My Take on ER and ALS

ER for dramatic purposes choose to show ALS from the worse end to the beginning. This episode did not show how it really gets to the hard part. It did not give enough awareness to how many people it affects, but they did show hope. This is only a part of me, but I thought you should know what it looks like in me.

The way ALS attacks the body is the same in each patient, however each body handles the attack differently. Mine started at 29, with a feeling of being slightly off balance (needing to hold the railing in 3inch heels while doing stairs). A weak bladder, my fingers weakened (dropped things) and my speech was just a tad slurred. Over the years these things progressed to, slurred speech (badly when tired), too much saliva (sometimes it goes down the wrong pipe), a very bad gait and occasional fall (I use a four-wheel walker w/brakes), my hands will not straighten, thumbs are very weak, I type with two fingers (one remains on shift key), I take pills for bladder control which helps dry up saliva and take medicine for charlie horses. The only other symptom which is widely unknown is the ability to control emotion, when I cry its "the ugly cry" and when I laugh its until I cry (or pee, lol). I have no physical pain and take very few drugs (just drugs for effects of ALS, not for ALS). This is really amazing for 16yrs and I do realize it will keep going, but quality of life is most important and I have that in abundance.

They tried to put me in an electric wheelchair five years ago and it is in my garage to this day patiently waiting. I have a strong grip, just weak fingers so I can drive but I can’t button or zip. When you fight ALS by working out, eating right, getting rest, it fights back. Your body is under physical stress and that has come with an array of small setbacks like, a rare skin disease and migraines. So mental stress can make it go into a fatigue melt down mode. I get rid of stress by saying what I think and try to keep drama out of my life (not easy to do with our kid’s).

I will accept a feeding tube and maybe even a ventilator as long as I can communicate. I am not scared or angry, because I have so much. Dave is retiring at 50 and opting for less income so we can keep good medical and have home care. We have 19 months to save, sell our current house and have no mortgage on the second one. Dave is nervous, but if we pull this off, Dave can spend quality time with me, not be my primary care giver and not ever lose our dream home. I bring in a good income, but if I were to pass I need to know financially he will be fine.

There will be a cure one day and I’m fighting to see that day. One in one thousand people will get ALS, but because most pass in 3-5 years, public awareness is key. I thank James Woods and the people at ER.