WHEN DID IT START ?
The first two finger spasms I had were at work on Jan.15,2010. The first time I noticed something I couldn't do (make the letter "R" in sign language) was a week after I retired in April 2011.
WHEN WERE YOU DIAGNOSED ?
I was first told on Nov.23, 2011. The diagnosis was confirmed by the ALS specialist on Jan.3, 2012
IS THIS A COMMON DISEASE ?
Not at all. In British Columbia (pop. 4.6 million) there are just slightly over 300 people with ALS.
IS IT HEREDITARY ?
Only 5-10% of cases are. All the rest (90-95%) have no family history.
WHAT ARE YOUR SYMPTOMS ?
All my symptoms are in my hands. Several of the muscles have just disappeared. This has caused me to lose some strength and a lot of fine-motor function (buttons,zippers,nail clippers,turning keys,cutting food,etc).
I am getting inventive with adaptations to help me with tasks and the Occupational Therapist has been helping me with a bunch of other things. If there's something I can't do, I just ask for help.
HOW WILL IT PROGRESS ?
Each patient is different, but since mine started in my hands it will progress to arms and then to feet and legs. It will not "jump" from hands to those muscles that support breathing and swallowing.
I have appointments at the ALS Clinic in May, August and November. After a few visits, the doctor will be able to get a better idea of how quickly things will progress.
ARE YOU WELL SUPPORTED ?
Incredibly well ! I have family, friends,acquaintances,and neighbours who have all expressed their love,support, and offers of help. Medically, I have my own wonderful GP as well as the fantastic team from the ALS Clinic at GF Strong. The ALS Society of BC has also been a wealth of information and support.
WHAT CAN I DO TO HELP ?
Pray. Hope. Wish.
Currently I am managing well with the help of my loving partner (and some handy "aids for daily living").
When the time comes that I/we need more help we will use the Lotsa Helping Hands website where you can sign up to be part of my helping community.