Sunday, October 29, 2006

My Two Year Mark

This past Friday night was a near perfect evening. Hing drove the four of us in our van during rush hour to the Memphis airport to pickup my Mom. We arrived safely and while Hing and Nicole waited in baggage claim, Chris and I went searching for Grandma. That's when things started to click. We got on the elevator to go upstairs and guess who's waiting at the door? Grandma! Next we got all her luggage and exited the airport without having to pay for parking (under 30 minute rule). With all the money we saved (ha, ha) we then took Grandma out to dinner. The kids love 'On The Boarder's' salsa and chips so we went there. The meal and service was excellent. Nicole (our picky eater) ate everything on her plate and asked for more announcing she love Mexican food. Even when I had to go to the restroom, Chris took me, open doors, stood guard outside the handicap stall because my door wouldn't close. He even came to my rescue in helping me wash my hands. Trust me, rarely I will find the soap dispensers within wheelchair reach. Later at home, I managed to lift myself out my chair to a standing position and called my Mom over and surprised her with a big welcoming hug and kiss. What a wonderful start to a much anticipated week long 'Grandma Taylor' visit from Colorado.

It's now been two years since I went the doctor thinking I had a chemical imbalance in my body. I was concerned but not worried. After all, modern medicine can fix just about anything - right? I'm convinced that's the reason why my family is glued to the TV set every Tuesday to watch the next exciting episode of 'House'. Naturally, I wish Dr. House would do his magic on me. Now a days I'm taking this ALS thing each day as it comes. Unlike others with ALS, this chapter in my life doesn't get me down. As long as I can communicate, I'm OK mentally. But I'm entering into into a phase where I'm losing my arms and hands faster than my legs. Bummer. The good news is my insurance company has allowed a physical therapist to torture me twice a week for the past month. It's helping me stay limber.

Hing, the kids and I totally enjoyed my retirement party from FedEx last month. It was nice to see everyone. It turned out to be a party of 27 close friends from both FedEx and our family. At the party we were presented with a check. We certainly were pleased with the outcome of the Don Taylor Fund raiser. Charles Hawk, Russ Johnson, Jim Sheats, Cindy Dewy Tom Walker (to name few) did a lot and we're very grateful. I wish the donations were not anonymous so I could thank people directly. So here's a big . . .

. . . designed by Nicole. And we certainly appreciate the kind words that were said after dinner by our friends, Dawn Bennett and Brian Brown.

My typing is very slow these days, I'm using a special program that has an on-screen keyboard with word prediction since I type with my trackball that Russ Johnson and the AOD Tech Support team bought for me. I can't type with my PC keyboard anymore. My left hand is pretty much a club now. I've been working on this email on and off all week. Adaptation is the key to my success. I turn on my computer with my toe. I open doors with my foot. Thank goodness I can still bring myself to a standing position. Hing is still my primary caretaker and doing a great job. We gain strength from each other. However, I've reached the point where we needed to bring a nurse to our home to bath, groom, and it feed me. We noticed that Hing was trying to work her job, cook the meals, help with homework, do the shopping, and take care of me. My lack of strength and coordination in my hands and arms has made me into a very demanding person. So Monday through Friday I get showered and groomed by a home health aid since I can no longer do it. A person in my situation no longer can afford to be shy, now it's about survival and at the same time making sure my wife doesn't go crazy or go off the deep end of the pool. My nurse is very nice, she has 20 years of experience as a home health aid.
Back in July, I was be fitted for a BiPap device to assist my nighttime breathing. My ability to take a good breath of air decreased by 50% since this time last year. The machine forces air into my lungs with each breath. It's a fatigue fighting machine. To this day, I still can't wear the device all night long. So I recently changed from a nose snorkel to a full face mask. Perhaps that will help. Also, my machine has a heater which is great this time of year. My son, Chris has been very patient with me lately, especially when I ask him to put on my mask and take my picture.

The big thing at the moment is we just approved for social security benefits and Medicare. A very time consuming process. It's all done on-line (via a secure .gov web site), nicely done. My life story is now on a government database server. Why does the thought of that bother me? The good news is they, by law, put me at the top of the list.
Last month we hosted the BBQ ALS support group meeting at our home. As some of you know we live on a cove so when 30 PALS and CALS attended, it turned into a block party. We had 4 PALS in wheelchairs. You can imagine how busy it was. One of our PALS, Rick (seated in a blue shirt), from Mississippi smoked ribs and chicken. Ummm good.
One of the main reason for hosting was to show everyone our new addition to our home. We had a master bedroom and handicap bathroom put in. We learned some do's and dont's that we wanted to share. I also demonstrated my newly completed voice synthesizer project.
As I stated in my previous Blog, it's important turn my focus outward, like helping fellow PALS, getting involved with ALS advocacy movement, reconnecting with long lost New Jersey friends via the Internet and continuing to be active as an assistant scoutmaster in my son's Boy Scout troop. And I'm REALLY looking forward to a visit by my two sisters and my niece coming to Memphis next week in time for the ALSA Walk to D-Feet ALS on Nov. 4th.
Lastly, can you tell which one is the University of Memphis Tiger fan?