The Testimonial found below was recently sent to me by an MS Peer who wanted to vent. After she sent this to me, I asked her permission to post it, so that we can get reaction and response from others who feel the same (as she) or want to provide other feedback. Her acknowledgement to have it printed on this blog is shown below her featured writing.
Subject: where do we go from here?
Hi Stu,
I have been getting your newsletter for sometime and I read it thoroughly.
I feel like I am being left behind as others in my stage of this illness.
I feel like there is a political agenda that is outlining how I am supposed to act and feel about the fact that there is no more treatment options for those like myself who have been on different meds over the years and have been on Novantrone in particular and have now been told there simply is no current treatment options for you.
I feel angry about the lack of not only interest in this part of the MS Community but also feel like there is a total lack of concern in helping people once they have exhausted current meds and have what they classify as Secondary Progressive.
It is like Oh Well, to bad but there is nothing for you at this time, so just accept the fact that you are getting worse, things are more difficult and live with it.
Be upbeat about the fact that the medical community has nothing to offer. We want you to have a positive outlook though so we can continue to help those who are in the early stages of this illness.
I CANNOT ACCEPT THIS , I WONDER IF WE TOLD ALL THOSE PEOPLE IN THE MS COMMUNITY OF PROFESSIONALS, TO JUST ACCEPT THAT THERE IS NO HELP FOR YOU, HOW THEY WOULD REACT?
Not to long ago at least in my generation, there was a disease that turned the world upside down, AIDS, If we look back to where it began and how far they have come in relatively a few short years, in comparison to MS, they have managed to harness the disease that is no longer killing or disabling people. IT IS BEING MANAGED WITH EFFECTIVE MEDICATIONS. HIV DIAGNOSIS IS NO LONGER A DEATH SENTENCE.
I feel betrayed by the MS Community, we lack not only effective medications to stop the progression, but we lack services to help with the care of those afflicted and losing their mobility and the ability to maintain their indepedence.
What is to become of those people if they are Single and Sick?
We resemble the AIDS community in that respect that a large number of MS is SINGLE and living alone. No family to help.
So yes I am angry about the press constantly telling us what new things the researchers are looking at.
I have had a MS Diagnosis for 20 years. I AM NOT NEW TO THIS. What I AM NEW TO, IS the fact that I am now at the end of the line for effective treatment options, and that the attitude is ,sorry but there is nothing for you at this time.
I feel those of us facing this point need to have a voice. We need to be heard not brushed aside.
IT IS NOT OK. IT IS NOT ACCEPTABLE AFTER 20 YEARS IN MY TIME THAT WE ARE NOT ANY FURTHER ALONG WITH PROVIDING MEDICATIONS THAT ACTUALLY STOP THIS DISESE FROM PROGRESSING.
THE DIFFERENC IN THE AIDS COMMUNITY AND THE MS COMMUNITY. IS, THEY DID NOT ACCEPT THE INFERIOR PROGRESS THAT WAS BEING MADE.
THEY WERE LOUD AND VISIBLE AND NOT ACCEPTING THE DEATH SENTENCE. THEY SIMPLY DEMANDED RESULTS. AND THEY WERE VISIBLE AND NOT GOING OT HIDE IN A CORNER AND ACCEPT THE ILLNESS.
IT IS UP TO US TO SAY THIS IS NOT ENOUGH! IT IS NOT OK.
WE ARE BEING LED DOWN A ROAD OF SUBMISSON, AND LURED INTO ACCEPTING THAT THE MEDICATIONS ARE SLOWING THE DISEASE PROCESS.
WE NEED TO DEMAND MORE. SLOWING IS NOT ENOUGH! NOT AFTER 20 YEARS. NO.
I WILL NOT BE PRAISING THE MS COMMUNITY FOR A JOB WELL DONE, NOT UNITL THEY STOP THE PROGRESSION.
WE NEED TO SAY AS A COMMUNITY, IT IS NOT ENOUGH!
Thank you Stu for your diligent work in sharing this newsletter with us.
I hope you understand my views. Although not politically correct with that of the MS Community
Sincerely,
Felicia J
Here was Felicia’s response:
I guess it would be OK, especially if it inspires others to respond and I will look to see how others respond.
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