Hi, my name is Madelyn and was diagnosed with ALS at the age of 48.
Often referred to as a "princess" i had fun no matter what!
"Do you have a credit card for your purchase..let me run that for you...oops I should try out for the Yankees with a throw like that!" When really I was hiding my embarrassment of how that credit card ended up 50 feet away.
After several times of winging credit cards across the way I went and got my hands checked out..this was in February of 2005...carpal tunnel and ulnar nerve damage in both..hmmm....both...ok lets get theses fixed. Left done first...a ok...now we do right...2 weeks later still no right response..very weak, unable to grasp anything...lets do occupational therapy...6mths in tears the doc says I haven't given enough healing time...more occupational therapy, but changed therapist..within 4 visits the therapists says to me..here is the name of a hand surgeon see him asap. ok..i'm scared...
the new doc had his person do an emg...2.5 hours long head to toes...Both docs called me a day later...and said we have an appointment set up for you for a neurologist. Me and hubby get to our appointment to have doc and a student come in..doc looks thru the file and says "you have Lou Gehrigs disease/ALS... I suggest you get your affairs in order and get shit done fast..oh yeah eat whatever you want while you can...see ya in six weeks as he's walking out the door. Even his student sat their with his jaw open. I immediately sought out a neurologist familiar with ALS.
My grandson was born Sept.7th, I got this dx in Oct..had to put my 13 yr old dog to sleep in Dec and by end of Jan my daughter and grandson ran off with an army guy and I didn't see or hear from her for over 8 months.
Getting out of bed much less going to work were not a priority.
I was born and raised in New York..a Yankees fan since I was knee high to a coke bottle..new all about Lou Gehrig...my hubby and i even had a sports room in our house my side was Yankees memorabilia but I have since taken it down. It became an erie sense of coincidence for me.
In the last two years I have had to give up control, of everything...personal, physical and emotional. I gained a new respect for life and my moto became "Live hard, live fast" and a greater depth of love. My daughter and grandson are back in my life and my hubby/caregiver is the loving man I always new he was. He never new what a checkbook was much less sorting whites and colors was till this event. I refer to it as an event because this diagnosis took our lives as we knew them and never gave it back.
Friends..came and went...family came and waited, for what I have no idea.
Then..what do u mean I cant stay home alone cause I fell....whats the big deal? After 5 falls I agreed. This is where the fun begins.
What do you mean you don't provide coverage for this or that. Who's supposed to help me while hubby tries to work? Yup...I've got family all over, but not here where I am. Why wont anyone HELP ME!
With every hint of a cure, I wonder could this be it, could this be the cure? The one thing that will get me past the 5 year mark....
So I sit here watching everything go by me. Filling my time being as productive as I can and thank God for His arms around me.