Chair for now...train for later!

Blog Udate' December, 2018

This could be my last blog entry. But then again, I could hang around, continuing to run over and into things  with  my “dainty” - 350# pound electric chair. My aids all tell me that “…you (I) need to find a different name…” for my "electric" chair, but they quickly dismissed suggestions like: Killer, Terminator, Motivator, etc.

But realizing that the first case is a possibility, I’d like to mention a few things that I need to say about my condition, my attitude, and my life\faith in general.

First of all, my condition is changing, I am getting more movement in my arms and legs. Still, I am bound to my "electric chair" for any movement I can manage, but am happy for it. Despite its reputation, it allows me to escape from the more mundane portions of living/waiting for things to happen in a nursing home, which, I am told, should be referred to as a "SNF" (pronounced "sniff"). I also have a manual chair, but until I get my grip back, I'm currently unable to propel it 

As many of you know, I am a retired Professional Engineer. That fact alone, may speak volumes to those non-engineering types that must coexist with us, but we do tend to understand certain things more  quickly, lending to our reputation for having an opinion on nearly anything that comes our way.

What makes me crazy, is people who, admittedly - like myself, often jump to conclusions, giving a person that is in someway handicapped, little or no voice or value in the ultimate solution. Using the values and methods we have accrued over our years of success, we try to remedy an issue without understanding the basic causes that led to it becoming a problem in the first place.

While the chair may serve my current needs for mobility, it has also provided me with the opportunity to learn a lot about listening, letting others lead (and sometimes fail), but always being ready to learn from the ideas and differences we each may bring to the table. 

In about three months, it will have been five years since being diagnosed with the Guillian-Barré Syndrome, that left me paralyzed and confined to this chair. During this five year period, I've seen six different hospitals, seven different residences, and dozens, or so, doctors and therapists - all but one of which has has said that I should fully recover.

I am quite certain that no Docter wants to deliver bad news, but the one exception was my current neurologist when he leveled with me and suggested I embrace a "new" normal. 

That bit of opinion has made me think about what I am able and unable to do. It has helped me better understand my  attitude, as well as to get along with those that don't.

Many folks question what has happened to me and wonder why I am not bitter. To be correct about this theme, I have times during which I get frustrated and, yes, even bitter. But does it help?

  

There's no one I would've wished this (GBS) on. So how can I say "...why me?!?". You can't really ask that unless you hate someone enough that you wish to trade places with them. But God isn't about hate. What I am still here for may need to be done from my chair. I don't pretend to understand God's plan. I merely ask that I can be part of it.

I believe my restrictions will be removed, in this life, or the next. As my life and faith are concerned, my presence on this planet is a simple station stopover on the train to eternity. While here, I will work on whatever is put in my path. You see, I plan to be on that train.

-- 

Sent from Gmail Mobile via my iPad 

Change of address

It has been a while since I updated my blog, probably because I thought we were nearer the end of reportable events. As it turns out, however, things kept happening that totally consumed us.

Earlier, this year, we got involved with a new Center of Excellence (CoE) for GBS in Columbus at OSU’s Wexner Medical Center. After two visits, our Dr rediagnosed me as having a different type of GBS than I was being treated for.

All is fine, but it may take a “bit longer” to recover from this type (AmSan) than from the Miller Fisher variety. After all, I’ve only been at this a few years.

By most other measures, this has, however, been an eventful year! In  brief, I had a kidney stone that gave us a lot of trouble, then I was diagnosed with cancer and went through a treatment plan that included forty radiation doses over two months.

Not to be outdone, Náncy fell and broke her hip, had surgery, and is hobbling everywhere with a walker. She’s not out of the woods yet. Drs are talking about hip replacement.

Our van broke down, again. This time, however, we decided to get a newer van with fewer miles. To this end, I found and bought a one owner, ‘13 Caravan SLT with only 30k miles, and is bright red. It’s in Phoenix, and has never seen salt. It seems  nicely equipped, so we’ll know in the next week or so.

Oh yea, one other thing happened that affected us - we wère told that we had to move out of Elmcroft, ostensibly because “…they were concerned about getting us (me) out of the building in the event of a fire.” This was despite the rule that tenants are not to leave the rooms in event of an alarm. Elmcroft was sold. The new corporate folks appear to want all aides to assume a concierge role in an independent living model.

I’m now at a Emerald Trace, and Nancy is getting our condo ready to sell. Getting it sold is the key for us to have the flexibility we need. We resumed our Bible study with four new members. We we we being led through the book of Proverbs by Mark Roberts.

One more really good thing happened this Summer, that being the celebration of Nancy and me and our Golden anniversary. While our date is actually in December, we chose to wait.

Good thing we did! Despite my paralysis, I was able to stand and dance with my bride of fifty years (with à new therapy device Gateway had just received.) We made the local (and, as it turns out, National-slow news day) news, and got a posting on Facebook. 

That’s all for now. Thanks for checking in.

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

-- 

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

Happy 50th Wedding Anniversary! December 27