Dr., who, it turns out, was actually trained by the person that ended up administering acupuncture to me. The doctor (MD) that did my treatment from within the Dr’s group we have used for years. She now teaches this to other doctors in the group how this procedure is performed. In fairness to the technique, I did have a temporary pain reduction in my legs and arms, but the affect wòre off shortly after the session ended.

This Spring and Summer, I spent part of my time (2 weeks) in the hospital and in a skilled nursing rehab hośpital. Just prior to that, I somehow turned an afternoon’s procedure to break up a kidney stone, into a four operations, and 5 weeks of distraction, therapy, and frustration

I have very slight movement of a couple fingers and thumb on my right hand. Nanćy, and others says my left is starting as well. It is a reallyweird feeling to close your eyes and feel yourself making a fist (or any movement) only to open your eyes and find your hand unmoved, just laying there like a lump of clay.

Earlier, last month, Nanćy and I learned that a new neurologist had joined staff at the Wexner Center at Ohio State. He came from The Mayo Clinic, and specializes with the treatment of GBS. He also helped elevate Wexner to a “Center of Excellence” within the International GBS/CIDP Organization. We met with him earlier this month, and head back up to Columbus at the end of the month, after Christmas.

I like him very much. He really impressed us. He has actually seen this Syndrome in many other patients. Most of the Dr’s I have seen have very limited exposure to the syndrome, with many admitting that they have only read about it, and have no basis for or experience with treatment options. Of course, it didn’t hurt when his first recommendation was to increase my Salt intake.

This interaction was immediately pounced upon by Nancy and Becky, who also attended this “meet and greet” appointment. Needless to say I was reminiscent of the trouble I had 35 years ago, finding a grossly overweight, cigarette smoking, alcoholic doctor to do an employment physical.

Well, Christmas is upon us, and the weatherman’s prediction for snow is everywhere. I think that if God has any influence over our grandchildren, I would think long and hard about being weather-person as an occupation. After all, when an Engineer makes a mistake, buildings can collapse and bridges can fall down. At the very least, the mistake prone Engineer will probably not be assigned to anymore prime projects.

In contrast, weathermen, I have known, have all failed at their craft. But rather than be fired, they tend to get promoted to network levels, and receive payroll perks. Quay, sera, sera...

Hopefully, I’ll see you all in the New Year! Merry Christmas!

Steve

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Sent from Gmail Mobile via my iPad For updates on my recovery, see "howsstevedoing.blogspot.com"

Happy 50th Wedding Anniversary! December 27