Some facts you should know about ALS.
ALS involves muscle weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control speech, swallowing and later breathing.
Approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time.
The life expectancy of an ALS patient averages about two to five years from the time of diagnosis.
There is no CURE!
For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.
No posts in over a month and now two in 24 hours...? I guess last night's post is just what I needed to get me going again. I feel like a phoenix rising from Arizona. Actually, if you remember last night's post, I said that I had a lot to say over the last month, but I just did not feel like saying it. I guess that now I'm back in my groove I feel like chatting. The month of September saw the beginning of the school year, a driving evaluation that was ordered by my neurologist, a quick trip to Boston, and of course a few falls. As I stated yesterday, the beginning of the school year did not bring the expected boost that I had hoped for. It has been an ongoing struggle to try and recapture my mojo. Of course, it was no help that on Friday, September 10, I had to go to the first part of a driving evaluation that was ordered by my neurologist. Because my arm and leg muscles have weekend, my neurologist ordered a driving evaluation back in July. I of course, experiencing a combination of fear and frustration, put off the evaluation for two months. During my last clinic visit in July my neurologist even went as far as to suggest that I was going to fail the evaluation. How is that for positive support? I immediately became angry at the thought of having to have this evaluation done. In all honesty, the biggest difficulty I have with driving is getting my key out of the ignition and occasionally getting my seatbelt on and off. It seems that once a week I hear a story of an older adult who has gone the wrong way down a one-way street, stepped on the gas instead of the brake, or blew through a stop sign. Every day I see people driving 10-15 mph under the speed limit and weaving in and out of lanes and making terms without using a single, but it is I who had to take a driving evaluation to determine if it was safe for me to be on the road. My anger only increased as I took the first portion of the driving evaluation, which consisted of a verbal test. I was subjected to questions like "what do you do when you come to a red light?" and "what do the flashing lights on a school bus mean?” Additionally, I had to draw lines connecting the numbers 1 to 13 in order and draw a picture of a clock with the numbers inside. Even the occupational therapist giving me the test had to continually apologize to me for the questions that she was forced to ask and admitted that she was giving me an abbreviated form of the evaluation. The scary thing though, was when the occupational therapist shared with me the results from other recent tests that she had given. Believe me, now, when I tell you that we should all be very afraid every time we get into a car because you would not believe the mindset of some people are out there on the road.
The second part of the test, the driving evaluation, which I returned the following Friday to complete, was almost just as stupid. Needless to say, I passed that portion as well. The only recommendation the occupational therapist is going to make was that I limit my driving to approximately 45 minutes to avoid fatigue in my arms. This recommendation was made based on the fact that after 45 minutes of "turn left.", "turn right.", "do K a turn", "make a circle to your left, make a circle to your right", so on and so forth, my arms began to tire. Just as they would for almost anyone who had to make continuous turns for 45 minutes. So what did I do about the therapist recommendations, you ask? Well, 10 days later I drove four hours straight to Springfield, Massachusetts where we spent the day at Six Flags New England. After spending four hours walking around the park (yes, I was able to do it), I drove another hour and a half to our hotel outside of Boston. After spending Monday walking around the Children's Museum of Boston and Tuesday morning seeing a Metabolic Specialist at the Children's Hospital of Boston for Sydney, I drove the full 5 1/2 hours back home from Boston. How was that for an F.U. to my neurologist and to the occupational therapist who made the recommendations? Of course, once we got home Tuesday night, my legs were so sore and fatigued that I ended up having a pretty bad fall walking to my front door, and that I needed to stay in bed for the next 36 hours since my legs were in severe pain and had almost no strength. Still, no regrets. After all, I was told not to drive because of my arms, not my legs.
Six Flags New England
Besides the fall, that I just previously mentioned, when we got home from Boston, there were several others during the month. Actually, it has gotten to the point where I have had so many minor falls; it's getting hard to remember them all. The problem hasn't been so much the falls, but the fact that I am no longer able to get myself up off the floor once I do fall. And even though Tracey does have freakish like strength (her words), it is becoming increasingly difficult for her to lift 225 pounds of dead weight off the floor. Typically, I will need a piece of furniture to push up against, in addition to Tracey's assistance, to get up after a fall. I had one minor fall in Boston, where a kind of slid off the sofa in our hotel room, as I was trying to get up. Additionally, it was in Boston, where I experienced my first toilet bowl dilemma, as I mentioned yesterday. You know it's true love when someone is there to help you get up off the can. The fall after we got home from Boston was probably the most dramatic since the one where I got my head stuck underneath the bed. This time, I had just gotten into the front door. When I lost my balance and started to fall backwards. Unfortunately, the door had not closed behind me yet, and when backwards, I came flying back out the door like a cowboy in an old Western movie, where they get punched out and fall backwards out of the swinging saloon doors. As I was falling backwards, I managed to get a partial hold of the doorknob, which did nothing more than spin me sideways. It was at this point that I fell over backwards over a chair that we have on our front porch. My head came to rest on top of a small garbage can that we use to keep the dog poop. Very unpleasant indeed. The fall, coupled with the extreme fatigue in my legs, following our trip to Boston and the five hour car ride, made it impossible for me to get up, even with Tracey's assistance. Somehow, I managed to get up onto the chair that I fell over and after about 10 minutes, Tracey was finally able to help me stand up. From there, I went straight to bed for the next 36 hours.
Children's Museum of Boston
The day before our trip to Boston, we held a bake sale at our local town festival, where we raised $365 for the ALS Wing Fighters. Although I did not do very much in the setting up or actual selling, I was there for the whole day, in the hot sun, to provide moral support. As I look back on this post, I guess I have a legitimate reason to be tired. We raised a lot of money in support of ALS, and I proved to myself, at least, I'm still capable of driving. Sydney and Emily had a great time at Six Flags New England. They loved going the children's Museum of Boston, they loved staying in the hotel, and most of all, they love sharing a room (Sydney said this was her favorite part). The second opinion that we received from the metabolic specialist was well worth the visit. Like I already said, no regrets.