About Me

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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.

Wednesday, March 9, 2011

Post 17 - Back in the Pool

Okay, I must admit, I may be a little bit rusty at this. My New Year's resolutions, of which I had two, were for me to start blogging again and to stop procrastinating. I never was any good at making New Year's resolutions. After a quick review of my last post shows that it has been almost 5 months since I last posted on my blog. Over the past five months several people have asked about my blog and I have never been able to give a clear-cut answer as to why I had stopped posting. To tell you the truth, I'm not really sure. They were definitely several factors, but since I am obviously blogging again, the reasons are now moot. I will attempt to provide an update and a quick synopsis of the last five months. Starting with the update, as my neurologist would tell you, I'm still breathing and still swallowing, so therefore, everything is great. I, of course, do not entirely share that point of view. I am now unable to lift either of my arms, although I still have some strength in my right arm. My left arm and hand are almost entirely unusable (remember, I am left-handed.). I am no longer able to hold a pen or use any cutlery with my left hand. I am able to use my right hand to hold a fork or spoon. But after two or three trips to the mouth, my arm fatigues, and I need to rest before continuing. Driving is another area that is proving to be continually difficult. Actually, driving is the least of the problem. The greatest difficulties that I face is getting in and out of the car, getting my seatbelt on and off, closing the door (I can't reach out with my left arm), getting the car in gear, and getting the key in and out of the ignition. Except for all of that, driving is a cinch. Actually, I do experience some difficulty backing out of parking spots, but really, that is all. The problem is, once I work my way through all of the difficulties, I am literally completely exhausted. Usually, I will sit in the car for several minutes just to catch my breath and to psych myself up to face the next endeavor. Also, with regard to my hand strength and fine motor skills, I can only use my right hand to type, and even that is somewhat difficult. Therefore, I am almost completely reliant on my speech to text software, so please continue to ignore any spelling or grammatical errors that you may come across. I do my best to proofread that I don't always catch all of the mistakes.
As you may have guessed, since I am still driving, I am still working. Just like anybody else, I experience my good days as well as my bad. I try and do as much for my office as possible since it has become quite difficult for me to get out and visit schools. This has been one of the toughest things for me to accept since I have questioned my own effectiveness as a supervisor because of my limitations. Additionally, being in the schools and visiting with teachers, and especially students, has always been my favorite part of the job and my escape, whenever I needed a break.

Since I have covered the breathing, swallowing, and the arms, I guess it's time for me to talk about the legs. Last month, I went for my wheelchair assessment, which is an evaluation to judge my suitability for a wheelchair. This was something that I knew was inevitably going to happen and yet somewhere deep down inside, believed that it would not happen. This assessment brought about two ironic and somewhat disappointing twist of fate. First, after ignoring the recommendations from almost all of the members of my care team (neurologist, social worker, occupational therapists, physical therapists, clinical nurse, psychiatric nurse) at the University of Pennsylvania hospital for the past year and a half regarding the use of a wheelchair, I finally caved in and decided to go. When I walked into the evaluation room, the therapist took one look at me, and with a scared look in his eye, declared that insurance would never approve me for a wheelchair. I'm thinking, if they are not going to approve me now, how in the hell were they going to approve me over 16 months ago. Needless to say, I had the evaluation done and I was recommended for a power wheelchair. At this point, we are now waiting for the insurance company to deny it is so my doctor can appeal their decision, which I am told is then approved 99% of the time. When I tried out the loner wheelchair as part of the evaluation, I was excited to see that it had a little horn. I thought to myself, "that may be fun" and thought immediately of George Costanza. Unfortunately, the representative from the wheelchair company, who was also present at the evaluation, informed me that insurance will not pay for the horn. As it turns out, the wheelchair is going to run around $40,000. Of course, the price is marked up considerably, because insurance will only pay for about half of the cost. My out of pocket co-pay is expected to be around $4000, with the wheelchair company eating the rest. But, as I said, the price is marked up to account for the limited insurance reimbursement, so really the only person with any out-of-pocket expense will be me. I can't begin to tell you how much I hate insurance companies. I'll save that for another blog.

In addition to the wheelchair evaluation, about two weeks ago we had someone out at the house to do a wheelchair ramp evaluation. There really is no point having a wheelchair, unless I can get in and out of the house. Luckily, the Philadelphia chapter ALS Association has been very helpful in facilitating the process and will even be covering the cost of the ramp. In case you were wondering where the money went, that we raised from the ALS walk, here it is. Thank you all once again, who donated, raised funds, and walked with me.

The last piece of this puzzle will be a modified vehicle that can accommodate a power wheelchair. Unfortunately, I have come to find out that insurance will not cover the cost of a vehicle, or the cost to modify our current vehicle. This may turn out to be upwards of $20,000 as well.

Getting back to my legs, it seems as though the weakness has progressed faster than I expected. Of course, it may only be my imagination. I could maybe walk 35 to 50 feet without my leg braces before I was to become too fatigued or lose my balance. Even with my leg braces, my walking is quite limited, and I still have significant balance issues. I can still go down steps, provided that there is a hand rail and/or I have some assistance. At most, I can probably go up two or three steps, but I would need someone to assist me. And this is all with my leg braces on. Overall, my balance is quite unsteady, and I have had numerous falls over the past several months, with the most recent ones occurring this past Tuesday morning and Monday evening. Luckily, they have not done much damage except for a few bumps and bruises.

The other great difficulty that I'm experiencing due to my leg weakness is the ability to get up from a seated position. Therefore, as Hanukkah/Christmas gift, we purchased a lift chair, which assists me in standing up. Otherwise, I need to be very selective in the type of chair I sit in if I plan on standing up under my own power.

Looking back over what I have written today, it seems a lot longer than what I had intended to write, therefore, I will spare you the synopsis of the past five months and save that for another day. Regardless of the doom and gloom I may have portrayed above, I am still feeling more optimistic on the whole that in some way, shape or form, I will beat this thing. For the most part, my family and friends have been terrific and it is because of their support and encouragement that I'm able to go on like I do. I can't even put into words how terrific Tracey has been in dealing with me and the entire situation. Even Sydney is beginning to rise to the occasion, which makes me so proud. You know, now that I think about it, I do have a lot to write about.

1 comment:

  1. Very excited to see you posting!!

    Sounds like you have quite a bit to keep posting on. Your fans are anxiously waiting!!