An email from Ronnie to Jeff on 04/09/03

            I appreciate the fact that you left the money, it was nice surprise...
            I am sure I can put it to good use. I need a few things I have been doing
            without. Let me explain something about money and this disease.
            I am not discouraging you from helping me, but I want you do understand
            how money and this disease work hand in hand, and what I know about
            people and how they can be deceiving.

            Like all good and bad things I have done with my life, this disease
            can cost 200,000 a year. Regardless of how much money I have,
            or how much insurance I had, the costs are pretty much the same.

            After a year and a half of going to more than 10 different doctors and
            hospitals, I figure out if I put my mind to it, I could know more about
            the disease then doctor's and I have. I have done a considerable amount
            of research and know more about it, then the specialists.
            I now have an excellent neurologist, who doesn't charge me a lot,
            and we are the best of friends and the state covers him.
            Here is how money and the disease can deceive you.

            When I researched the drug I am now on, I was told there was only
            one doctor who prescribed it, and only 5 pharmacies that compounded
            it. So the folks made the appointment with the doctor in New York
            for 750.00, right after Christmas, and I was going to go for more of the
            same fucking tests I had been through, just to get on the medication.
            I was told by Social Services, they wouldn't pay for the visit or the drug.
            Now as you know and feel,  the folks wanted to do everything they
            possibly could to help me, even if it was spending or wasting another 750.00.
            I told them to cancel the appointment and just wait, till I had it figured out.
            They thought I was nuts, and I am sure they felt bad because I didn't
            let them help, but here is what happened.

            A week later, I sent my doctor all the information on the drug,
            I had a 100 Dollar appointment, and he wrote me 5 prescriptions for
            everything I am on, we didn't have to go to New York, and the pharmacy
            who I have a great relationship with compounded the drug based
            on my research and their knowledge.
            So you see, we saved 750.00, and the hassle. I have been doing this
            long enough to realize, there is nothing to panic about,

            The Mayor has been with me hand in hand throughout the ordeal,
            and she knows every move I make. She also holds a lot of
            political weight in the town, in the state and in the nation. I used to work
            with her husband. So anything I pretty much need, I can get,
            politically.

            So I guess what I am saying is sure you can help, just don't let your emotions
            get in the way of the bullshit. This can be a very emotional disease,
            and very costly. So while it may be your first idea to run out and solve a
            a problem, by spending money, just sit back and think a bit. People will
            tell you this and that, and that costs a million, but I have found that if
            you ask the right people the right questions, you normally find the cheaper
            answer.

            You should know that the MDA and ALS organization have many programs
            for people like me, this what they do for a living.

            You should also know that when I first got sick and found out what I had,
            I did a lot of research and a lot of planning. After all my life depends on it.
            I know about every stage of the disease where to find help and such,
            I have it down to the wheelchair and the nursing home.
            I have a plan for everything and a place for everything.

            Sure I could use more help, your my brother and that's cool,
            I can deal with it. Just use your head and be patient.
            Don't let the emotion catch you into an emotional trap that you think
            you have to save your dying brother.
            I don't care about the disease or complain about it.
            I figure it may kill me regardless of how I feel about it, so I look at it
            from the positive side. Its just another strange part of my life.
            That's all it is.

            Don't panic if I don't email you back right away sometimes,
            don't get sensitive about it, for example today I was writing you a response to your
            email when I spilled some coffee on my fucking keyboard and rendered it useless
            till the Q button dried out....lol
            I also write a lot of emails and I am writing a bunch of letters for the papers, and
            for Congress. You might think I sit here and drink beer all day but I do have a purpose.

            Thanks for you have done for me and I will talk to you soon.
            Welcome to the support team.
            Adios...