Wednesday, June 30, 2010

Our visitor

Wednesday, June 30, 2010

I had my follow-up appointment at Drake Center today. The high that I been feeling the last couple of days due to my increased strength and energy and independence, was dashed by the actual numbers. When the doctor checked my strength, I showed little or no improvement since I left the center. Most distressing was my hands, which formally had been able to pull at 8 pounds of pressure, now could barely register.

I fumed for hours, surrounded by a dark cloud of cranky precipitation I rained on everything I could. At one point in the day, Adrienne said to me, "Please bring back the nice Michael, the kind Michael. I don't like this one."

The doctor asked if I declined after I left Drake. I reminded him that I was declining while there. He just didn't believe me. That was somewhat satisfying.

The truth is I'm adapting well to my new life. I have become more active, more involved in caring for myself than ever. I clean my own dishes, give the dog her medicine, and go in and out of the bathroom. I still struggle with buttons and zippers though. That is going to take some time and maybe some creativity. Adrienne thinks she might be able to build something that will help.

Gone are the days when I couldn't brush my teeth or feed myself because I didn't have the strength. My legs, shoulders and abdomen are recovering. My further extremities will recover when the nerves are repaired. That is going to take some time.

I'm going to be in a wheelchair for a while, and I am OK with that. I have seen that I'm capable of recovery, and that is the best news. I will continue to widen my circle of activities and work towards independence.

My granddaughter Mercedes has come to visit us for the summer. She's a delightful child, two years old, blond hair and blue eyes. She is very active and she loves to laugh. Of course being a two year old, she is still a two year old.

She is very curious about my accoutrements: the wheelchair, the mantihose, and transfer boards. She helps out with my transfers, getting the board from its storage place and bringing it to me, taking the legs from my chair and putting them in the trunk of the car when we're going someplace, and best of all yelling Go Grandpa go!" when I slide across the board.

I am so blessed.

Saturday, June 19, 2010

It’s all good

Wednesday, June 16, 2010

There is really good news, like praise God for the miracle of modern science good news. The treatments are working. After the second or third day of IVIG treatment, and a week on steroids, Alex noticed that my strength was returning. I could pick up my tray table and move it off me. While transferring from the chair to the bed, legs moved. I am getting stronger every day. I just spent 20 minutes cleaning up the scraps of my lunch and putting the dishes into the dishwasher.

Here's a list of some of the things that have improved:

  • Confidence with my transfers; I was never certain when my arms would give out and my body would pitch forward into space. Having confidence that I can support my upper body without having to worry about my elbows buckling makes getting from place to place a lot less scary. My legs have improved also.
  • Feeding myself; I needed help getting the food into my mouth. Even with a special device over my fork, I couldn't hold it even with both hands.
  • Wrist strength; I no longer hit myself in the face with my fist. I'm also better at picking things up and putting them back down.
  • Getting dressed; I can change shirts by myself.
  • Typing; I still rely heavily on voice recognition software for my phone and computer, but I've regained in the ability to push the keys.

Immediately after finishing my last IVIG treatment for the month of June, the hospital's free wheelchair accessible transportation took me to see my local physician. It was a very informative appointment. He was very helpful, taking great pains to answer our questions. For once Adrienne didn't have to position herself between the physician and the door to prevent him from leaving, a problem we often have with neurologists.

He upped my metformin, my oral diabetes medication. I am also doing daily blood tests

Starting tomorrow I'm going to begin taking Wellbutrin for depression and to quit smoking. The reason I decided to quit smoking now, or least once the Wellbutrin starts to take effect, if the IVIG does not work, my best hope will be to get into a clinical stem cell trial. Which I'm sure if I'm smoking I would automatically be disqualified from. Note to myself, is this an example of irony? I don't think so. I think it might hubris, with the consequences of my decision to smoke being greater and much quicker than I had expected them to be.

As soon as it arrives from a mail order pharmacy, I will begin taking Cellcept, an immunosuppressant. Yesterday I asked my physician if I should get my tattoo before I started taking this medication and he pointed out that my immune system has already been compromised by the steroids. No more tattoos for me.

My physician informed me that because I'm taking steroids, a surgeon would be reluctant to operate on me, any wounds will take longer to heal, and there is an increased risk of infection. I've already begun to fantasize about what fatal microbes I might be inheriting from every handshake or cough.

I still push against my own perceived fears; today the three of us took a trip to the mall and I was instantly overwhelmed. I was aware of how small the world my world had become. I felt like I was a very tiny person living in a world of magical giants. I was awestruck by the amazing things that they could do..

I used to enjoy roaming through the stores in a mall. It was a good stress relief for me. Going into a store on my own the first time was intimidating, a feeling that was exacerbated when I knocked over a pile of boxes. The hats I wanted to look at were out of my reach, but I was quickly surrounded by every available clerk in the shop. They helped me find the ones that fit me, but were reluctant to help me move my chair over to the mirror (the carpet was very thick). This became a pattern; the salespeople either pretended I wasn't there, or they mobbed me. Being ignored made me feel frustrated, but all the extra attention made me feel nervous and anxious.

The mall was a great opportunity for me to practice interacting with other people. I didn't realize how hard it had become for me to talk to a complete stranger, unless they're a medical professional. There was a giddy moment when I rolled away from my companions to check out the watch counter at a department store. Watches, I explained to the lady behind the counter, were like crystal meth to me and I was fixing to score. I had no intention of buying, but it was thrilling to put beautiful things on my arm and admire them. She practically threw a variety of beautiful watches at me.

I had forgotten how much I enjoyed looking good. I used to take pride in my personal appearance. Wearing a fashionable shirt and a clean pair of slacks gave me a sense of self satisfaction that I had grown used to and accepted as I've gotten older. I would admire my accoutrements and view them as signs of success and maturity. I gave all that up when I went back to the hospital in April. Since then, my wardrobe has consisted of shorts and T shirts.

While in the mall I faced another significant challenge; using a public restroom. Presently I am unable to do buttons and zippers. Therefore going to the bathroom requires a companion. Fortunately for me, Alex volunteered to help. He also gave me a quick Spanish lesson. He also noticed that there were special cutouts under the sinks to make them a wheelchair accessible. This was another first for me; I was able to wash my hands at a sink.

Some goals for the future:

  • Buttons and zippers
  • Sit up in bed
  • Use my feet to move my wheelchair
  • Turn my bedside lamp on and off

My step daughter Natasha asked me to describe what my world is like. My world is very small. And what is big in my world, is tiny in hers. Despite the obstacles, I am grateful for the process I am going through because I hope to rejoin her in that big world of magic and wonder. The process of getting there will be a journey filled with miracles for me and I will praise God for each one.

Friday, June 11, 2010

Late night thoughts

Friday, June 4, 2010

Last night I had trouble sleeping so I tried listening to music. Eventually a rhythm and blues song from the 1960s by a group called The Soul Swingers, called "A Brighter Tomorrow," came on. I started to choke up as I heard the words of the chorus, "Only the strong survive/Be mighty mighty/Show appreciation/Have some inspiration/There's a brighter tomorrow." Then the next song played and then I heard Aretha Franklin singing "Somewhere over the Rainbow."

"Somewhere over the Rainbow "always moves me. Aretha Franklin manages to infuse so much longing and also hope into the way she sings the lyrics. Why can't she leave her dreary present for golden future? If mere birds can do it, why can't she fly away to her brighter tomorrow?

"I don't want to be brave. I don't want to be brave," I began to repeat over and over again. I was being crushed in my bed. I was trying to be good; I was trying to be positive. The harder I tried to be positive, the worse things became.

The promise that things would fall into place once I got home was not coming true. I was getting weaker and weaker. And the news from my neurologist was far from positive.

I didn't have Guillain-Barre Syndrome, I had Chronic inflammatory demyelinating polyneuropathy. My brighter tomorrow, my rainbow had become further away. My neurologist explained that unlike Guillain-Barre Syndrome, Chronic inflammatory demyelinating polyneuropathy will require treatment for the rest of my life. Instead of recovery, I am now thinking in terms of remission and relapse.

When my hands became numb and tingly at the University of Cincinnati hospital, my attending neurologist told me that sometimes Guillain-Barre Syndrome reaches a plateau, and then dips again. As the numbness increased, and typing began more difficult, I became concerned. When I was discharged from the University of Cincinnati and went to the Drake Center, I was told that I was getting better. Not weaker.

While doing research on the Internet, Adrienne and I found the same article in a prestigious neurological magazine, comparing Guillain-Barre Syndrome symptoms with chronic inflammatory demyelinating polyneuropathy symptoms. The article's conclusion was that if symptoms were persisting, despite fluctuations after treatment, eight weeks after the initial diagnosis, physicians need to consider treating for chronic inflammatory demyelinating polyneuropathy.

My symptoms first appeared at the beginning of March, when my calves began to tingle and I could no longer go upstairs or run. Eight weeks after that was April 19, when I was at the University of Cincinnati hospital. That means that while I was in UC, they could have started treating me for chronic inflammatory demyelinating polyneuropathy.

The most common forms of treatment for chronic inflammatory demyelinating polyneuropathy are IVIG, steroids, and immune suppressors. Instead I was getting plasmapheresis and being sent to the Drake Center, a rehab hospital, where they continued to insist that I had Guillain-Barre Syndrome.

After I got home and explained this to my local doctor, he tried to get me to see a neurologist as quickly as possible. He was even willing to write a referral to the Cleveland Clinic. I wasn't sure I could handle a car trip that long, so I asked them to see if my Cincinnati neurologist would move the appointment up. She refused and my appointment remained for June 1, three weeks away. By the time I met with correct be my limiting her, 15 weeks had passed since my symptoms appeared and 13 weeks had passed since I was diagnosed with Guillain-Barre Syndrome.

By nature I am a pessimist. My mind always drifts towards the negatives. A few weeks ago while being visited by a friend; I gave a voice my biggest fear, that "these are the good old days." I am much weaker than I was at that point. I could hold a cigarette and smoke it without being afraid of dropping it in my lap. Now I only dare to smoke when someone is nearby.

In the dark, by myself, I searched for comfort. The only positive aspect my situation I could find was I could admit that I was scared.

One week later

I started taking Prednisone, a powerful steroid, last Saturday. It seems to be helping; I've had more energy and people have noticed that I have more strength and control in my arms. The downside is that I've developed steroid induced diabetes.

Soon I will start taking Cellcept, an immunosuppressant most commonly used to prevent rejection in organ transplants. If it helps to call me down my immune system, I will be able to stop taking the prednisone, which should cure my steroid induced diabetes.

Today was my first IVIG treatment. I will get one a day for the next four days than a month from now I will get another set of five. This will probably be a lifetime thing, unless a new treatment is discovered.

I can't wait to see what I'm like a month now.

I teared up again when I was wheeled into the outpatient surgery at wing at McCullough-Hyde Hospital in Oxford today. The same nurses who held my hand and prayed with Adrienne and I were there. These are the nurses that had worked so hard to help me get into the University of Cincinnati Hospital when I told them I was too sick to go home on April 12. I thought about them often and I'm so grateful to be back under their care.

This is going to be long process, and I need to be strong. I need to be inspired, and I'm talking about heavenly inspiration. I remember that the final stage that victims of a catastrophe is the stage where they redefine themselves in their new lives. The pains I felt this last week were not just physical, they were growing pains. God has a plan for me. I don't know what that it is, but I believe it will leave me a better, stronger, smarter man.

And lastly, I need to show some appreciation; Oxford is beautiful this time of year, I have a beautiful house that has been extensively remodeled to make my recovery more comfortable., I have a devoted wife and son to care for me while I can't care for myself, and I'm surrounded by a circle of friends and volunteers and professionals to help me.

And I have the gift of music to comfort me and sometimes make me realize that I have more power that I think I do. After all, birds can fly over the rainbow, why can't I?

Wednesday, June 2, 2010

"Busy is as it isn’t that has not forgotten out OK"

Saturday, May 29, 2010

A typical day starts for me at 7:00 AM. That is when I start doing my bed exercises. These are strengthening exercises for the muscles in my legs and my arms. I still have pretty good control of the muscles in my hips and thighs; I can bring my knees together and push them out. I am a long way from being able to put any weight on them though. I need help for the exercises that require me to lift my knees or raise my feet.

Between 7:20 and seven thirty, Alex comes in after he's made his coffee, to help me with the exercises I can't do by myself. His support and his enthusiasm are invaluable. I need him to hold my ankles or lift my arms or steady my knees so I can do the exercises as completely as I can. The physical therapist as noted that my legs are showing improvement now and I have him to thank for that.

From 8 to 9, Adrienne comes in and we do my bed bath. The first thing she does is set me up on the edge of the bed. This is a tricky ballet move that we do together. My legs have to be positioned correctly before she starts to lift, half on, half off the bed. Then she puts her hands on my shoulders and I put my arms around her neck and she walks away, pulling me up.

When I am able to sit up in bed by myself, I'm going to go up to the Circle bar in uptown Oxford in and buy myself a shot of Laphroaig to celebrate. Laphroaig is a single malt scotch whisky that is bacon good.

I wash everything from the knees up, except my hair. Adrienne has to do the rest. The washing part happens pretty fast. What takes the longest is putting on these ridiculous, white, embolism hose. They are white stockings ago from my toes to my thighs. I call them my mantihose. I need to wear them during the day to help blood circulate through my legs. If I'm going to go outside I wear a pair of Crocs on my feet. I feel like a transvestite who favors sensible shoes.

From 9 to 10, I brush my teeth, shave, and eat breakfast. Usually Alex gets my bowl of cereal and banana and juice ready for me. Brushing my teeth consist of carefully unscrewing the cap from the tube of toothpaste with one hand while holding the tube flat on the edge of the sync with the other. Then I bring the toothbrush underneath the opening and push down that the knuckles of my other hand to squeeze out the toothpaste. Brushing is more about holding the toothbrush in place and maneuvering my head around it to get it done properly. Lately I've had to use both hands to hold the brush in my mouth.
Eating a bowl of cereal with butterfly strong hands has its own set of challenges. Even though I have a special spoon that's easy to grasp, maneuvering each spoonful of milk, cereal and fruit from the bowl to my mouth is as difficult as a Moon landing.

After breakfast Alex takes me outside so I can have my first cigarette of the day. Even though sometimes I dropped a cigarette, I still enjoy it as it is a choice I get to make about my body. But I know, since I chose to start smoking again when I got out of the hospital, that at some Point I'm going to have to choose to quit smoking again.

Then I go in and spend a half hour to 45 minutes doing my chair at exercises. These challenging exercises are to increase my strength and dexterity. Moving my hand from my knee to my ear or crossing my arms across my chest kills me. One exercise is particularly devastating; touching the tips of my fingers with my thumb. In the last week I've noticed it is increasingly difficult to touch my Pinkie finger.

Most days I'm so tired I go back to bed for a midmorning nap. Getting from one place to another, such as from the wheelchair to the bed, is done by using a transition board. This board goes under my buttocks and by using my arms and my hips, I slide from one place to another. Another person is required to move my feet as I move my body. The two biggest obstacles I face are gravity and my own fear. It is difficult to go between two unlevel surfaces. If it's uphill I need someone to pull me along by a gait belt.

My poor proprioception makes me feel vulnerable to falling. I have very little sense of my body in space when moving. If I'm sliding down the board, and my arm gives way, I'm afraid I won't stop until I hit the floor.

I try to get out of the house as often as I can. That may include sitting in the back yard or on the front porch or in the garage, if it's raining. My street is very pleasant and it's nice to watch people go by. I also have wonderful neighbors who may visit, visit with them in their yard. Adrienne and I often go for walks in the evening, when the heat cools. Of course she does all of the pushing, and is developing some pretty impressive biceps. Maybe by next summer she will be able to win the arm wrestling trophy she has always wanted.

I get a lot of mileage out of the voice recognition software on my computer. It is pretty accurate and beats typing. Occasionally it prints out gibberish that sounds like it should mean something. I use that and Skype to make phone calls. I can just read the numbers to the computer and say "Call!" and immediately be connected with the person I want to talk to.

Step by step, I am widening my world. It is been great to go back to church and my Wednesday night Ala-non meeting. Adrienne and I also had our first "date night" last Friday, at a local pizza place. We asked the waitress to take our picture because it was our first real date since we had "met on E harmony".