I was diagnosed with ALS approximately two years ago. I was 22. You may not know what ALS is, but the diagnosis is fatal and very frightening.

Discovering I have a fatal condition has taken quite a toll on me and my loved ones. Dealing with all of the paperwork and red tape of SSI/SSDI and Medicare has made our emotional anguish even more intense. It almost feels as if I must defend that I even have the disease with every form and phone call. They have asked me questions such as "What are your symptoms?" "When did your initial symptoms begin?" and "What was the date of your diagnosis?" Answering their questions was becoming quite depressing. I am continuously reminded of my medical status and that gets my mind wandering.

I know that the questions and phone calls are a necessary and understandable requirement on their end. I know these people are helping me and I should not be complaining about the paperwork. It feels absurd. And then I feel guilty. Life has become like that. I have such a strong feeling of gratefulness for the people and help in my life and then aggravation that I have disease and need their help in the first place. Unfortunately, sometimes I end up lashing out at the people I love the most because they happen to be in the wrong place at the wrong time and for that I am truly sorry.

Medicare can be quite difficult and frustrating as some of you may know. It is extremely difficult to get them to cover some of the things that I need to live as normal of a life as possible. Medicare covered an electric recliner that places me into a standing position yet would not pay for an electric stair lift so that I could go outside my home or visit my sister downstairs. Living on the second floor with a very steep stairway, this is quite a problem! We had become faced with the prospect of having to move to a more convenient location. The idea that we would have to move, combined with facing a fatal disease seems really unfair. Luckily, there are organizations that step-up to the plate by helping people like myself with things that can be very difficult to approach on your own.

Compassionate Care ALS is a nonprofit organization that assists people with ALS (also known as Lou Gehrig's disease.) Our friend Lynn McGovern from the ALS Association in Rhode Island put me in contact with the Executive Director whose name is Ron Hoffman. She felt that he could provide help with some of the problems that we were having. It is an understatement to say that she was right. The amount of services offered and provided through this organization is a miracle. Ron is an angel.

He came to our house personally and sat down and spoke with myself and my family. He was sincere and kind and genuinely interested in what we had to say. He explained what his organization does and the many ways they would be able to help me, if need be. He also told me I could call him anytime I needed him and offered to go with me to a doctor's appointment. His organization installed both an outside ramp and a stair-lift at no cost. I am ecstatic that I can go outside any time I want now to bathe in the sun or visit my sister downstairs. Other than the ambulance rides to my appointments, I hadn't been out of the house for approximately four months. I was beginning to go stir crazy. I had been dying to go outside.

The heart on that man and the people working for that organization is phenomenal. I will never be able to thank them enough for their help and support through theses difficult times. I am writing this article because of the gratitude and appreciation I have for them. They are wonderful people. The organization again is nonprofit so any donations that they receive are tax-deductible. This would be a heart-felt donation and would help many people who cannot afford such things as well as the organization itself. In my opinion there should be more organizations that are as friendly and helpful as this one.

Original article by W1NE, published on Jun 13, 2007.