Dear editor:
Has the recent news items of the ice bucket challenge increased your awareness of ALS?
How many of you have gone to your computer to investigate ALS and learn about the condition? Or do you know anyone living with ALS?
So many have taken up the challenge and dumped a bucket of ice water over their head in recognition of someone, then sending out a challenge to several others and/or donating money to the cause.
There are members of the media, politicians, athletes, kids of all ages, your friends and mine and many others who know someone affected by the disease. Even Kermit the Frog accepted the challenge.
Someone coined the phrase ‘living with ALS’ and that is what we do. That is what I am doing.
I have no choice...there is no known cure or control. Progress is slow or rapid. Symptoms vary from one individual to another. The pattern of progress is not consistent in any way. Advice is given to remain as active as possible for as long as is safe, because a fall can cause additional problems.
In my case, some very different nerve/muscle conditions were appearing and affecting my activities and my daily life. It was difficult to speak clearly.
A visit to my local physician led to investigations, then referrals to specialists, then the testing began. Then finally, the diagnosis…you have ALS.
There is no cure or control and you will likely live for…Do you have any questions? What? There is no cure!
Some physician must be able to help. What? There is no pill, no treatment, no therapy? The answer was no. The suggestion was to go home and enjoy my time. And was I angry? Indeed I was. I cocooned in a blanket on the sofa thinking I would run out of tears.
It has been stated that God never gives us more than we can handle. Really? I know a loving God who is with us every day. I become weaker, very slowly, and now our home has various equipment to help me be as mobile as possible. And, I am no longer able to speak but have not been silenced.
There are birthdays, graduations, babies born, grandchildren to make memories with, our children and spouses to enjoy, family and friends and neighbours who keep in touch in various ways and offer invaluable support.
We have wonderful support from staff of the ALS Society. The cheerful staff from Home Care comes each morning to help get me up and going.
With all this support, it is much easier to keep our spirits up. We feel the warm fuzzy feeling in our bodies and souls. Then we have hope.
Now, the ice bucket challenge hopefully will give a real sense of hope to sufferers of ALS. More attention may be given, such as more research, more studies undertaken and more minds focusing in this area.
May each of you be more aware of the disease…may you learn about the disease. May you somehow be involved, and many thanks to all who already have.
Help give hope…in your own way.
Carol Wilson
