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

Water therapy! - Blog update from Steve

Wednesday of this week, I got wet! Really, really wet! I enjoyed my
first session of water therapy, and it was great! After lacing me up with more flotation equipment than I knew existed, I was lowered into the therapy pool where I could move my legs much more normally. I was able to walk, push off the walls, and generally enjoy myself with my natural buoyancy offsetting the resistance of gravity.

I have been asking for hydro therapy since, according to Nancy, started talking again. Here we are, thirty months into this "journey,"and finally it has happened. I was so excited by my legs that I failed to notice if my arms did, but we will do it again this coming Wednesday. My therapists said I would be tired and sore afterwards, and they were right. I couldn't move for nearly a day.

It has been too hot and humid to do anything outdoors. Labor Day weekend gave us a bit of a reprieve, allowing Nancy and I to see Tim, Flora, the grandkids, and our Mason-side extended family. The rest of the week, however, felt like an overheated sauna. Soon, however, our bodies will be covered with "white death," and we will remember these "dog days" of summer as "not that bad, at all."

Thank you all for following my progress and praying for my recovery. All I can ask for is your continued support, thru prayer, for my healing and restoration, so that I may pursue the purpose of Christ for keeping me here in the first place.

All settled at Elmcroft

Hi to all,

This past week and a half has been a whirlwind...a move, a surgery and a birthday!

 After 3 weeks of intense therapy at Health South as an inpatient, Steve has made the big transition to "regular person!"  Brings relief, bewilderment ("can I just leave whenever I want and wherever I want?", some fear and of course, happiness in being together after 2.5 years.  Let's see....how do we do this couple dance when one is not yet able to use hands and stand and the other has lived along for so long?  We are thankful to reach this milestone!

We moved into Elmcroft Assisted Living in Florence, Kentucky on July 28. Becky's whole family and Tim, Flora and Evy pitched in and they and Two Men and a Truck got the job done in an afternoon.  The "girls" spent extra time putting special touches to the apartment to make it seem more welcoming. We hope the rest of his recovery happens here and we move back to our condo in 6 to 12 months. The staff here could not be more attentive and we absolutely need all their help.  They even come in several times a night and turn Steve in bed.    He begins outpatient therapy at Health South later this week we hope.  He is more than ready.

It was great to have Tim in town for my birthday as he finished up the Art Works mural he had been working on in downtown Cincinnati.  He worked on it and stayed at our condo 8 weeks this summer. What a blessing to see him that often!  Becky came down for my surgery 4 days later so they both were here and such support.  Becky stayed with Steve one night while I was hospitalized.  I had been having new trouble with my heart and the replacement defibrillator has an additional lead to help my heart pump efficiently.  

Please continue the prayers as we strain toward the finish line when Steve can once again use his hands and we can return to our condo/home.

Come see us in our new place at 212 Main St. Florence KY.  We have a pool table here, foosball, a movie theatre and a beautiful patio:)

Love to you  all,

Nancy and Steve

On the road again...

Hi all, 

After a year at Rosedale, getting excellent care and therapy, Steve has moved on to intensive rehab at Health South in Northern Kentucky, Room 100. He got there on Sunday, July 10.   As you can imagine, it was hard to leave the staff and some resident/friends there.  

He gets 3-4 hours a day of intensive rehab, focusing on being able to take steps and transfer from surface to surface.  He has yet to master standing/pivoting.  Steve is" hard wired" to reach goals and he recognizes the structure at the rehab facility as "just like basic training!"  It does really wear him out though.  He welcomes visitors in the early evening around 6:30.  If you come during the day, you are welcome to watch his therapy, although he won't be able to visit much.  We think he has another week inpatient rehab.  Then comes the move to the apartment in Florence and hopefully more rehab on an outpatient basis.

This coming Monday, the movers and family will move some of our furniture from the condo to the apartment, about a 15 minute commute.  It is called Elmcroft Senior Living and it is a two-bedroom, two-bath apartment with a small kitchenette. No stove:(  There go my legendary cooking skills!  We are provided three meals a day in the dining room.  There are a lot of other amenities and we hope to get our feet under us again as a couple while Steve's healing continues.  We plan to return to the condo when Steve is able.

I have had some health issues arise since my July 5 blog.  A small blood clot in my lung brought on some additional pumping problems with my heart and I currently can push blood out at only 1/2 the rate I used to.  This leads to great fatigue and breathlessness.   I am now on a blood thinner and fortunately, the heart issue can be fixed by replacing my current defibrillator with another model that has an additional lead that will fix the problem and I'll "beat" normally again.  The procedure will be Aug 3, when I'm off the current dosage of blood thinner.  Prayers appreciated that I will find patience with my situation and learn how better to "let go and let God" be in charge!

I'll let you all know when we are both settled at Elmcroft and looking forward to visitors!

Love

Nancy and Steve

Moving into the future

The last 3 weeks have brought the usual hurdles and reprieves in the GBS march forward.   The most frustrating was the necessity of renewing our Medicaid eligibility, which involved sending in a large packet of information, then receiving a form letter saying we needed to submit two documents (that we already sent them) and proof of the value of our time share.  Except we don't and never did have a time share! I told the worker that would be like proving the value of our castle.  She played along with my poorly disguised joke and said she would like to be the first one to move in to said castle!  We are working through the logjam, although we may not need Medicaid because Steve may move very soon from the rehab/nursing home.

As I wrote last month, it is time to try and move into the future we hope is waiting for us.  To this end, we put down a deposit on an apartment in an assisted living community in Florence KY, very central to everywhere we go.  I will live with him :) As Steve can't yet use his hands nor stand alone, we needed somewhere where we would be able to purchase the help we needed right in the facility. Three meals a day are included and many amenities.  We would rather live in the condo, but Steve can't access what he needs there.  We pray that the next six months to a year brings enough healing that we can both move there.

We are at 28 months of living separately, so while we are eager for this, it will certainly come with adjustments.  Please pray for this.

We are waiting to see if Steve can be admitted to intensive rehab for a week or two before we move to the apartment.   His current therapists know that he is ready for 3 hours of therapy a day, with special equipment that will suspend gravity so he can learn to take steps.

Lastly, very good news regarding his continuing 6 month follow up to the oncologist.  There is still no sign of the cancer from 5 years ago returning and he has "graduated" to checkups every 12 months!

Check out Steve's blissed out face in the picture sidebar of him getting his Father's Day gift - his first massage!

Thank you so much for traveling along with us on such a long journey.  None of us could have imagined the length and all God brought us through.  

Love

Nancy and Steve

June Update

Hi blog followers,

May and half of June flew by, as it probably did for most of you!  We had a family wedding on a riverboat, our oldest grandson's high school graduation, a foot surgery for me and Steve's aunt and uncle visiting from California for a week.  Becky came down for the weekend with daughter Diksha, and is visiting Steve as I write this.

Tim is living here during the week for eight weeks this summer, going home occasionally on weekends to Ft. Wayne.  He is working on another mural for ArtWorks Cincinnati. (Main Street! Check it out!) 

Steve and I are striving to move more into the realm of "what life used to be" before GBS.  He continues to work hard in therapy and they often have to tell him to rest in between sets.  With two therapists help, he stood up in the parallel bars this week, for six times, a minute each time.  A new record.  They are using pulleys to help him manage utensils for feeding, with his hands tied to pulley grips. I am amazed by his humility and patience as he learns to feed himself again.

The van is fixed again and I've been able to take Steve to church several times and with the help of friends he has gone to two picnics.  Tim and boys carried him in his wheelchair into the house for Father's Day and we had a cookout.  He stayed about 7.5  hours and thoroughly enjoyed just a quiet Sunday afternoon with family. Since he was also able to attend church that morning he was gone from Rosedale about 10.5 hours! A new record for stamina! 

As you can imagine, Steve longs to come home for good, but the cost of enough help to meet his current needs is prohibitive.  We are close to settling on an interim living arrangement where we both can live in a kind of assisted living apartment with Steve receiving the highest level of care the facility offers.  We hope that arrangement can carry us over into more of the kind of life we used to live, until we can return home to our condo once he is further healed.

We so appreciate your faithful reading of the blog and your prayers.

Love, 

Nancy and Steve

May update by Nancy

Hi blog readers!  The last month, we've been amazed at the inventiveness and determination of Steve's therapists to find ways to help him reach next milestones. They have rigged up a pulley system which supports his arms in the right movements to begin to feed himself, even down to getting a magnet for the bottom of the plate so it will help pull the fork down to do the scooping motion.  They have supported (two people) him in standing between the parallel bars and he has stood for up to 2 minutes at a time.  

You may remember that about a year ago, sitting on his bed for that amount of time was a victory.  His wheelchair use at that time was also rare.  He now stays most of every day in his motorized chair and you can often find him kicked back in the recline position, taking a little snooze almost anywhere in the halls or outside:)

We are two steps forward a half a step back in getting independent in the van we bought.  We have enjoyed going out to church several times, eating out (in the van) and taking drives.  We still needed help getting him up the ramp that pulls out of the van.  Recently, Sam Slayden installed a winch system in the van, which pulls the wheelchair up, requiring less muscle power.  (I have none!)The goal is to be able to go out by ourselves and broaden our travels around town!  Currently the van, we call her old Bessie because she creaks around, has a broken ramp/door and must go back to MC Mobility this week for repair.

I continue to research where Steve can go when he leaves Rosedale.  There have been a few disappointments and a possibility. One facility we liked can't take him as long as he needs two people and a transfer board to be moved from chair to bed, etc.  The other facility we thought was the one told me that he must be able to feed himself....even if I live with him.  State of Kentucky laws.   Even in the midst of all the calls and visits I make, I know God will lead us to an answer, just as He did when we found Rosedale..

I've recovered from my fall in March:)  Next on my agenda is surgery on my toe that didn't heal correctly during last June's surgery for all toes on my left foot. That's scheduled for this Friday, May 20th. Ugh.

Your support and prayers are crucial as we stay the course.  There are quite a few hours of discouragement, more for me than Steve it seems.  He continues to amaze me and many others with faith that is bearing fruit of peace, patience and perseverance.

Thanks so much!

Nancy and Steve

Timely encouragement

The last couple of weeks have been eventful. As I look back on things, the Lord has revealed a lot of encouragement that I did notice, at the time, but didn't always put them together as a continuous presence of our Lord like I see them now.

First, there has been all of the care, concern, and prayers from our family, church, caregivers, friends and people that havecome to me from crossing my path or here in this blog. Even some friends from Mowreystown, OH, where my son preached for a while, stopped to see me, adding that they, and many others at the church, were following this blog and praying for me.

Then, I think about Bob & Sue from North Carolina, who have continued to encourage me. Bob is a GBS survivor as well, who has visited me, routinely emails and has a story very similar to mine. 

Last week, I had a visit from DEBBIE, a former GBS patient that lives in Covington and was here visiting a friend. The She had waist down paralysis, and took nearly two years to recover. To listen to her is like telling my own story. She had the flu (didn't mention a flu shot), didn't fully recover, was diagnosed with MRSA in her sinuses, had steroids, then went into GBS. Took her 4 months in ICU, and the balance of two years in a nursing/rehab facility . When she finally went home, she wasn't fully recovered, but continued to heal. Today, three years after starting her trek, she walked into my room, totally normal with no after effects. 

Last Thursday, Nancy picked me up in our van, and we went to the north side of Cincy to meetings with two medical product suppliers. We learned A LOT in a very short time. And, we ended our trip with a visit to a Taco Bell. (Chalupa Time!!!)

Then, we connected, by phone, with Doug, also from North Carolina. He, too, is a recovering GBS survivor, who had a brief infection, after a flu shot, was put on steroids, and the rest is history. It sounds like he was as far gone as I was, including total paralysis. Doug was under direct rehab care, until his insurance helped him to decide to return home where he continued his therapy – and self funded outpatient therapy. He continues to recover through gym exercise 3 – 4 times per week. He is, by his appraisal, 80% - 90% back to normal after three years. He can type, drive, travel and work.

Yesterday, Nancy picked me up and we went for a long ride through the country, but not before stopping at one of my old haunts – Harbor Freight. I was happy that they survived the drop in revenue that must have occurred two years ago when I got sick. Even Nancy said it was fun to push me through the aisles.

These stories of patience and recovery have been an encouragement that I needed, and an answer to one of my prayers. Thank you, Lord, for knowing what I need, and then providing it – continuously!

Steve