One day, my mother called me, once again irritated with my father. She said that he'd been 'garbling his words', and was doing it to irritate her. My mother was a bit harsh, to say the least, and had lived what I believe must have been a very hard life, though she didn't talk about it much. This was the first indication that anything was wrong.

My name is Sahar, I am 30 years old and live in Brisbane, Qld. I am deaf and also living with Spinal Muscular Atrophy (SMA). I was diagnosed with it late last year after several unexplained cases of severe muscle weakness, unsteady gait, clumsiness, tripping/falling over, etc. It was diagnosed after a muscle + nerve biopsy and gene tests.

I work as a Disability Support Worker with several organisations: Blue Care, CPLQ, CODA, and Baycare. I do love my job because it gives me a chance to help others, which is something that I like to do and enjoy doing it very much. A person with a disability is first and foremost a PERSON. with emotions, and feelings, and needs just like everyone else. We must see the person first, NOT the disability- whatever it may be.....

I enjoy dancing, and have most recently been in a dance competition and came in 3rd place, which is pretty neat! :) I have ''retired'' from this though, as I am unable to hold my own weight up at times, and it does get too tiring for me. I can walk at this stage, but this is getting bit difficult too, I can''t climb up a flight of stairs without help and even going downstairs can be risky at times if I am unstable.

At current there is no known cure for SMA, or any other neurological disease such as MND, MS..... The gene that is responsible for SMA has been found, but as yet, there is no known cure for it. I hope that some day, with intense research, a cure will be found for SMA, MND, MS, and all the other neurological diseases that no one should have to live with. .....

I wish everyone the best of health and happiness. Bless you all.....

Regards,

Sahar

An extract from Sarah Ezekiel's website -

Dear Friends,

I want to thank you for allowing me to convey to you what my life is like with Amyotrophic Lateral Sclerosis (ALS - Lou Gehrig''s disease - Motor Neurone Disease), and hopefully convince you how and why you should join me in making the difference needed to find and fund the cure I know is out there.

Unlike so many Fayetteville [USA] residents, this is my home-town, where I returned after 21 years in the US Air Force. The Air Force was the best thing that ever happened to me. I'd become a small part of something so much bigger than I, and loved the sense of giving back, doing something for my country. I'd seen much of the world, loved my work, and had no intention of slowing down, fully intending to match dad's Army E-8 before retiring.

In January 2002, I began to notice the muscle between my right thumb and finger twitching, and a general weakness in the hand. By July, I''d been flown from my duty station in Germany to a US Army Medical Center in Washington DC. An ALS diagnosis takes a battery of tests to rule out all other possibilities, a process of elimination.

After a week of tests, I was diagnosed "75% probable" for ALS, and my world came to a screeching halt. I'd been advised to surround myself with those I loved and to "get my affairs in order". ALS slowly began it''s advance, slowly overtaking my life, even though symptoms were still minimal. I was granted a medical retirement, 100% service-connected the following January.

Today, I''ve lost all but the very last of any independence I once had.  I get my nutrition through a feeding tube, I have to use a bi-pap, a type of external ventilator to lie down or sleep, as my diaphragm is too weak for proper respiration.

Because ALS has robbed me of my voice, I communicate through a computer that speaks for me, using a mouse with my semi-capable hand, through special software and on-screen keyboards, but I''ll soon need a head mouse or eye-gaze system for computer interface  These systems typically cost close to $US10,000.

I rely on a constant stream of caregivers 24/7, who must feed/shave/bathe and dress me, you name it. Privacy is a thing of the past. Those with a fast-progressing form of ALS may never make it 12 months, or even to a definitive diagnosis. 

Like the "Iron Horse", Lou Gehrig [US baseball player], I also consider myself maybe the luckiest man alive, having my VA disability compensation, AF retirement pay and Social Security benefits. I also have the wheelchair-accessible van as well as other various equipment to make my remaining life with "Uncle Lou" as comfortable as possible.  Others are not so lucky, as annual patient expenses can soar upwards of $200,000.

Just this past decade we have learned that military veterans are almost twice as likely to contract this horrific disease as the civilian populace. Though I continue to beat the odds, now approaching seven years post-diagnosis, I would not wish this disease, once referred to as "one of the top five cruelest diseases", on my worst enemy. I''ve also learned never to say "It''ll never happen to me" again.

Sincere thanks,  Steve

http://alsbytes.com

I’m 42 and live in Mackay, Queensland. I’ve got MND...

It was a cold afternoon early in 2001. I made the pilgrimage to Sydney from Byron Bay to visit a terminally-ill girlfriend.

Not realising the weather would be so cool I set aside an hour before my appointment to go shopping for a coat. As I walked down Oxford street I was trembling - from cold, from fear. I was bracing myself for what I would see. Deb Bailey was one of the most beautiful women I knew. High cheekbones, a fresh open face, a seductive smile and large empathetic eyes that really saw you.