This is a special time for me and my family. I believe that regardless of our religious or political views and practices that what most of us call the holiday season is a time of reflection and thanksgiving. If you are reading this, you are literate. If you have a roof over your head, you are not homeless and at the mercy of the elements. If you ate today, you have not gone hungry. These factors alone make you part of a minority group in the world today. If you enjoy good health then you know that again you have a prized possession. Maybe you have a fine reputation, career or favored place in society. Maybe you live in a free country where you can say what you feel without fear of recrimination. Still others have a lifestyle or pursuits that bring them satisfaction. Another person might wish for more. I have had these things and more in my lifetime. In addition, I have a companion who has shared over 35 years of my life with me. Together we have six children, 15 grandchildren with a new one on the way. I am 58 years old, yet my father is still here and has his knowledge, memories and personality are intact at 86 years of age. All women my age should be so fortunate.
Yesterday I had the privilege of watching and hearing my grandchildren play the violin and sing for the Christmas program at church. Several years ago I wondered if my oldest grandson would ever play the violin without the screeches and missed notes. Today there were tears in my eyes due in part to a beautiful duet he performed with a young lady who played the viola, and also due to the memory of all the missed concerts and disappointments when I was too ill to attend.
I am an average woman with nothing to distinguish me from anybody else except those whose lives in which I play a role. On the other hand, I have found myself in extraordinary circumstances, most of which I won’t attempt to regale you with in this venue. Multiple Sclerosis makes me part of an exclusive club that virtually no person wants to join. The perks are few, the dues are quite expensive. Our agenda is varied, but our goal is absolute. There is no recruitment program yet our numbers grow every day. Before days’ end there will regretfully be several newcomers. They will be accepted tearfully with open arms. It will take time for them learn the rules, and adjust to the more negative aspects of our exclusivity. Outsiders have little understanding or knowledge about the disease that binds us together. We have a large booster club who support and sustain us. Some stay for the long term, others drop by the way side quickly. The membership there changes often and we have to outsource some of our detail support. For 40 years we have had family, friends, doctors, hospitals, MS support groups and a wide variety of peripheral helping hands. Many of us have been witness to a plethora of treatment options with variable degrees of success. Most of them offer some temporary relief for a small variety but not all symptoms that gradually siphons the energy, independence and spirit from a high percentage within our ranks.
Recent events have shaken the firmly entrenched belief that there is no real hope for us other than expensive drug therapies that thus far have been overwhelming failures. Neurologists, drug companies and pseudo support organizations, groups and very recently websites have lined their pockets with our money and suffering. Dr. Zamboni brought to light a far more plausible theory in the causal factors of MS. In addition, he sweetened the coffers with a minalmally invasive, drug free treatment that has shown not only great potential, but superior results. Although the venous connection to MS was postulated decades ago, the treatment is still in its infancy. Old habits and greed are difficult to overcome. The two critical pieces of the puzzle was technology advanced enough to detect CCSVI and the ability to expose the cover up by pharmaceutical companies and other benefactors who refused to accept the financial devastation to their bottom line. It is my fervent desire that they will someday be held accountable for their deceit and justice given satisfaction for the tremendous loss of life and prosperity for which they are accountable. Restitution is not fully possible yet should be required as much as is feasible.
Despite the reality of our situation as it stands today, we can’t lose sight of all we do have to be thankful for and look forward to a far brighter future for members of our community. Our newest members will reap the benefits of our efforts today. There have been casualties, sacrifices and disappointments in our quest, but history has shown repeatedly that where much is given, much is required in return. Nature abhors a vacuum. Either we forge ahead, or regression will be the certain consequence. Change is inevitable and stagnation is not an option. Now that some of us have been lifted from the abyss that our condition brings we can’t walk away and let the rest of us continue to spiral down in the vortex.
One of my daughters, her husband and their children are leaving in a few days for Christmas with her in laws. I do have to share them once in awhile. We exchanged gifts early because they will not be here with the rest of us Christmas Day. My little family has grown to 27.5 members. None of us own a home large enough for a tribe. A few months ago, I got a new laptop and so was able to give my two year laptop to my oldest grandson. New to him, he was excited and wanted everyone to know about it and share in his good fortune. New to me is my “old” life. I’m excited and want everyone to see and share in my good fortune. If I am overly exuberant, forgive me for I am not an introvert. I also am not usually given to self promotion. However, as I have described earlier, I am not the sole member of this club and my initiation was quite tumultuous. Along the way I have heard more stories of suffering, pain and decline in life quality than I could have ever expected as a Family Counselor. Perhaps I’m too tenderhearted for that profession, but my options were limited and a scholarship for under water basket weaving or female mud wrestling were unavailable at the time. In all due sincerity, we have become as a winter bonfire of energy, dedication and purpose. The last torch will be ignited; there will be no hiding the truth from either friend or foe. In the process we may find that we have been a catalyst for needed change within the medical community and patient advocacy as well.
This is a new beginning. Take time for those things that bring you joy at this time of year. Focus your efforts on sharing the best within you to those you love. Let’s be supportive of our cyber family as well so that we can all reach the prime goal we share: a better quality of life for all of us suffering the devastating effects of Multiple Sclerosis. Perhaps we can shine some of this light on the ignorance associated with those who will not capitulate or bend to accommodate us as well.
This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
4 comments:
The failure rate as it is performed by the Study in Buffalo as well as some other better known doctors is due in part by the political pressure they are under. Those not under a magnifying glass are having significantly less restensos as well as failure rates.I have been shouting for better post-procedure protocol for six months.Why is it that I as a layman realized this sooner than the "experts"?
CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
Dr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.
Autologous Mesenchymal stem cell transplantation (AMSCT) means that the stem cells are taken from the patient’s own body and are cultured prior to transplantation at various times over an extended period. With the patient as the donor, there is no risk of transplantation leading to cancer as opposed to the risks of transplanting embryonic stem cells. AMSCT is now regularly used in North America for the treatment of Hodgkin’s lymphoma and non-Hodgkin’s lymphoma as well as other diseases with remarkable results including cure for many patients. “If it works for some diseases, is safe and well-tolerated by the patient, then why not other diseases? We believe that Multiple Sclerosis can now be added to that list.” says Gupte.
In the past four years Gupte has performed over 1500 autologous stem cell transplantations for many types of neuro-degenerative diseases, including MS, cerebral palsy, ALS, Crohn’s Disease, Huntington’s, and Parkinson’s among others.
For the past year, CCSVI Clinic has not done the ‘liberation therapy’ for MS alone without the combined stem cell transplantation in the same 12-day protocol sequence. “Once we saw how dramatic and long-lasting the outcomes were with the addition of the stem cells, it didn’t make sense to do it any other way.” says Gupte. Most MS patients would agree. Lawrence Vermeersch of Kenora, Canada is convinced that it’s the stem cells that are continuing to make the difference in his recovery. “I’m thinking it will take a year to full recovery, but I’m continuing to improve every day.”For more details visit http://ccsviclinic.ca/?p=882
Jessica Davis, diagnosed with MS in 2003, of Somerset, UK agrees: “I have my life back thanks to CCSVI Clinic and it’s the best thing I ever did for myself. They weren’t easy to find but I did my homework.” She continues: “I had to be my own advocate for both liberation therapy and the stem cells because I got no help from my own neurologist. From the day I was diagnosed, my MS was aggressive. I didn’t have much time to take action before I would get to the point where just getting out of the flat would become impossible. I was using a cane and so tired all the time. After the 12 days at CCSVI Clinic, the first thing that cleared up was the head fog and my (incontinence) and the rest has come back over the past six months. I am working again and I consider myself cured.”
“These are typical stories for all types of neuro-degenerative diseases we are treating through CCSVI Clinic. At least with MS we are seeing significant improvement in many patients and I believe this trend of outcomes will continue” says Gupte. “We have also had some significantly positive outcomes with ALS and (cerebral) palsy. With the results we have seen in the past year, I think that the promise of stem cells is coming closer to matching the reality.”For mor details visit http://ccsviclinic.ca/?p=882
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