Post 11 - Taking the Good with the Bad

In an attempt to give everyone some insight to what I and my family are going through I had the idea, with the encouragement of some family and friends, to start this blog.  Over the past five weeks I have attempted to be honest and forthright in what I was feeling and experiencing.  Although life with ALS is quite challenging and at times downright disheartening, I am afraid that my blog may have given some people the wrong impression. There are many benefits to being diagnosed with ALS. Some I will share with you now. In no particular order:

• Medical Marijuana                    

               FAQs on N.J. Legislature-approved bill that would legalize medical marijuana

              Amyotrophic lateral sclerosis: delayed disease progression in mice by treatment with a cannabinoid.

Although I must confess, and this is the absolute truth, I have never experimented with marijuana.  In fact, I have never even had a drag from a cigarette.  (I do admit, however, that I may have tried that beer thing a couple times or so).  As you can imagine, I have done a lot of research on ALS and treatment methods, and in all honesty, I have found a lot of research demonstrating possible positive benefits of marijuana and neuromuscular diseases.  Once the law in New Jersey takes effect, this will be a course of treatment I will give some serious consideration to.

• I have not changed a diaper in over two years

I have not had the strength to lift my daughters onto a changing table nor do I possess the manual dexterity to change a diaper.  A benefit for me, but certainly not for Tracey.

• Guaranteed, preferred parking almost everywhere I go

You've got to love that handicap tag!  Actually, I had the tag for about four months before I actually used it and even then it was only in bad weather.  Now, unfortunately, I use it almost all of the time.

• I am encouraged to drink red wine 

             Lyophilized red wine administration prolongs survival in an animal model of amyotrophic lateral sclerosis

If the vodka and gin and tonic trials fail, I can always move on to read wine. I am sure Tracey would appreciate another trip back to Napa Valley.

•  I am never asked, nor expected, to clear my plates from the table or to fill or empty the dishwasher 

It's all I can do to get myself up from the table, let alone carry some dishes or glasses. The only way I can carry a plate is by using both hands, and with my arms fully extended down to my waist. I am unable to lift a plate or a glass higher than chest level.  At the rate it would take me to clear the table or fill the dishwasher after dinner, Tracey would be serving breakfast.  Another benefit for me, but again, not necessarily for Tracey. 

•  Sleeping 10 or more hours a day is considered normal and encouraged by my doctor 

It is not uncommon for myself or others with ALS to sleep at 10 or more hours a day. On some weekends, where I have been very active over the course of the previous week, I have slept for 12 to 14 hours a day. Typically, on a Monday morning, when someone asks what I did over the weekend, I will respond "sleep". Often, I am not joking.

• My doctor's suggested course of treatment is to sit on the couch, eat potato chips, and watch TV

              High Polyunsaturated Fat And Vitamin E Intake May Halve Motor Neurone Disease Risk

                High Cholesterol Levels May Benefit ALS Patients, Study Suggests

 My treatment team at University of Pennsylvania Hospital is consistently telling me I need to take it easy, rest and not exert myself. I hear this recommendation in one form or fashion during every visit.  My typical response is that I am not going to sit on the couch and eat potato chips and watch TV. Inevitably, whether it be the neurologist, the occupational therapist, the physical therapist, clinical nurse, social worker, the psychiatric nurse or any other flunky they may have poking and prodding me on that day, they will tell me that that is exactly what I should be doing. Not gonna happen!  I have increased my intake of milk shakes and Oreo cookies, and I do take vitamin E and omega-3 on a daily basis, just in case there is something to that high fat, high cholesterol thing.

•  Nobody questions or complains when I take forever in the bathroom

Actually, I would like to blame this one on the ALS but the bathroom has always been my favorite room in the house (sorry if that's a little too much information). Nowadays, it does take me a bit longer than usual to get myself together, after using the bathroom. Sometimes, depending on my level of fatigue, just washing my hands can be a chore and brushing my teeth can be a prolonged process.  I can even begin to describe the difficulties I have with showering since I have limited use of my left arm and I can no longer lift either of my hands above my shoulders.

•  I, and my family, are able to walk right on, or get immediate preferred seating, to any ride or show at theme parks, such as Disney World. (I am making myself available for rental for anyone who would like to take me on their trip) 

I have to admit, the ALS was worth its weight in gold when the family went to Disney World last winter. We didn't miss a ride or a show. The longest we had to wait for anything was about 10 minutes. The highlight for my daughters and for me, was when we bypassed the one hour wait at Ariel's Grotto and walked right up to meet her before it even opened up. (Sydney's favorite is Ariel and if you ask her what she wants to be when she grows up, she would tell you a mermaid.  Notice in the picture below that she has her little mermaid jacket and shirt on)  We were in there for about five minutes taking pictures and getting autographs, while Ariel talked with both Sydney and Emily and gave them (sadly, not me) plenty of hugs and kisses. To see the looks on their faces ALMOST made it worth it to have ALS. It is a moment, I will never forget!