Monday, June 18, 2012

Research Study Update

Chris had his Multiple Sclerosis Research Study appointment today. This is the appointment where they get Chris to do a bunch of tests to determine the progression or improvement of his disease.

We had good news and bad news.

Good news. Chris is still doing great. No signs of any disease progression, which is the same as all other transplant patients, and small signs of improvement. He had an EDSS score of 2.0 at his last appointment in December, and one neurologist even considered giving him a 1.5. His official score is still a 2.0, but in my mind he is more like a 1.75 (not a real score, but since he was borderline I think they need have a bigger range).

Bad news: Since the MS Society of Canada did not renew its grant for its long-term research study, the formal research study will end this year and this was Chris' last research study appointment. We were assured that they would continue to apply for funding, and they would continue to see Chris to track his progress, but the research study portion will end.

It is really disappointing news seeing a procedure that has been so successful (all patients have seen a halt in their MS progression) lose funding. Knowing the long-term effects and benefits of this procedure is so important and it really seems like such a shame that this will longer happen. For us, since we live in Ottawa, this will not make that big of a difference. Chris will continued to be monitored. However,patients that need to travel to Ottawa from across Canada, including PEI and British Columbia, will now need to travel on their own dime if they want to continue to see Dr. Freedman and the MS transplant team.

We also found out that the MS research team also did not get funding for a different kind of stem cell therapy that uses the patient's own mesenchymal stem cells. The benefits of this therapy is that it does not require the patient to undergo intensive chemotherapy and is much safer than the transplant. There have been several clinical trials of this therapy in Europe, but unfortunately, it is not being researched in Canada.

What makes this so frustrating is that while these research studies are not getting funding, the MS Society and provincial governments are throwing tons of money at CCSVI, which has had nowhere near the success rates. I can completely understand why MS patients want CCSVI to be the cure, and at one point Chris was on a waiting list to get the veins in his neck scanned to see if this was the cause of his MS.

However, after reading so many studies that do not support this treatment having any lasting benefits, including the Newfoundland study this month, and hearing from other people through our blog who have underwent the procedure and had limited or no improvement, I am convinced that it is not the "liberation procedure."

Okay, my rant is over.

Back to the good news. Chris is continuing to impress the MS research team with how well he is doing post-transplant. And we will continue to update the blog with his progress, with or without the continuation of the research study.

*Editor's Note: If you are extremely wealthy person reading this blog and wondering what to do with all of your money, I would suggest contacting and donating all of your money to the Multiple Sclerosis Research Unit at the Ottawa Hospital.

Sunday, May 27, 2012

Chris MS Recovery Update: Two Years Relapse Free

Chris kayaking in Mexico in March. One of the many new
active hobbies we have taken up since his transplant.
I have been feeling guilty now with how little we have been updating this blog since  Chris' transplant, but to tell you the truth, there is not much to report on anymore. And no news is good news, right?

However, we are very excited to announce that Chris has hit a pretty big milestone this month. He is now two years relapse free. It is hard to believe that two years ago, Chris had started having a relapse every other month and was rapidly declining, and now he seems to be only getting better. The difference in his life is pretty significant.

Sure, Chris still is unable to run, but he can ride a bike further and faster than I can, and is stronger than ever before.

Chris might not have the greatest memory and never seems to remember anything that I tell him, but I don't ever recall a time in our seven year relationship when he did have a good memory. And I still have yet to meet anyone that thinks that their husband/boyfriend remembers everything (or anything) they say.

And, Chris may still have a hard time walking long distance in cool weather. But really, who likes to go on long walks when it is cold outside anyway?

Speaking of long walks in cold weather, we participated in the annual MS Walk on April 29, and were able to raise $3,129.31 for the MS Society of Canada. It was, however, an extremely cold morning for the walk. I think it was about 3 degrees celsius and extremely windy. As we have mentioned before, Chris is different from most people with MS, and is actually cold-sensitive (most people are heat-sensitive). This means that Chris actually finds that his MS symptoms actually get worse in cold weather.

Despite this, Chris was able to finish the 5km walk without a problem, which marked a big difference from the year before. Last year, Chris experienced really bad hip pain from the limp he developed during the walk, and was forced to stop throughout the walk to rest. This year, Chris had no problem keeping pace, and finished the walk without a break or complaint.

Next month, Chris has his biannual MS research appointment, where they track his improvement following the transplant and we will be sure to let you know if Chris has his EDSS score lower again. Fingers crossed!

Saturday, March 3, 2012

Chris' Recovery Update

This winter Chris has been really dedicated to improving his strength and balance, so that his EDSS score is even lower at his next appointment. 

Chris accepting a volunteer award from the Multiple
Sclerosis Society of Ottawa for his being one of the
top five fundraisers.
We have joined a new gym and are now making an effort to go four or five times a week. I have even convinced Chris to take a yoga class with me to increase his core strength and balance. Before we started, Chris was notorious for losing his balance when doing simple things, even when turning his head to quickly. Now, he is holding tree pose with the best of them (he is probably not going to appreciated me sharing this). 

The biggest improvement we have seen has been Chris' skating abilities. Chris, a stereotypical Canadian male, grew up playing hockey for 10 years. And after he stopped playing in a league, he was always game to play every opportunity he had. Chris even taught me to skate as one of our first dates. 

However, about four years ago, we started to see Chris' skating abilities deteriorate. The last time he had tried, he fell (hard) multiple times due to his weak ankle strength and poor balance. He had to hang on to me for support (a total role reversal) and eventually gave up and swapped his skates for boots. 

Two weeks ago, since Chris was finding it easier to bike and ride the elliptical, we decided to take a trip to the local arena and Chris skated again for the first time. It was a HUGE improvement. While we are not contacting the Toronto Maple Leafs (yet), Chris was doing laps all on his own and looking strong. The best part was how happy he looked. Seriously, it was like he had been drafted by the NHL. I had to convince him that I was near frozen, before he agreed to go.

The other big update is that we have signed up again to do the Ottawa MS Walk to raise money for the MS Society of Canada. We did the Walk last year, and our team placed fifth overall for team fundraising. We are trying to do even better this year, with a goal of $10,000. It's a huge goal, but after seeing the difference that the MS Society is making in Chris' life, we are completely dedicated to helping improve the lives of others with MS. 

If you are interesting in donating, please visit our team page at: http://mssoc.convio.net/site/TR/MSWalk/OntarioDivision?team_id=4717&pg=team&fr_id=1338