I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Sunshine and Unicorns

Today is more than just a good day; the weather has been kind, permitting me to go about outside in the (semi) warm air and sunshine.  Plus, I have more energy than I've had in a long time. It is a great day. 

I picked up my ankle-foot orthotics yesterday.  I am still a little uncomfortable with them, but I know that is just until I get used to them.  They have been very helpful.  I had them on for about two hours today while I went grocery shopping and I was amazed at how much of a difference they make.

There was more that I wanted to share, but I am tired, so it is off to Napland.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

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.

Shaking my hips from side to side

Friday, December 17, 2010 01:58 PM

I don't remember the last time I learned to walk; after all, it was over 40 years ago. It is something I never thought I would forget, but after CIDP had it's way with my nerves and the ensuing muscle loss, here I am, a toddler at age 46. 

Moving a big body like mine upright, balanced on two small platforms requires plenty of strength and coordination. There is plenty of effort in each step.

The first step was waiting for the nerves to heal enough that they could activate the muscles, then I had to rebuild my strength.  Once I could start moving the muscles, the strength came back quickly.  

Not all the muslces are working properly yet. It is hard to keep my toes up while walking, which can trip me. I need to concentrate on flexing those muscles in my feet. And also pushing off with my foot in the graceful, heels off the floor first motion while bring my leg forward requires thought.

Next, my knees; I had to learn their rhythm for walking.   Sometimes the leg needs to be flexible, sometimes it needs to be rigid.  The knee  controls that.  I have to concentrate on which leg is straight and which leg is bent and make sure the knees are doing their part.  

The latest area has been my hips and pelvis.  My impulse is too move my hips up and down or side to side while throwing my legs in front of me.  For smooth walking, that area needs to be held level.  This give me better balance and helps support my upper body.

Typically, I can't keep up that level of concentration without something to lean on.  Otherwise I would fall forward on my moon face.

Put it all together and this is what goes on in my head for every step:  

1. I start from an upright position, both feet flat on the floor.
2. I bend at the knee of the one leg, lifting that foot, the heel to toe off the ground and swing that leg forward. I place that foot on the floor in front of me, planting it from heal to toe.
3. I push off from the trailing foot, raising it from the heal first. This pushing off allows my body to swing over the pivot point created in step two. Going up on my toes is very difficult for me to accomplish, my feet don't want to bend that way.
4. Keeping the second knee straight, I bend the knee of the first leg, planting that foot in front of me, heel first again.
5. Through out this process, I need to concentrate on keeping my hips level and my body in an upright position. Right now, my tendency is to lean my torso forward, adding to the precariousness of the process.

What do you think about while walking?

Tuesday, December 21, 2010 09:41 PM

Better all the time

In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.

I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.

The neurologist told us to keep an eye on my symptoms.  If there were any regression, we were to let her know immediately and resume treatment at the previous levels.  The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.

Today my physical therapist and my occupational therapist told me that I am continuing to get stronger!   Take that, CIDP!

Presently I am spending more time on my feet than in my chair.  I walk around the house with a cane or steady myself with what ever is handy.  Lately, I've taken to using the cane outside the house, leaving the chair at home.  When I am tired or feel like I can't trust my legs, I get back in it.  Fatigue is still a concern;  when I get tired, I am done.

Besides the fatigue, my hands and legs are coming along nicely.  The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing.  Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs.  Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.

Today I spent some time sitting on a large ball, practicing my balance in my upper body.  It is much harder than it looks.  Luckily I had my ever vigilant PT to help keep me from falling.

My feet are my largest problem area right now.  I have to watch them constantly  while walking, otherwise I tend to drag my toes.  I could easily trip over my own feet!

I have to admit it is getting better.

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.

End of Summer, 2010

The Miami students are back to classes and hopefully we have seen the last of this summer’s “fry an egg on the sidewalk” heat. I’ve come very far since March; I watched spring turn to summer paralyzed in a hospital bed and now I am walking around the house with a walker!

My most vivid memories of the summer are of Mercedes standing by my side, clapping her hands and chanting “Go! Grandpa go!” while I shifted my weight from the chair on and off a transfer board. Now I make my transfers by standing up and moving my feet, then sitting. I couldn’t pick her up when she arrived, but before she left, we could play airplane.

I also remember that God has also surrounded me with a loving support group and family who carried us through these hard months.

The doctors and therapists who have aiding my recovery have all been to notch.

A large chunk of my family, some of whom I haven’t seen in years, made the trip to Oxford to visit us. My brother Bob and his wife Mary Carol came to visit last week, their two oldest sons were here the week before. My Sister Neli and her husband Nate also visited. And of course my Brother Jim, who was able to stay with me for nearly a week this summer, was a tremendous blessing. Plus there have been nieces and nephews, and friends from so long ago who have dropped by, called or written.

Then there are my new friends. People like Niki and Jeannie J. who gave their time to help Adrienne and me, the friends who helped get the house ready and all the people who are carrying us in prayer.

Friends like Steve and Duane, who gave us such amazing gifts to us that we will treasure for years. I have no idea how to respond to such generosity. My brother was moved to tears when he heard about the generosity.

Last week while doing my circuit around the park a stranger who appeared to know me quite intimately stopped me to talk. He appeared to know me pretty intimately, but I couldn't place him. It was my doctor, I discovered the next week.

It turns out that I haven't really lost all the weight I thought I did. When I was at the hospital on Wednesday, my weight was 239 pounds, at 25 pound increase from two weeks ago.

I have felt pretty distracted and withdrawn for the last week. Most difficult has been day-to-day maintenance tasks such as scheduling my rides to the hospital or ordering medications. Talking on the phone or trying to make plans about the future has been exhausting. I haven’t been to an Ala-non meeting in over two weeks because I just don’t want to talk to people now. That is also why I’ve been staying off of Facebook, e-mail, or writing my blog.

I spent a lot of time in my room, watching old horror and science fiction movies on YouTube and Hulu. I just can’t get enough of movies with titles like Astro Zombies or Battle between the Planets. Many of these movies were staples of my Friday nights and Saturday afternoons in front of the television. I hope someday to write more about these movies in an informed and eloquent style like this blog, devoted entirely to films of the 1960s. The author also writes a blog for Turner Classic Movies, which I’m sure is wonderful but I haven't been able to follow it since I got sick.

I believe it is the new medications I’ve been taking to help with my steroid rage. My memory of taking anti depressants is that they made me feel disassociated. I will admit that they’re helping, but the problem has not gone away. This week I started taking a third anti depressants/mood disorder drug. Hopefully that will help before I lash out at someone who will punch me in the nose, wheelchair or not.

Other than my reticence about contact, things have gone very well. I am continuing to improve at a miraculous rate. God has been very good to me by speeding my recovery. Today I got up from a chair in the living room and walked out to the mailbox and back. Take that, CIDP!

God loves me as I am, imperfect and incomplete. I know he has a plan for me, Adrienne, and Natasha and Mercedes. It is hard not to worry about them because they are so far away.

August Update

Monday, August 16th 2010

I had my August neurology visit today on the heels of my most recent IVIG treatments. Even though the explosive improvements June and July weren't there this time, I am continuing to make good progress.

My neurologist feels it is time to switch to a maintenance treatment program:

• Instead of getting a week long IVIG course, I’m going to get one a week and see how I do.

• I’m going to continue to cut back on my prednisone, five milligrams every two weeks until I get down to 50 milligrams a day. This will help with the side effects. If I’m able to go down on the prednisone, I could go off one of my anti-depressants. While the anti-depressant helped with the steroid induced mood swings, it is had its own set of side effects.

• She is concerned about my weight loss. I’ve lost over 70 pounds since I first went into the hospital in March. I was expected to gain weight as a side effect of the medications. She suggested I try eating more.

• I’m okay with that.

• The best news of the day is that I no longer have to wear my cursed mantihose during the day. Because my legs are much more active than they have been I don’t have to wear my mantihose. She suggested I switch to knee-high mantihose, but I don’t see that happening. Because I’m not going to be wearing the thrombosis hose any longer, I need to increase the amount of activity in my lower legs. To celebrate that, while doing my evening lap tonight I spend a significant portion using my feet to propel my wheelchair. My calves are tingling, not unpleasantly. I assume the feeling is from blood being pumped through tissue that has been largely unused in recent months.

• Also to help prevent blood clots, I’m going to start taking a baby aspirin every day.

Of course the switch to maintenance is a little scary to me. My brain immediately jumped to, "What if I get sick again?" My physician said to call her immediately if I start showing any symptoms. The solution would be to go back to my five times a month IVIG treatments. Of course with CIDP, nothing is certain.

I also had my monthly physical therapy assessment this morning. My PT was properly amazed at how much progress I’ve made in a month. "Last time I saw you," she said, "you were nearly paralyzed." That was the first time anyone had used paralyzed in reference to me.

Once again my “ glass half empty” world view kept me preoccupied with how bad things could really be. That is some serious stuff, being paralyzed. The most unfortunate people are paralyzed. Is that me?

I am still getting stronger every day. Insurance is taking care of medical bills. I just got a new (hand crafted by a friend) table so I can use my computer anywhere in my wheelchair. I had lunch today in uptown Oxford, outside where I could watch the returning students.

And I didn't have to wear my mantihose.

Pause

Wednesday, August 4, 2010

I feel like a new person. I'm not sure who that is but his life is very full and active. My house is also full and active with my granddaughter running around, Alex and Adrienne working on their projects, and this week my mother in law, Lola is visiting.

I love sharing my house with my granddaughter. She is a constant source of joy to me, and noise. For the last day she has been sharing things with grandpa. If Nana gives her a cookie, she brings it to me and offers me a bite. Of course reciprocation is the downside to this; if I have something she wants she just takes it off my plate. Indulgence is the first role for grandfathers, so I am happy to let her have her pick.

My physical recovery is still progressing rapidly. I am certain that I will be able to stand on my own soon, walking independently can't be far behind. I hope.

CIDP is a very serious illness. I have the attitude that I am lucky, my symptoms have retreated and my body is well on the way to mending. A quick look at some CIDP discussion forums on the Internet last night reminded me of how unpredictable this sickness is. Severe recurrences are not unheard of, sometimes the illness develops a tolerance for its treatment drugs. More than once I've read someone who went to sleep fine and woke up paralyzed, unable to talk.

The next phase of my recovery is to figure out the minimum amount of medication I need.

And I'm continuing to redefine myself now that I left my Able Bodied Person status behind. With the help of friends, I'm continuing to expand my world by spending time outside the house without my family present. Last week I reached a milestone when I returned to the coffee shop where I had spent many happy hours, drinking strong coffee and playing on my computer.

My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

Adrienne

Wednesday May 5, 2010

I made a mistake when I wrote about the fourth stage of dealing with trauma. People who've experienced traumatic events such as a bout of illness or an accident go through four distinct periods or stages. The fourth phase is often referred to as realization or coping. I called it redefining.

Those who know me have heard this before; one of the things that I love most about my wife Adrienne is her ability to make a plan and see it through. When she was a young woman she decided to have her family first and then, when the kids were older, go back to school and get a Ph.D. When the kids were nearly done with high school, she started her master's program. She earned her degree while continuing to work full time for the state of Vermont. It nearly killed her.

She decided that she would not be able to work if she was going to get her doctorate. Another one Adrienne's talents is her ability to find money. She found a good associate ship at Miami University, in Oxford Ohio. Coincidentally this is my alma mater (Go 'Skins!).

She didn't want to go alone. She wanted me there. Typically, she had a plan; sell our home in Vermont, move to Ohio, buy a house that we would sell when she got her degree and we moved to the college or university where she would start teaching. I am not a long distance relationship type person, and didn't totally love my job at that time; it made perfect sense to me.

We moved to Ohio in 2006 when she started at Miami University. Four years later she has finished her classes and is writing her dissertation. Instead of trying to sell our house, she is working on getting the house ready for my return. Instead of working full time on her dissertation, she now has to work on the huge amount of paperwork that goes with having somebody become disabled in midlife. Instead of looking for a teaching position at another university, she's trying to figure out how we will survive financially for the next three months. I am not earning any money right now and her income is about to become a greatly reduced. In August, she may be able to take a one year visiting professor position at Miami, provided she is a professor at that time.

But no matter what's on her plate, she tells me that her greatest priority is going to see me and spending time with me in the hospital. We have been married for 14 years and this is the longest we have been apart. Like all married couples we're seeing good times and we've seen Roth rocky times. No matter what, we've always been able to hold hands, look of each other and laughed about our situation. Our partnership has been a true blessing.

My illness and recovery is one of the greatest challenges we've had to face. But for once we can't face it as partners. I need to lean on her and trust her to do the things that I can't do. I need to make the most from my rehabilitation and it occupies me from the time I wake up until I go to sleep at night. It's difficult to see how hard she has to work because of me. I know that it must be taking a toll on her mentally and physically but she tries to keep it from me.

It hurts to see someone you love in so much pain. The fact that I am the source of much of that suffering makes it even worse. The truth is there's little I can do to help her or to relieve her difficulties. Right now, all I can do is work on getting better, learning how to live with my weakened arms and legs. I'm totally consumed by relearning the things that I used to do without even thinking; bathing, getting dressed and moving from my bed to a chair, opening my own milk cartons. I have to rely on her and trust her that she will find the tools that she needs to do the jobs in front of her. It is hard. It is not fair.

Fortunately Adrienne has her own Higher Power who can do what I can't.

I found this passage underlined in my copy of Courage to Change, "By admitting I am powerless, I make room for the possibility that a power greater than myself can do all those things that are beyond my reach. In other words I begin to learn about what is, and is not, my responsibility. As this becomes clear, I am better able to do my part, for myself and for others, and better able to ask God to do the rest."

When we pray for people who are going through hard times, we also pray for their families, asking God to surround them with angels and give them the strength to carry through the difficult times.

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.