Thursday, January 6, 2011

We Cannot Go the Distance Alone!

Does anyone feel overwhelmed with the amount of information, fact and fiction that has been generated concerning MS and CCSVI? I talk to an eclectic group of people including people with and without MS or CCSVI, lay people and professionals. There are so many facets in relationship to our condition that confusion and even panic is common. I try to keep in mind that it isn't necessary for me to read every word and assertion on the subject. That has helped me to set priorities. There was a time that I spent eight to ten hours a day trying to answer questions and research information for individuals on almost a dozen different websites. I was exhausted, and my family wanted me to share some of my new energy with them. I am in the process of consolidating my information and perspective into just a few outlets. I have a website, but have never used it very often.

When I am asked for advice about procedure preparation, my first recommendation is to keep a personal journal. Make notes of telephone calls, correspondence, appointments etc. Keep a daily record of your health, medications,etc. This may sound simplistic, but a written record of your daily routine and interactions are legally admissible should the need arise. Keep mall emails sent by doctors, nurses,or any communication you think is noteworthy.
Some of you you may know that I have a lawsuit against me for posting a conversation I had with three neurologists a few months ago. Though I did not mention anyone by name, the process of elimination would make their identities easy to discover. After sweating it out for what seems like forever, the suit was dismissed. I wish it was because they knew they were in the wrong and had an attack of conscience. In truth, the judge threw it out because I had recorded the entire meeting. I also tried to make them aware of that but they weren't listening, obviously.
The reality of CCSVI and the venous connection to MS is no longer something that the Big three can treat lightly. The number of people treated is rising daily. Professionals in the medical field are presented with irrefutable evidence of the true nature of our conditions with almost daily updates.Their reactions are juvenile and destructive.Smoke and mirrors are only effective for the short term, not unlike the placebo effect.

Grass root efforts require diligence and the willingness to put the needs of all in line with what we need for ourselves. There is no person who has had the procedure who can claim they did it by their own effort alone. We are yoked together by a common cause. A team of oxen will walk in circles if unequally yoked. Some of us can't do everything, but all of us can do something. A kind word, or acknowledgement may be the only thing that some people can offer. That is as important as the efforts of the strongest and most knowledgeable of our entire community.
Though it may be an unpopular observation to disclose, evidence is indisputable that there have been other researchers and doctors who were making inroads to CCSVI for much longer than we have been led to believe. Dr. Zamboni's willingness to share his discoveries and research was a catalyst for the revolution of which we are all a part. We cannot reach into past history and recompense those who have suffered from CCSVI in the interim. Hindsight is always 20/20. What we can do is move forward as quickly as possible to make this treatment available, safe, and equitable for anyone who needs and desires it. Once we reach that end we can concentrate on recrimination for the many skeletons in the research and development closet.

Further delays from governments, MS support organizations and the entire field of neurology,and the main culprit, the pharmaceutical companies, cannot be tolerated any longer. After learning that two more of our number has passed away due to complications of MS, my willingness to allow time to heal all wounds is standing on shaky ground. My tolerance for people who have MS and are actively fighting against us has reached its expiration date. I do not know if the 62 year old Canadian woman was hoping to be treated or that she was even aware of CCSVI. The other person was in a similar circumstance as Barb Ferrell some time ago. His family fought silently to raise the money needed to travel to another country for his procedure. His struggle is over and his wife and children are left to mourn and shake their heads in disbelief.
The $10,000 to $25,000 price tag for this procedure is obscene and in no way aligns with similar treatments not associated with Multiple Sclerosis. That is food for another blog.
We need to keep in mind that we have a common purpose and act accordingly.

Anyone who needs to add some important information to their CCSVI folder, might consider these two links:
This has information about the congenital link to CCSVI.
Statement of Dr. Sandy McDonald, before the subcommittee on nuerological disease of the Standing Committee on Health ::May 11, 2010


Wendy Ireland said...

As always - wise words! Thank you!

Anonymous said...

as I'm not on facebook, I can only read your posts here, but very thankful I can. Yes, the amount of information is overwhelming. I will have the procedure Jan.20th. Just when I think I know so much, I learn something new. Thank you for posting.
God bless!!