May is ALS awareness month – my response to the ALS organization

I have been living with ALS for eight years. I'm grateful that I made it past the dreaded 3 to 5 year life sentence most ALS patients are faced with. I don't know why... I can only say that I'm thrilled to be alive and thankful for the care given to me daily by my wife (primary caregiver), son (24 years old), my paid caregivers, doctors, nurses, and wonderful friends.

Did I do anything differently? Probably not, every ALS patient follows a similar but different progression. However, I did not follow the advice of my doctors and have a tracheotomy soon after my diagnosis. Instead, I chose to use a noninvasive ventilator (first a Resperonics BiPAP, and now the Trilogy 100). I wear a breathing mask 24/7. It doesn't look very flattering, little children say I look like an elephant, but I'm still breathing. It's bulky and difficult to sleep with. I also have trouble with eating – I will be having a stomach feeding tube installed later this month. I'm aware of the risk of not having the tracheotomy – there is the possibility of respiratory failure – but I believe the decision has allowed me to keep my voice.

I'm extremely lucky to still have this ability. It allows me to communicate my needs, keep some control over my life, use the computer with voice recognition software, and most importantly, it has given me the opportunity to write short stories, blog posts, essays and novels. Writing has become a daily ritual for me. It's therapeutic. It makes me feel as if I am still a productive member of society. I think that for many patients with ALS, staying productive is a daily struggle that affects our entire being – physical, mental, spiritual and emotional.

So, it's been eight years and I'm grateful, but living an extended period of time with a terminal illness has its own set of difficulties – mostly financial and emotional. I appreciate the efforts of the ALS organization to promote awareness and fund research for a cure and treatment. This is wonderful for ALS patients of the future, but to be completely selfish, I have to ask, "What's in it for me?"

I need help now! My wife needs some respite! We can't afford to pay for caregivers, medical costs, and keep our middle-class standard of living – bankruptcy looms. We need help navigating Medicare guidelines and the complex supplemental insurance coverage billing practices. Our medical system is not patient friendly. Medicare laws regarding long-term care, rental of durable medical equipment, home care, nursing care, etc. are extremely rigid and do not take the individual patient into consideration.

Living beyond the 3 to 5 year barrier is a blessing, but also a struggle. I ask that the ALS organization consider practical ways to help ALS patients now – please continue building awareness, funding research, but also look at ways you can support ALS patients while they are still alive and struggling daily to navigate our health care system.