Continuity of Care

Monday, January 17, 2011 09:04:24 PM

We made it to church yesterday.  I kept falling asleep; at one point Adrienne woke me up because I began to snore...

I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.

I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty.  I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house.  I have had fifteen different therapists.

Do nothing 'til you hear from me

Friday, October 8, 2010

The topic of last Wednesday's Ala-non meeting was courage, as in courage to change, the name of one of the Ala-non daily devotional books. I know quite a bit about courage, or more exactly, the lack of courage; a few years ago, I would find myself gripped by fears about the uncertainty of the future. These episodes would cripple me, occupying my mind for hours. Going to meetings, reading the literature, and working with a sponsor helped me get through this difficult period. I learned several tools that helped me then and they are helping me now to deal with my CIDP.

The first tool is courage to let things go, to trust there are many problems that I’m not supposed to solve and that this is alright. I have to recognize that others have their Higher Power, who is leading them to discovery at their own pace, not mine.

Adrienne carried an unbearable burden while I was in the hospital and bedridden at home. Knowing she was doing all this hard work to help me was terrible. But I couldn't help her. Trying to do more than I was capable was not only a failure, but dangerous. I had to trust that she would see herself through this and we would both be alright.

The next tool is the courage to make mistakes. Trying something and failing was a sign of weakness and vulnerability. Therefore, it takes courage to try new things or things that I have failed at. If I stop trying new things because I am afraid of failing, I have stopped growing. I have had plenty of failures, but through God's grace, many of those failures have already turned into victories.

Writing is a good example of this; ever since I could write, I have taken great joy in using words on paper to express and communicate. I thought I was pretty good at it until it was explained to me that I wasn't as good as I thought. I could have worked to improve my skills, but instead I didn't write a thing for many years. I thought that if I couldn't be perfect, then I would be nothing.

I started writing in the hospital to pass time and help me process what was happening. I also hoped that people close to me would read it to get information about my condition. Publishing a couple of blog posts a month isn't going to make me a great writer, but it is making me a better writer.

Lastly, the courage to say I can't do it myself-I need help. Asking for help truly is a sign of strength.

While in the Drake Center, my roommate Steve and I were talking about how it felt to one day be healthy, then the next need so much help. “It's humbling,” he told me.

Humbling is right. I survived all sorts of things I never thought I would. But I didn't have to do it alone. God surrounded me with love and protection. To all the people who brought that to me, you were emissaries of God, carrying His message and doing His work for Him.

When faced with a situation where I would have responded by using unkind words, or tried to force my solution on others, or any other of my unsuccessful strategies, I pray to my Higher Power for guidance.

I seldom get a dramatic response; 99% of the time, I don't get any discernible response at all, so I do nothing. I keep my mouth shut and wait patiently for resolution to come from a different source, and it always comes.

When people want to talk about my recovery, I have to give credit where it is due and say, “God is good all the time.”

All the time, God is good.

Tuesday, October 12, 2010

Down by the lazy river

Monday, August 8, 2010

Adrienne and I went to swimming tonight at the fitness center on Miami's campus.

What a blast. Miami University has thoughtfully provided a chair lift that is easy to get on and off and is operated by the passenger, so I could control my own decent and ascent. In chest deep water, my legs will bear my body weight. Plus I can really swim, hold on to the wall and kick or bicycle my feet.

We walked inside the rim of the pool, sometimes I held the wall, sometimes I held Adrienne, others I was independent. When we got to the end, we smooched and went back.

The last time I was in a pool was at The Drake Center. I cried with joy because I felt almost normal. The water counter-acted the gravity that pressed me down the rest of the time. When I called them, my knees raised my feet towards my chest just like they were supposed to do.

I changed the "Overheard" box on the upper right corner of the pager, please let me know if you have any you would like to share.

Two steps forward and one step backward

Thursday, August 12, 2010

CIDP recovery isn't always in a straight line.

Forward, sometimes it happens just this fast:

I woke up a few nights ago because my right foot was moving. Up until that moment, I hadn't seen any recovery below my knees. Suddenly I can wiggle my toes again and push my foot up and down, like using a gas pedal.

I think it’s interesting that I found this out while I was asleep. Somehow my subconscious sent a letter to the conscious through the dream world. I was getting my feet back.

Along with the return of movement came sensation. For the first time since the onset of symptoms in March, I am in pain. My feet, ankles and calves buzz and tingle throughout the day and night. Every so often I get a jolt like an EMG shock. That hurts.

The other step forward has been the return of my hands. When I went back to the Drake Center for my follow-up visit, my grip strength was measured at less than one pound. The average TAB person's grip is around 80 pounds. Less than a week later my grip strength was nearly 10 pounds!

Zippers, button, and reclosable plastic bags were once again objects I could manipulate. I could also push the keys on my laptop's keyboard again, put things in my pockets, hold a wash cloth and soap, etc.

Backward, sometimes it takes a while:

My occupational therapist suggested that typing more would be an excellent way to improve my fine motor skills.

Although my hands have improved dramatically since June, typing is still a chore. In addition to the muscle loss, my hands and arms shake violently from the medications. Most of my July posts have been almost entirely picture or video content.

I thought I would be able to type full-time, but the constant stream of typos makes it hard for me to concentrate. And my hands get tired quickly. I found myself missing the voice recognition software that came with Windows Vista. It had been a great help to me.

I’m going geek out here for a few moments. The biggest problem with the voice recognition software is it requires the Windows Vista partition on my laptop. There’s no need go over the reasons why Vista was an unsuccessful operating system; most people have their own list anyway. Before I got sick I was learning to use an alternative to Windows, but had to stop for one important reason.

Whenever possible, I used the Ubuntu Linux partition on my laptop. Linux is an alternate operating system that is quite powerful, yet also light weight on the computer’s resources. What this means is that anything I want to do on Windows, I can do in Linux faster, more efficiently, and for free.

And it is also fun. There are some challenges, but I love problem solving and figuring out how to make things work. All the software is developed and given away by users, not for profit companies. So the programs can be a little quirky and help is a little more challenging to find. But since there is a community that works on the software, fixes and work arounds come fairly quickly.

But there is no voice recognition software for Ubuntu. I know a couple of projects being developed, but I didn’t find anything that I was smart enough to use successfully. Whenever I wanted to write, I had to go back to slow, buggy, forever updating itself Vista.

But I am able to compromise; I wrote most of this in Windows using the voice recognition software, then edited it by hand in Ubuntu, using the excellent (and free!) OpenOffice.org Writer program.

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.

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?

Forever

Monday, May 24, 2010

Yesterday, Sunday, was the first time I have felt normal since I returned from the hospital. I went to church, visited with friends, ate restaurant food, and just had a really good time. I didn't realize how oppressed I was feeling by my stay in the hospital. Feeling normal is the exception for now.

I've been home from Drake Hospital for over a week. It is been over a month since my last plasmapheresis treatment. Despite my ongoing physical therapy and occupational therapy, I'm still getting weaker. My arms and hands are growing less reliable everyday. Picking up or holding objects like my toothbrush or my cell phone is becoming increasingly difficult. My arms' range of motion is smaller every day.

I am becoming convinced that I have Chronic Inflammatory Demyelinating Polyneuropathy. Chronic Inflammatory DemyelinatingPolyneuropathy, or CIDP, is related to Guillain-Barre Syndrome. Both illnesses present in very similar ways; they are auto immune illnesses that attack the nerves, starting at the lower extremities and working up. CIDP requires additional treatment. Often steroids are prescribed, along with ongoing IVIG treatments (IVIG treatments are also very expensive. The ones I had a Jewish Hospital were over $10,000 apiece). Steroids are powerful, anti inflammatory medications that have very serious side effects.

It is now Wednesday. It's been taking me awhile to write this entry. I decided to start writing as a way of helping me deal with the changes that are happening in my life. However, life at home is pretty busy and loud. It is hard to find a quiet space work where I can set up my computer to dictate to during the day. Plus I am receiving occupational and physical therapy at home now. Add to that the 1 to 2 hours a day I spend doing exercises plus the 2 hours it takes to get out of bed and eat breakfast, that leaves not a lot of time to write.

I put my blog online and shared it with other people because I thought it would be a good way to keep other people informed. I quickly realized that to people who commented were keeping my spirits high. Your words of encouragement mean so much to me.

The most amazing thing that has happened since I got sick is the support Adrienne and I have received from other people. It really has been a blessing. I was trying to illustrate that by describing something that happened to me in church on Sunday, but I'm not sure I was able to get the point across. So I decided to address you, my dear readers, directly and tell you that no words could express our gratitude. Special gratitude for those who didn't just call or send a card, but came and worked to get the house ready, brought over a meal, dropped by to do errands, and donating items that we need. Is truly been an unexpected blessing. Every gesture, small or large, was its own miracle. Your efforts have been the voice of God reassuring me that I'm not alone.

Yesterday in church we sang Michael W Smith's Forever. The chorus assures us, "Forever God is faithful, forever God is strong, forever God is with us." I felt tears well up in my eyes. I didn't know if the words were assuring me or mocking me. I was feeling very scared because I knew I was not getting better. I could feel myself shrinking into this body size to prison, with no idea how long my sentence will be. Fears about my future overpowered me. Despair about my present shape pushed me further down.

How much lower, I wondered, do I have to go before this turns around? All I want is my life back. I miss being strong. I miss being independent. I miss being able to stand up.

During the Passing of The Peace, the congregation walks around the sanctuary and greets each other with a hand shake, wishing the peace of Christ on each other. I would always make sure to greet the people who couldn't walk. Today people came to me to remind me that I am part of the body of Christ and worthy of His love. They shook my hands and touched my shoulder, and said that they were praying for me.

God has not abandoned me. He has brought me to a place where I can see Him more clearly than ever. That was in the faces of those who shook my hands, touched my shoulder and told me that they were praying for me. This was God being faithful and strong with me.

I don't know what my future holds. I may never walk again or spend the rest of my life taking powerful drugs that will affect the way I look and feel and behave. Or, through lots of hard work, therapy, and patience, I will be restored. Only time will tell. The important thing and hard thing for me to remember is that I am OK, and I will continue to be OK.

Dark thoughts

Monday, May 3, 2010

Dark thoughts

I woke up Sunday morning in a deep depression. During the night I had come to the realization that my infirmity is going to last much longer than I thought. Recovery from Guillain Barre Syndrome is measured in months, maybe years.

Most troubling is how treacherous my body has become. The frustration of not being able to do simple things is great. So is the fear of falling. Sitting on the edge of the bed, and bending forward to touch my toes can be very exciting. I’m afraid my body will betray me further and surrender to the pull of gravity, causing me to crash to the floor.

Have you ever heard the joke about the man trapped on the roof of his house during a flood? He prays to God for salvation. Along comes a boat, then another a boat and a helicopter. Each time the man turns down their offers of help, saying that God will save him. When the man drowns and goes to Heaven he challenges God, saying “Why didn’t you help me when I prayed? “ And God replies “Help? I sent a boat, I sent a helicopter…”

Late in the evening on Saturday, I realized that I still had my shorts and my mantyhose hose on (very tight stockings I have to wear to prevent blood clots). I decided to take them off myself because I wanted to prove how independent I could be. After nearly 45 minutes all I’d succeeded in doing was getting myself tangled in my clothes. In my frustration, I muttered, “Please, Jesus!” No sooner had the words left my lips when my aide came in, asking if I needed any help.

A therapist explained to me that depression is part of the process of coming to terms with accepting the diagnosis of a severe illness or injury. There are four stages to go through. The final stage, instead of being called acceptance is redefinition or redefining. This is the stage where the patient redefines them self in terms of who they are now, not who they were.

And so I’m beginning to see that my illness is more severe than I thought. That is neither good nor bad thing. But it is something that I have to accept. However, I am still hoping for complete recovery. But as God showed me on Saturday night, He is still with me and is answering my prayers.

Writing this blog is been very helpful for me. Your feedback and responses have been even more helpful. What is also been very helpful is being in contact with other people with GBS. Curt has been a great source of support and information since I got sick. Please take a minute and check out his latest blog entry. It certainly filled me with hope today.

May is Guillain Barre Syndrome Awareness Month

What fresh and hell is this?

Wednesday, April 28

Today is my third day of therapy and my arms (and my legs and my butt) are tired. Last night was the first night I slept without a sleeping pill since I went to University Hospital on April 12.

So I am very tired. I’m also excited about the new things I’ve done. Yesterday, with the help of a machine, I was able to stand up. Not only did I stand up but I also did some exercises while standing. And this morning, I took an honest to God shower in a shower chair as part of my occupational therapy. It took me nearly 2 ½ hours to shower, get dressed, and do the rest of my morning routine. It very challenging, especially getting dressed in my chair.

I find it very hard to balance in a chair. Leaning too far frightens me. I also discovered that I don’t trust my arm strength any longer. This means that if I start to fall I might not be able to stop myself.

But I really loved taking a shower this morning. Brushing my teeth and shaving in the bathroom produced a feeling of euphoria in me. There’s a big difference in the way my face appears in the mirror when I’m sitting up and when in bed. My face is leaner, not so chubby like when I’m on my back.

In yesterday’s occupational therapy I lifted weights and threw a ball. These tasks were to increase my arm strength. And they quickly wore me out.

It is frustrating because there’s so little that I can do myself. In my heart I still feel like I should be able to walk or put my socks on. What I really want to do most is stand up and pull my pants and underwear up around my hips where they belong. I would also like to sleep on my side, touch my toes, throw something, use a toilet or sit down some where and not have to worry about how I am going to get back up.

All that stuff is beyond my reach. Doing things like adjusting my clothes or even getting dressed is difficult in bed where I’m flat on my back. Add the element of gravity by sitting me in a chair and they are almost impossible.

My greatest nemesis appears to be the bedside commode. I will not be walking when I leave the Drake Center. That means our house is going to require some modifications to make the house wheelchair accessible. Then we have to answer the question of how I’m going to clean myself and use the toilet from my wheelchair. One of the goals in front of me is to learn how to transfer from a wheelchair to a shower chair or a commode. Then I’m going to have to be able to pull my pants down. This will involve leaning. Leaning requires strength to support myself with my arms and that scares me.

In the Today’s Reminder from today’s Courage to Change, the author points out that fear is often a signal that there something we need to learn. All of this fear that I’ve been feeling today is because I have so much to learn.

Take the good news where ever you find it

I survived my first day of rehabilitation at the Drake Center. It was about an hour and a half of work. They are going to build me up to a total of 3 hours a day. The good news is that all my muscles are working fine, just weak.

I also set a goal for myself; when I leave here, I want to go home, not a skilled nursing facility.

It is time to do my exercises and then get cleaned up. I wish I had the words to tell you all how much I appreciate your thoughts, prayers, and comments. You truly are making a positive difference to me and it helps me so much.

The night before my first day of rehab

Sunday April 25 2010

I’m writing this from my new room at the Drake Center. The Drake Center is a very well known hospital that specializes in physical rehabilitation. My rehabilitation will start tomorrow, and from what I understand it should be challenging. I’m looking forward to it.

Wait a minute; am I really looking forward to it? Usually I run from challenges.

Since I moved here on Friday the staff has been encouraging me to think of myself as more independent. That means I spend a lot more time thinking about moving before I start moving. I have to pick a goal, and then visualize the steps I need to go through to achieve it.

What used to be a simple job, like taking off my shorts, can take several minutes as I check my environment for obstacles, and then use my hands to position my legs. Next I undo my shorts and rock my hips back and forth while pushing the waistband, little by little, over my hips. It is challenging to negotiate the shorts over my knees and to my feet. Getting the shorts off my feet is also tricky since it again involves using my hands to reposition my legs.

Once I have the shorts off, what do I do with them? I can't put them in the laundry hamper because it's across the room. For that I will need help. Should I ask for help now? Or should I wait until later? Since the idea is to be more independent, I choose the only thing I can do by myself right now. I fold them neatly and try to toss them onto a nearby chair. Lastly, I have to figure out how to get my knees back down. I am damp with sweat and my mind is frazzled.

By the time I finished taking my bath this morning, I stank of the sweat again. I'm also proud that I was able to do as much as I did.

I was able to go to an Al-anon on meeting today (the first in a long time). I talked about my fears and was reminded that this is a process that's going to take a while. I will be working with many people who are professionals at taking people in my condition and teaching them how to live strong and independent lives.

Another thing that bothers me is my whole question about believing in God. Do I really have the faith that I think I have? Or am I alone? I worry that my faith in God has more to do with my hope that He will tell me to pick up my pallet and walk and not be the long-term relationship and that I thought it was. It is easy to look back on something and say “Faith carried me through that.” But to look ahead and say “Faith will carry me through this” is scary.

A friend came to visit me this weekend and I confessed my doubts to her. She was quick to point out that this whole experience will radically change my relationship with God. I told her that she is a good friend. Especially now, when I am so needy.

Is being needy part of God’s plan for me to break me from this illusion of self reliance I have been cultivating all my life? People have told me that I’m a perfectionist. Often, if I can’t do something perfectly; I will not try. But now I don’t have that option. I have to go out and be imperfect and I am afraid I cannot do it by myself.