My life, I would have to say, on the whole has been great! I was diagnosed in ’93, I was 30 at the time. My wife and I had just been married (’92) and we were living in England.
At first, for a few months I was very depressed and extremely irritable! Why my wife never left me, I don’t know but she stuck by me, much in the way you stick by your dad.
Since my diagnosed, I’ve had two children, one is 10 years old and the other is 20 months. I just came to grips, one day, that ALS is a part of my life now, there’s nothing I can do about it (yet), and crying about it is not accomplishing a darn thing. I read everything I could about ALS, the brain, attitude/positive thinking and religion. I’m not an overly religious person, but I am spiritual. This is how I handle things on an intellectual level.
On a physical level, I take the vitamins prescribed for me in ’93. That is;
-3000 mg of vit C;
-1600 IU of vit E; and
-25,000 IU of Beta Carotene. I take all these spread through the day, not all at once.
I’ve also added;
-400 mg Coenzyme Q10
-3000 mg triple fish oil
-low dose aspirin (1 daily)
-multi vitamin (1 daily)
-5 mg creatine
I also do range of motion exercises daily, as laid out by my pt, and a little tai chi.
For the emotional level, I try to stay active with volunteerism, writing, going to movies, anything I can think of!
Like I said earlier, I believe in the mind-body connection. If you mentally feel down your body will follow suit. But at the same time, if you force yourself to grab your coffee and go out on the deck to read the paper with the morning sunlight, your mental outlook will improve! Where the body goes, the mind will follow…
If on bad days, your dad is feeling sore or has cramps, bring him his favourite video or a cold drink and some family photos. Anything to get his mind on something happier than his body pains. It works!
Some days I feel down, it’s natural! Then my kids come home and jump all over me, and suddenly things are not so dark.
Now, Jen, These are all beneficial for your dad. Please, please remember to look after Jen as well! Take your vits, eat properly, have fun and enjoy life! I don’t mean to pretend to ignore ALS, I mean enjoy the life beyond ALS. It’s only a stumbling block, nothing more.
ALS is only a part of your dad’s life, it’s NOT your dad’s life.
Hope this helps!