Sunday, September 27, 2009

Well we’re now coming to the end of September and I haven’t posted a blog since June but I’m finally getting back to a routine. I kind of took the summer off as if I were out of school on summer holidays which turned out great. I was fortunate to have spent the majority of summer with my children and we took an amazing trip to San Diego to visit my sister. This past summer has been tough on me at times mainly due to the heat even though some folks thought the Calgary summer was quite poor. Granted we did receive some odd weather but I found it to be very warm on the days and weeks that the sun was shining and believe me my body knows when it’s hot! It seems as though my heat sensitivity has increased because the warm temperatures shut me down a few times so I’ve had to be very careful not to over do it. It’s like it sneaks up on me and then pounces knocking me right out! Not that I’m surprised because I know what sustained heat exposure will do but I have been stunned at how fast it’s hit me. It’s taken less than ten minutes for my body to rebel and once it starts I have to react quickly. My upper body starts to feel prickly as the first drops of sweat begin to exit my skin. My energy drops like a stone and my legs feel very heavy. Sometimes my fingers feel like they numb because they too move slower and become useless at trying to pick up or hold anything small. If I can react quickly like sitting in my van with the AC going full blast I can recover almost as fast but I really need to get my core body temp down in a hurry. I’m sure that I looked odd in San Diego when I was dealing with an overheat one afternoon at a family fun park. We played mini golf and I tried to walk it with my cane in one hand and my putter in the other. It started off okay but within half an hour I couldn’t do it anymore. I had to sit down at the 16th hole and get someone to bring my scooter. I can’t recall who brought it, TK or Dylan but I knew this was going to be a problem. We were at mini golf so you can imagine the small pathways to navigate on my scooter so of course a wheel went off the walk into the artificial turf of the 18th fairway. I knew that would happen so it was a little funny but I was able to hobble over to drive it out, at least I can have a little fun being a master scooter. I was driving around looking for a fountain or pond, anything I could dunk my shirt in. I found a hose and ripped my shirt off, drenched it with the hose and put it back on, it felt great! Actually wet clothes or towels are the best and fastest way to cool myself down. I recovered in about 10 minutes and went go-karting but I’m sure it was a funny sight. If I can’t react quickly I end up having to lie down for a few hours to recoup so this is why I need to be careful. Since I found the summer quite warm I’ve been a little lazy because I haven’t been working out and I haven’t been writing but since school has started again my writing has resumed.
As for my health update, everything has remained stable which is very good news however the problems that I’ve always dealt with continue to plague me. There is very little consistency to my troubles other than the heat and fatigue issues. For example, the shooting pains in my upper chest and shoulder disappeared for several months but as of two weeks ago they have returned and there is no obvious trigger that produces the pain. My eyes are still bothered when I’m looking at the computer screen or TV for an extended period and my energy levels are very up and down. The important thing is that I haven’t noticed any real progression or had any attacks and I haven’t been on any MS medication in 15 months. As long as I can maintain this status quo I’m happy.
CTV replayed the W-Five episode a few weeks ago so I’ve been in contact with a lot of new people regarding my treatment in China and stem cells in general. The concept of using stem cells to treat MS as well as many other diseases has really been gaining traction. There are now many facilities around the world offering the treatment and some are claiming significant success. I’ve mentioned Cell Medicine before who operate the clinic in Costa Rica and have recently opened a new state of the art facility in Panama. Holly Huber whom I’ve written about has been a big advocate since returning from Costa Rica, she has experienced many improvements with her MS symptoms. They use fat derived stem cells which appear to be quite effective. She has recently returned for another round of treatments after feeling some of her symptoms flare up. She and the clinic agreed that they needed to treat her MS aggressively in order to keep her symptoms at bay.
An Israeli hospital has also announced success in using stem cells to treat multiple sclerosis claiming that mesenchymal stem cell treatment can repair existing damage to the nerve cells. As reported by CTV, researchers at the Tel Aviv Medical Center have pioneered a procedure whereby they remove a patient's own mesenchymal stem cells and grow them into large quantities in a laboratory and inject them back into the patient.
The Israeli treatment gained recognition when CTV reported on the success of Canadian golf pro Louise Zylstra who because or her MS could barely walk 50 yards but eight months after travelling to Israel for the treatment, she is back golfing. I have been in contact with a Canadian woman who is going through the process of signing up for the treatment but other than what she has told me I haven’t found much information on the program. It’s great to hear of a success story like Louise but there seems to be some missing information about the Israeli program. For instance I would like to know what the Israeli researchers actually pioneered because Beike has recommended for some time that all MS patients receive mesenchymal stem cell injections as the cells can not only produce important growth factors and differentiate into mature cells but can also regulate the immune system, reducing inflammation and scarring. I can’t see anything new that the Israeli research is offering even though their focus is on multiple sclerosis. So far only 25 patients have undergone the procedure and early findings suggest that the mesenchymal stem cell treatment can repair existing damage to the nerve cells but researchers note that it’s best to receive the therapy in the early stages of the disease before irreversible changes occur.
There is still much information that I need to learn about this program but I do know the cost is similar to what I paid for treatment in China. I don’t know if they do spinal injections, how many treatments they administer and what it is that differentiates them from other facilities. I did learn that the patient must first send their MRI to be examined by an Israeli doctor to determine if he or she is a good candidate for the procedure which cost $1,250 before anything is done. If approved the patient must go to Israel for the bone marrow extraction then return home and about 4 to 6 weeks later go to either Greece or Turkey for the procedure since Israel does not allow non citizens access. Although this program sounds very promising I think it is very early to make any determinations but what I found even more interesting is that Dr. Freedman has thrown his support behind this alternative. If you recall Dr. Freedman is the Ottawa neurologist who conducted the stem cell study covered in the same W-Five report that I was in. Given his previous mistrust and scepticism of other stem cell treatments I was very surprised but encouraged that he’s shown support for the Israeli program. Freedman was Zylstra’s neurologist and he stated “given the progressive nature of Zylstra's MS, such a recovery would have been highly unlikely without the treatment”. He also said “because it offers our patients promise and if it's going to give us some insight on how we can repair the system, from the standpoint of recovery, I think it's absolute that we move forward with this kind of a program" and he hopes to organize a meeting of experts to plan how to accelerate research and bring the treatment to Canada. It’s about time he acknowledges alternative treatments and the promise they hold.
I’ll have more on this and other stem cell procedures that I’ve begun to investigate in the near future. Depending on what I learn, another fund raising campaign may need to get underway.
Stay posted.

1 comment:

Sandi said...

hi lee - my name is sandi and i have had the diagnosis of ms since 1/84. neuros said i would never walk again - God proved them wrong:) anyway dr slavin in israel accepted me as a asc patient. i had my bone marrow cells harvested in tel aviv 7/15. i am now waiting for the cells to be ready for placing them in my spine. the clinic had said they grow cells for 60-90 days - but mine won't be ready in 90 days. what makes things interesting for me is that while using tysabri (only rx really used) the docs thot they saw a "possible" lymphoma. so although i was originally going to costa rica for the cells - i had to instead go to tel aviv and be treated by dr slavin who is one of the worlds top hematologists. so this might be the hold up on my cells - but i will keep you posted! - prayers 2u - Sandi