(no subject)
Every 90 minutes someone is diagnosed with ALS(Amyotrophic Lateral Sclerosis); every 90 minutes someone loses their life to ALS.
Many of you are of the same mind as I was a year ago. I'd heard of "Lou Gehrigs disease" but I never knew what exactly it was, and I certainly never thought it was going to play any part of my life.
One year ago November, my mother was diagnosed with a form of ALS called Progressive Bulbar Palsy (PBP). There are about 6 different forms of ALS, all of which affects PALS ( Patients with ALS.) differently. PBP affects the facial muscles as well as hands and feet.
A year ago, my Mom noticed a slurring of her speech. Today she has lost practically all use of her facial muscles. It is very difficult for her to swallow, she cannot speak anymore, her neck can no longer support her head, her fingers are curled, breathing is difficult, and her feet are unsteady. Despite all of this, her mind is crystal clear and sharp as a tack.
The disease itself is not fatal. However, the symptoms (breathing and eating difficulties) are what cause most PALS to pass on. THERE IS NO CURE FOR THIS DISEASE. At this moment, there is only one drug to 'help' PALS but it only prolongs life for a few months.
In the end, PALS are completely aware of what is happening to them, but unable to communicate thier feelings in any natural way (Mom compares it to being in a soundproof room.) I suppose that's why I am such an adovate. Not many other diseases that can cause death affect just the body and not the mind. Although any findings the research will come up with will be to late to help my Mom, perhaps we can get the funding to help anyone else who will end up with this disease.
The ALS Association has helped Mom very much. Since this disease affects her feet (she's fallen at least 3 times since August) the ALSA AZ chapter has loaned to Mom a walker, wheelchair, motorized recliner and in the near future, an electric wheelchair. They also provide support groups for PALS and thier caregivers, a library with reference material and a staff that lends a helping hand (or ear) whenever needed.
THE POINT: As with all charities, the services they provide would not be available with out the many fundraisers held throughout the year. (Here's where I hit y'all up for cash!!) In January they are having the Phoenix (Tempe) Walk to De'feet ALS at Tempe Town Lake, Tempe AZ.
Since I don't know if any of you live in Arizona (they have walks in Flagstaff, Prescott, and Tucson as well.) I'm giving you the link to the web page where you can make online donations (at the end of this LOOOOONG post.)
And if donations are out of the question, go to the ALSA website and see if there is a walk in your area. I think it's free to register and walk everywhere (it is in AZ) just collect donations yourself.
There are a lot of different and great charities out there and I am in no way saying that the ALSA is better than any of them. Hopefully you find it in your heart to make a donation, or spread the word about this horrible disease.
So, thank you SOOOO much for reading all of this (if you made it this far) and letting me get on my soapbox.
Click here to view the team page for Deanda Family(make a donation)
see http://www.focusonals.com and http://www.alsa.org for info on ALS and PBP.