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.

Old Lessons

Sunday, August 15, 2010

Today during his sermon, Pastor Logan asked us to think of someone who would had been a spiritual influence. I immediately thought of Paul, a neighbor from Norwalk with a son the same age as me. He would drive us to school in the mornings. More than once, when I came over, he would be sitting at the breakfast table, reading his Bible with this breakfast dishes scattered around him.

Paul was the first person I had ever seen, besides our church pastors, who sought to continue his relationship with God beyond church on Sunday morning. Paul and I never talked about our faith, but by doing his daily devotion, he had a profound effect on me.

Logan asked us to name some of these people. During the congregational prayer, those names were read back and we thanked God for their witness. We asked God to “ grant us Your mercy to live by the same strength.”

I am grateful to God for my health, my wealth, and the support of friends, family, and fellowship. I pray for knowledge of His will and the strength to carry it out.

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.

Family Pictures

A very nice group of portraits taken by local photographer Steve Douglas while my mother in law was visiting (and my step son and my grand daughter).

I return to work

Friday, August 6, 2010

I went back to work yesterday. I didn't go back to work work, I went back to take part in a celebration.

My job was to teach computer classes in the senior center at the Mayerson Jewish Community Center and to coordinate a volunteer run telephone assurance program.

Both my programs are funded by a grant from the Mayerson Foundation. Once a year we would have a special luncheon to thank the Mayerson's for their generosity and to show what we had accomplished in the last year. Click on the picture below to see a Picasa web album from yesterday.

This was the first time I had been back since March 19, the day I went into the emergency room. It was also the first time many of these people have seen me since I got sick.

The senior adults and fellow staff members swarmed me, giving me hugs and kisses and tears of joy to see me again.

I was reluctant to let go of the people I was hugging. Being physically close to them was an intense reminder of how much comfort they are to me. They have been lifting me up with their prayers, well wishes, cards and letters, whatever they had to offer since I left.

Once again, I'm left speechless by the generosity of the people in my life.

It was a physically and emotionally exhausting day. It was a pointed reminder of how far I have come (and how I got here) and there is still a ways to go.

When I got home I went right to bed and stayed there until 10 o'clock today.

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.