Letter to Mike

Mike, I truly am happy for you. I am disappointed though that you've taken to putting down those of us who seek or who have had the angioplasty for CCSVI. It's really not a matter or so there - I'm right and you're wrong so you should shut up and listen to me!

From what I've read, Campath is for MSrs with RRMS. It is not in the running for those of us with SPMS or PPMS. Apples and oranges. There is nothing out there for us, except for the hope of angioplasty for CCSVI, with which Dr. Zamboni's own wife was treated.

As a person who had (likely still have) SPMS, I have found great success with my angioplasty. Almost 8 months ago, I was given a new lease on life. Nine months ago I had one hope and very little spirit left. Two years ago, I had no hope and had investigated Sweden's Dignitas for when then time I knew would come that there was nothing left to my life but pain, suffering, and complete dependence on others to live. I was also wondering which assisted living facility to choose for my home.

Almost eight months ago, I had to use a walker to get around my home. I couldn't climb stairs. I could scarcely look after myself, but was stubborn enough to keep going because there was finally hope on the horizon. Then I had the angioplasty. I could climb stairs. Walk unaided. Stay up in the evening. Cook dinner without having to sleep immediately afterwards. Then, 3 weeks after my treatment, my mother had a stroke and required a 24 hour caregiver. I moved in with her because I can climb stairs now. I can care for her because I don't need someone to care for me.

Maybe I will slip back to a less independent state, but I know that studies and practise have advanced the angioplasty for CCSVI and doctors are learning more each day, because of people like me who forged ahead and went for what we knew in our hearts was right for us, and for those who will follow us. Those of us who don't want to take more drugs. Who can't afford to take more drugs. Who found hope with the CCSVI treatment. I know that if need be, I will go for a second, even a third angioplasty, because it keeps getting better.

Mike, please respect our choices in the way that we've respected yours. Don't get my Irish up - it might not be possible anymore because things just don't upset and affect me in the ways that they did before my angioplasty to treat my CCSVI.


P.S.: I've gone to this site for years for more information about MS. His was one of the first sites I found to be comprehensive after my diagnosis. He started out small but has really grown over the ensuing years: http://www.mult-sclerosis.org/Campath1H.html

1 comment:

  1. Excellent letter. And...I'm so happy to see you walking, UNAIDED on the beach!!! You go girl!