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MY WEIGH LIVING W/ MMN
AN EXPERIMENTAL RESEARCH STUDY
BY: Harold Joseph Morales

Finally, I'm feeling sleep deprived. Going on 48 hours now wide awake in this misery, kinda funny being that I’ve been eating Percocet like m&m candies over the last 3 days in an attempt to mask the pain of this God forsaken broken heart.  I’m ready to crash now...  It’s probably due to the glass of wine I sucked down through a straw like it was the last sense of real relief in sight.  I couldn’t help myself. I was sitting there with the one who holds the keys to end all this suffering.  The most amazing person to ever touch my life and my soul. She had been my every-thing since we first met.  I could see her dangling them, the keys, gleaming, set deep into her beautiful blue eyes from across the room.  I simply couldn’t reach up and grab them the way that I use to.  They were set behind an impenetrable force field of a newfound awareness and reach for adventure.  Hence, my uncontrollable torment defined by my loss, of her eternal-ever-lasting love. | | Patience for Asylum © 2009

Of all the positions I've held in my life - ing disabled is most definatly the Worst and the Best of them all...

My elusive diagnosis of MMN, which I acquired in late Fall of 1985 didn't come about until mid 1997. The end result of my own painstaken research of neuromuscular diseases from a 13-month time span over a 19kb Internet connection. I finally arrived at a web page written by Dr. Pestronk, Washington University School of Medicine St. Louis, MO... that fit my profile to a tee. Putting a name on my condition was rewarding but for the most part in my case, considerably delusional regarding treatment. By the time of my discovery I was labeled a 'Jerry's Kid', the damage had already long been done, both physically and psychologically. Diagnosis of MMN has been a mystery up into the last 20 years but for a few elite doctors. It wasn't until 2000 that I was able to begin treatments with IVIG and Rituxam that ultimately have kept me out of a wheelchair but unable to reverse the damaged nerve cells caused by the GM1 invader proteins left to run amok from 1985-2000.

This disease has unruly changed me, both for the better and the worse. My hope with this bio-documentary is to produce something positive that benefits myself as well as being of use and service to others in the MMN and neuropathic communities in general with the findings of this research and experimental study.

1 in 100,000 people in the world population acquire MMN.  For those of us who missed the opportunity of timely treatments to stave off this disease may find a renewed sense of fighting back and taking action into their ongoing treatment plans, by incorporating a scheduled routine of intense exercise for maximum results.  At this time I don’t know of any other programs that encourage this with detailed data.  If in fact there are such resources available, I would like to learn about them so as to make my product the best available.

pEACE,
hAROLD