So many people are astounded when I tell them that only 10% of ALS patients get ALS from their DNA.
ALS is 90% SPONTANEOUS. That means it can happen to you! Which might be the best arguement for taking care of oneself that I’ve ever heard.
I have my own suspicions of what causes ALS but officially we don’t know. What we do know is it manifests differently in different patients
10% Bulbar onset like me where your speech, swallowing and facial control goes first, and the rest get a dragging foot or hand weakness first that progresses inward from the extremities.
Familial ALS is a subset of a subset, and the resources available for people with FALS are scarce. I’ve met families who have lost 8,10, 14 even 20 -30 people in the last 2 generations from ALS. I met one woman at the ALS Advcacy Days who can trace ALS back for 7-8 generations due to symptoms and records. These families don’t “borrow ” the hospital beds for the home and the high tech equipment, they have learned just to put it in storage for the next time someone needs it.
In my family my uncle had ALS and I have ALS. I am fervently praying that this is more coincidence than genetic. Ironically, I grew up thinking I had chosen my parents quite well and in the deep end of the gene pool…My grandparents all lived long lives (3 well into their 90’s) and most of my family is peternaturally strong, athletic and mensa quality folk. So while the Schlekeway family is a bunch of teachers, high performing jocks and all around awesome giving people, we may also be susceptible to the manifestation of what is called ALS. I do not want my family to think for a moment that they are a slave to this possibility~ as I have seen other families become and act like. Quaking in fear of the day the diagnosis hammer will fall on them or their children…to the point they medicate themselves with all the anti anxiety/anti depressants that are so prolific in our culture. This I do not recommend…The testing or the meds-I dont get the value of testing for the gene sod1 or any other gene that might give you a heads up on a disease. LIVE YOUR LIFE. Deal with it if it comes, but don’t invite it in to set up an apartment in your prefrontal cortext until it manifests itself for crying out loud!
You all will do what you’re going to do, but digging a ditch to wallow in is a dangerous thing. I may have had the gene( I don’t actually know) but I’m sure that my lifestyle of extreme working and living had alot to do with tripping it’s trigger. Would I have lived differently had I known I had a gene for something? I doubt it, I’m a stubborn creature. I always think I’m the exception. I have never mastered until recently the art of SELF CARE.
Here’s a few tips:
Don’t work 70-80 hours a week
Don’t stuff your emotions especially after a trauma (like an assault) or any other insult
Do work out and keep in shape
Dont pollute your body with CRAP- eat real food, no smoking, avoid preservatives and mass produced meat and poultry
Dont confuse diet soda/soda with water
Don’t live with mercury filings -get them removed
Be rigorous about caring for head injuries
Don’t work until you are depleted, tend to your adrenal health
Get educated about what’s in our food and environment, and do what you can to cleanse yours.
I could go on but then this would be a rant…you get the picture! Given that ALS is 90% Spontaneous, and on the rise with all the other autoimmune diseases; do yourself a big fat favor~ Take care of you and your body first…with out that you got squat.