Friday, February 02, 2007

My Little Hope Boy

One week ago marked two years since I was diagnosed with ALS. At that moment I was so upset and in shock all I could think about was ‘how could this happen to me?’ After I didn't get an answer from the doctors, the next question was ‘how long will I live?’ Again, no definite answer. Then a month after my diagnosis, I asked again and my extremely compassionate neurologist said ‘don’t worry too much right now, we’ll know more in a year.' Those words gave me hope that turned into strength. It wasn't long after, with the help of my wife, my mom and my sisters, I took a positive approach to my disease. Together, we set out to fight rather than giving in to this horrible disease.

My journey since then has been so unpredictable. Many people ask me how I'm doing. There are two ways to answer; mentally and physically. I try not to respond negatively. But first my mind focus's on my physical aspects. To be honest, last summer I thought by early 2007 (now) I wouldn't have use of my legs. But to my amazement, I can still stand up. I've never woken up in the morning and all of a sudden unable to do something that I could do the day before. Instead, I find it increasingly difficult to do my daily routine from one month to the next. Right at the moment, half way through my meal I totally lose strength in my hand and have to be fed. I don't even attempt rice or soup anymore because I end up wearing both of them. Without shoulder strength, it's difficult to lift anything. You can imagine how difficult it is to cover myself with a blanket at night. But my wife and I have learned how to adapt. She bought me a lightweight blanket and I wear silk pajamas so I don't get caught up in the blanket. Answering how I'm doing mentally is more complicated and varies depending on my stress level that day.

I also belong to a wonderful on-line support group created by the ALS Association, known as the ALS Advocacy Community. That forum has been an invaluable source of information. Membership is both PALS and caregivers. I'm convinced my strength comes from my positive family, supportive friends and the huge network of support provided by the ALS Association of Tennessee.

An example of this is the ALSA's Christmas Gift Program. The program is optional and allows members of a PALS family to submit their Christmas present 'wish list' to ALSA. Then ALSA joins the family up with a caring business in the Memphis area that wants to participate. We were blessed to have the Hudspeth Benefits Group as our host. This is a family run company offering employee benefits, insurance, mutual funds & retirement plans. They also have a heart of gold. Because of their generosity, our Christmas was better than we could ever imagine. Thank you to Bill Hudspeth's entire family. Lastly, a special thanks to Donna Climer and her husband, Wayne of C & C Techtronics for making all the arrangements!

Here are some of my experiences since the New Year:

  1. I had to retire my trusty computer trackball and replace it with a special joystick for typing words and navigating Windows. Some of you may wonder why. For me, the frustration of not being able to type is my main driver. I have spent the past 20 years in front of computer during most of my conscious hours of the day. I love personal computing so much, I consider home computing a hobby. It goes without saying, I'd rather stimulate my brain with a computer than have it turn into mush in front of the TV. As many of my PALS know, the Internet is like a life support system. Last summer, I had to retire my mouse because it got too heavy to pickup. Do you know how many times you lift your mouse each day? Anyway, with my trackball, it was my unwanted twitching of my thumb and fingers that did it in. I found that I unwillingly was left and right clicking my trackball buttons. I use these devices, as long as can, then I switch. There is the normal learning curve with the new device but in each case, I’m typing faster than before. Some of the speed comes from my word prediction software. After the joystick, my only option will be an eye gaze system. Eyeball to mouse is incredibly more effective than using a hand to mouse device. My insurance company won’t pay for assistive technology communication devices anymore, so I’m going have to pay the difference beyond what Medicare will pay. I'm taking action right now to obtain my eye gaze system. Wish me luck!
  2. To give my wife more relief from the daily caregiver chores, we now have a home health aid coming to bath and groom me seven days a week. I also continue to do physical therapy every other day to keep my arms and legs as limber as possible.
  3. Unfortunately, my voice is so weak it takes a special Dick Tracy Decoder Ring to translate the words I babble these days. Even my wife is having trouble understanding me. Please continue to keep me in the loop via email as I discover new ways to communicate.

  4. We are researching a lift. Fortunately, I can still get myself out of bed, but I’m not sure how much longer my arms will hold out. The Boy Scout Motto is ‘Be Prepared’! My wife wrote the book on that subject.

  5. A big reason to have hope is during my last doctor's visit, I found out the DNA study that I participated in last year was extremely successful. There's a slight chance the researchers might produce a clinical trial study that will target specific genes. Perhaps this summer.
Below is my 'hope' figurine that I received from the ALS Association. I love my little hope boy. He gives me hope everyday.

Which brings me to the next subject. Ever since I can remember, I've tried to live my life to the fullest knowing I could die tomorrow. Maybe that's why I love the great outdoors so much. Not just going for a walk in a park like a common city dweller. But really getting close to nature. Looking Mother Nature directly in the eye and shouting ‘Bring it on!’ Not to brag, but I'm proud to say I’m proficient in wilderness backpacking, downhill and cross-country skiing, rock climbing, rappelling, scuba diving, etc. All individual sports. I've played team sports and enjoy them. But there aren't that many team sports that I get fully charged from. I truly feel sorry for people who have spent their entire adult life and never experiencing the truly magnificent natural splendor that is right in our backyards and beyond.
As stated before, I've always been a quiet person and the way I recharge my battery is to turn inward. I can only do when there's no distractions. What I'm talking about is the feeling of pure tranquillity. I've experienced this tranquillity in my life only while being outside in the wilderness. Here's one example (more to come in the future, I have a few more):
One time I was scuba diving in Hawaii, in a protected underwater wilderness called Hanauma Bay. I was swimming in about 30 feet of water. I was astonished at the hundreds of fish swimming all around me. They were all shapes and sizes. What amazed me the most was their colors Every color of the rainbow was represented. Beautiful. It got better. I spotted an opening in the coral reef. Below me was a clearing made of perfectly white sand. I swam to it and the fish followed me. It didn't take me long to reach the underwater island of sand. I then turned over on my back and settled to the bottom. It was so cool watching my air bubbles rise to the sunny surface. I stayed down there as long as I safely could before returning to land. When times get tough, I sometimes return to that peaceful memory place in my mind.
And now a story about positive thinking ...

BANK ACCOUNT (I received this from a PALS of mine)

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight
o'clock, with his hair fashionably coifed and shaved perfectly, even though he is legally blind, moved to a nursing home today.

His wife of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready. As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

"I love it," he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

"Mr. Jones, you haven't seen the room; just wait."
"That doesn't have anything to do with it," he replied. "Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged ... it's how I arrange my mind. I already decided to love it.

"It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.

Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy
memories I've stored away just for this time in my life.

Old age is like a bank account. You withdraw from what you've put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

Thank you for your part in filling my "Memory Bank". I am still depositing.