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

September update

From Steve:

Where on earth did Summer go?  It seems like just a few weeks ago, we were moving into our apartment and sorting through clothes to find enough duds to wear in the upcoming winter.  Now we are doing the4 same thing.

The addition of a shiny new ramp to the front door at the condo has made it possible for us to spend time there.  Previously, we needed several men to help get the wheelchair in.  Either that or the National Guard to get me in.  We may still need them for me to get into the lower level where my trains are.  Currently I can’t get to the lower level.  But I’ve enjoyed occasional dinners Nancy has been able to prepare at the condo.  

We reached the end of our outpatient therapy as far as Anthem is concerned.  However, we are impressed so far with the in-home therapists.  They know their stuff!  They are willing to look into braces with me that would provide a moderate level of support by locking my legs.  

The other area of concern needing your prayers are my hands and forearms.  Having spent far too many hours searching the ‘net’ for solutions that may help, almost everything I found was linked to research efforts or targeted at amputees.  I am not ready to cut off a hand or two just to become more attractive to the prosthesis market!

On a brighter note, the Wexner Center at Ohio State University in Columbus has been named a 
GBS Center of Excellence.  The GBS-CIDP Foundation is an international group that follows, supports, and in some cases, intervenes on behalf of survivors like me.  Nancy was able to get a December 4   appointment with a neurologist who specializes in GBS.  We have been looking for such a doctor for years.  Please pray for this development and that we won’t be disappointed with the results.

From Nancy:

We are grateful that you checked back on the blog…..the entries have been far apart and in a way reflect the journey right now…..just keeping on keeping on, cheering each other on and trusting God for further healing.  Steve typed this entire blog with his mouth stylus, letter by letter on his ipad.  Just one example of his patient determination to stay in contact with you all😊  He also emails, uses FaceBook, Face Time, Skype.  So it would be most welcome if any of you could drop him a note or give a call (see addresses posted below).  We also have a very good set up  here at Elmcroft in Florence Kentucky for visiting!  Please continue to check in!

Blessings, 

Nancy and Steve

Steve cell 859-878-8542

slparsley@gmail.com

Elmcroft Assisted Living

212 Main Street 

Florence, KY 41042

Summer 2017

Blog candidate for 6/2/2017 - by Steve
---————---———---————---————---————
It has just turned June, and despite knowing otherwise, it also has become Summer, 2017. I really can't account for the passage of time, but I do feel better, so something is recovering.

The past two months have been focused on my kidneys. While doing a routine checkup a few months ago, Docter's found a largish stone in my left kidney. It was located where it was unlikely to move and cause problems, so I was told to merrily keep an eye on it.

Well, it got huge, and was causing problems, making a visit to a Urologist an important thing to do. The Docter was very re-assuring, so surgery was scheduled.

What was supposed to be a simple outpatient liptotripsy (blasting the stone into small, easily passable pieces), it turned into much more. Following my third visit to their surgery center, I was stuck with needles 17 times in two days before they decided a PICC line might be a good idea. But after the third attempt to make everything right again, I developed a blood infection that landed me back in the hospital for a week, followed by a week in a skilled nursing hospital.

In the mean time, some of you heard about Nancys fall and broken knee over at Florence Mall. She also hit her forehead, so I have been living with a raccoon (black eyes) these last few weeks. This time, I can credibly tell people that I have an ironclad alibi. But after taking it easy for a few days while Becky and Tim both swooped in to help, we're both feeling better.

We went down to the townhouse on Monday, and took a final look at the rennovations we will need. I have contracted with a company from Cincy to provide and install a modular ramp to our front door. Hopefully, this will allow me access to our home, ending all the speculation about sleeping in the garage or on the curb out front.

After the fourth and, hopefully, final kidney procedure this week, I had nearly two hundred messages, voice mails, and e-mails, from being gone only a few hours. I feel great, better than I have in many months. Once this is mostly resolved, we need to celebrate!

May God bless all of you who have been praying for us. DON' T STOP!!! We need your prayers now as much as when this all started. But some of our attention is being refocused on the task of moving back to our home and finding people that will help us with this transition.

Good fortune and God bless to all - Steve & Nancy

May 2017

Hi everyone,

Hope you got the chance to read the article Anthem put in their last newsletter (last blog entry).  Our story went out to all Anthem subscribers!  The link has a before and after pic of us.  (Worth a thousand words:). We hope it will encourage many in their own health challenges.

Since then, 

~Steve was approved for another set of therapy (8 sessions)!  He continues to make progress and one way we know this is the therapists measuring his changes so the insurance will grant more sessions.

~I fell and fractured my kneecap and must wear a brace to keep my leg from bending for a month:/

~Steve has been dealing with a kidney stone and finally, after three procedures, it is gone.  However, he contracted a kidney infection that became a blood infection and has been on powerful antibiotics since he arrived in Christ ER Tuesday evening May 9.

Doctor isolated the most effective antibiotic to give him but it only comes intravenously.  Therefore Steve has a PICC line, is still at Christ in room 6016 and will be going to skilled nursing for the remainder of the course of antibiotics.   A nurse has to infuse him 2X a day.   

Though the blog posts have been infrequent, we very much still need your prayers and support through this stretch of the recovery landscape.....it's one step in front of the other, one day at a time.

Love, Steve and Nancy

Poster children

A great article written about Steve and Nancy for the Anthem member newsletter. (A google search says that Anthem has 40 million members!) If you want to see the article with pictures, try using this link...

https://www.insidemyplan.com/page.aspx?qs=472529ec60bdf32a85a4b3aceecddc36f6ed845b620621027e43005b8df841746e8dae9f23153b0aea19080c4a1865699b241fc062b92dccd88cdefd266c5d433b37fa88fc554974756c3e95105bdda6fe6b986dcc9cbf9c809db77aa6789108332861a8a462c7dc6c4e3f7cf1789ca8512547dbf1040c03

Inside My Plan

April 2017

Paralyzed patient's journey back to health

Steve Parsley is recovering from GBS slowly but surely with the help of his devoted wife, Nancy.

What Steve has accomplished to recover from GBS is pretty amazing, says his wife Nancy, proudly.

On the eve of their move to a new condo, Steve and Nancy Parsley saw their world turn upside down. Once high school sweethearts and married for 47 years, the couple would not be moving into their new home together. They would live apart for more than two years.

On March 9, 2014, Steve was admitted to a hospital with flu-like symptoms. The next day, the 67-year-old former engineer was diagnosed with Guillain-Barré Syndrome (GBS). GBS is a rare disorder in which the body's immune system attacks the nervous system. As a result, Steve became fully paralyzed. For about a year, he breathed through a tube inserted into his windpipe and ate through a feeding tube. He could not speak. With Nancy's help, he first learned to "talk" with his eyebrows.

Steve is recovering slowly but surely — achieving one milestone at a time — with the support of his devoted wife, family, friends and a Case Management (CM) team from our plan. Over the last two years, he learned how to speak, eat and sit up. "Recovery for Steve has been long, arduous and slow," says Nancy. "Complications occurred. He had a bleeding trachea, pneumonia, MRSA infection and hematoma (blood clot)."

Plan helps with post-discharge transitions of care

Nancy and Steve indeed have been going through some very rough times. But they feel privileged to have "someone" make things easier for them to get help with Steve's therapy needs. That "someone" is Cynthia Lou Crouse, a case manager with our plan. "Until something like this happens, you can't know all the things you have to do," explains Nancy. "You can't imagine how I felt when out of the blue, I get a call from Cindi Lou. From then on, we were working together as partners helping Steve.

"Before Cindi Lou called, we just thought of our health plan as a plan with no face. Cindi Lou gave a face to our plan. She really understood what we needed and why we needed something. She helped us understand how to interact with our health plan so we can get the help we needed. She would explain to doctors and therapists why Steve had to get certain types of therapy and rehab. She helped us get the approvals we needed. Steve has to keep up with his therapy sessions so his muscles won't regress. Not all therapy providers know enough about GBS and how each GBS patient is different."

Cindi Lou and her CM team went into action for the Parsleys in 2015 after Steve got discharged from the hospital. The team helped make Steve's transition from one type of rehab care to another easier. "Working with our medical directors, Dr. Michael Smith, Dr. Linda Hotchkiss and Dr. Mark Tussey, made this all possible," says Cindi Lou. "They were committed to Steve's continuity of care. They made sure there was no breakdown in Steve's benefit coverage as he transitioned to different levels of care." Cindi Lou continues to work with the Parsleys today.

More milestones

This year, Steve is focused on making his legs stronger to be able to stand and hold himself up on his own. He also leads a bible study group and is quite active on the internet. "I see this as a way to share my faith and knowledge of GBS, a little-known ailment," says Steve. Nancy adds, "Steve never misses a chance to talk about his doctors, aides and therapists. They helped us find our way through the complexities of health care."

And finally, for the first time in more than two years, Steve and Nancy are now living together in an assisted living home in Kentucky. A huge milestone!

In his blog, Steve notes: "We have a great group of doctors, friends and supporters that are always at the ready to help. We can only pay this forward as we move on. I sincerely hope none of you ever need the type or amount of support we have received."

Day 1,096

I guess it has been a couple of months since the last of my blog posts, which means I should get started and let everyone know what we've been up to.

To begin, I am making frieñds with my new power chair, but not without going through a fèw trying moments. The speed control via the joystick has been the biggest challenge to me and my assistañts. It seems that it is much “touchier” than anyone expects, thus creating some very exciting moments. But several of my aides have learned to drive it, and are now chiding those that are running into things.

The joystick handle is shaped like a football goalpost. Once I get my hand on it, I'm fine. However, the handle broke, leaving me with a button to steer with. It's a good thing that my friend, Rick, was able to repair the original. I think the administration here was about to set me and this chair out on the curb.

I believe Nanćy posted that we moved to Elmcroft for assisted living. Well we have moved again, only this time it was internal to the facility. We are on the second floor, now, giving us better access/egress to the facility, without needing elevators to get in or out. It is, also, easier to deal with our Charlie "the dog", as he has become known to distinguish himself from Charlie, our beloved maintenance supervisor. The room layout is a mirror image of our previous unit, but I think it has Charlie "the dog" confused.

Since I last posted, I have started with acupuncture to help wake and stimulate my nerves. Frankly, before the treatments, my “needle-phobic” body sounded the alarm, feeling it didn't need more stimulation, but we proceeded anyway. Last month, I had my third treatment. They put a dozen or so pins in my legs and arms, and then connected me to a pair of boxes that were set to shock the heck out of me.

They even put a needle in the center of my forehead (but friends from our Bible Study assured me that this was done just for the doctor’s benefit, to see how far she could push me.)

The therapy seems like it helps a bit, but its effects wear off in a couple of days. According to the Dr., this is normal, and it is taking longer to wear off with each treatment. Theoretically, it will get to a point that stays with me, and I won't need to stop, periodically, for a fill up.

We have started a study by John Eldridge on the power of prayer. It is an excellent study, directly from his new book "Moving Mountains" which is based on the Bible, itself. It has challenged me to restructure my own prayer life, and to pray for everyone that has been praying for Nanćy and me. I would strongly recommend this study to you all.

By the way, thank you for those prayers. Without them, I don't know where we would be. May God bless each of you with the fullness of His Spirit.

Steve

Turtle or Rabbit? - A post from Steve

Here's a blog posting:

Blog Entry for Jan 21st 2017

Over the past several weeks, I have been learning how to drive (a wheelchair, of course) all over again. This is a brand new chair that I will keep to facilitate my mobility. It has displayed a couple of problems, so far. It's recline feature doesn't work, and it still needs set up for TV control, as well as integration with my cellphone.

Still, it is good to get out and around, and it serves that purpose well. The chair has five speed profiles. I have thus far tried the first two; turtle, and rabbit. Turtle starts to move at about 0.2 mph, and goes 1.2 mph at peak. Rabbit is essentially twice the Turtle mode with its top speed at a blinding 2.4 mph (a tiny bit faster than your average walking speed - and Yes, I realize we live in a "home with long halls").

I have been afraid to try the "Off-road", "Commuter" and "Oh, my gosh!" settings, but they are there for the bold to try. Absolute top speed is about 7 mph, which seems really, really fast when you set as close to the floor as I do. Range, without a recharge, is about 14 miles. Not enough for a vacation trip, but good for a joyride to the mall.

We are looking forward to going home to our condo, or possibly moving to a unit closer to town. That probably won't happen before Summer, but we are starting our research along the issues of handicapped accessibility. On that point, have any of you noticed how is many doctors' offices and hospitals are 

substantially un-accessible? As a licensed engineer, I am, perhaps, overly sensitive to this issue, but now that I have become wheelchair bound, I really understand the laws and standards that grew out of the ADA.

Changing therapy providers is another activity that is consuming us. We were using a rehab unit near one of the major hospitals here, but I think enthusiasm fell off when they realized how slow and incremental my recovery could be. The newer unit is closer to the apartment unit we are living in, and seems a bit more enthusiastic about my prognosis.  Time will tell.

Aside from that, I have been improving and getting some motion back in my hands and feet. I still cannot stand or use a walker, and my arms and hands, are still unable to be used, but we have detected some weak muscle activation that keeps us encouraged

Nancy has been a real trooper through all this, despite having her own heart and medication issues. Fortunately, we have a great group of doctors, friends and supporters that are always at the ready to help. We can only pay this forward, as we move on - I sincerely hope none of you ever need the type or amount of support we have received. Thank you!

Well, that is all for now. I will try to provide another update shortly.

-- Steve

Sent from Gmail Mobile via my iPad

January 2017

Happy New Year to all our followers who checked back in after a long period with no posts.  Thank you for walking with us still!

For a while I had some issues with my heart and went to the hospital in November where I had 7 lb of fluid siphoned off. I was walking only about 20 steps before getting out of breath. Now I have gotten a good deal of my stamina back and will start cardiac rehab this month. 

It has been, and continues to be, a big adjustment to community living.  Elmcroft has a group of aides who help Steve with dressing, transferring to another chair, showers and getting into bed at night.  In addition, several others come in during the night to help him get into another position in the bed.  They have the best attitude for a very physically and emotionally demanding job. We have a pretty close relationship with most of them by now.

When Steve "graduated" from Rosedale inpatient rehabilitation, we were so glad to be living together again!  We underestimated the task of "syncing up our lives" again.  Steve remembers virtually nothing from the first two years and I lived a solo life as visitor, running the household and acting as overseeing "case manager" of Steve's care.

We are getting out together now several times a week in the van we bought and Steve's new electric wheelchair, which we got through Medicare.  He can go right up the ramp and back down by himself, saving the need to find help for pushing him up the ramp.  We long to visit the condo together and hopefully he will be able to get in the door with a portable ramp we bought.

We are thankful to be at Elmcroft where Steve can get so much daily assistance.  Our prayer is that Steve's hands and feet will begin working again soon and that we can return to our condo or another one more accessible.  We appreciate your continued prayers as this leg of the journey has its own challenges to our adaptability, patience and faith.

Love
Nancy and Steve