Thursday, May 26, 2011

MS Walk and Research Study

To all our incredible donors: Team Glazier thanks you!

As we mentioned previously on this blog, Chris and I decided to participate in the Ottawa MS Walk this year. We feel a huge amount of gratitude to the MS Society, who  funded the stem cell transplant trial, as well as the research study that Chris is now participating in.

We also feel a huge amount of gratitude to our friends and family that signed up to join our MS Walk team,Team Glazier, and generously donated. In total, we raised approximately $6,500.

For anyone still interested, we can still accept donations for the MS Walk until June 13

At the walk, I was interviewed by CTV News about Chris' experience (they had read our blog!). Now some people claim they saw me getting emotional, but I still stand by the fact that I was cool and calm.

While the walk was such a great day, Chris did have some difficulty walking the 5 km. Chris finds that especially in the cold his muscles in his left leg seem to contract and it puts a lot of pressure on his hip. For the last 1 km Chris was definitely in a lot of discomfort, but he pushed through and finished the walk. Chris has been doing so well since the procedure, we sometimes forget that it is not an instant fix.

Finally, we have received Chris' schedule for the MS Research Clinic. Chris will be spending the morning at the clinic on June 13 (exactly 6 months following his transplant). He will also be getting an MRI on June 17.  This means we will have a much better idea on how this procedure has affected his MS.

Monday, May 2, 2011

4 1/2 Month Update

Chris had a week full of appointments this last week.

Last Tuesday, we went to his last transplant appointment. Chris is recovering so well that he has been moved to the MS clinic and will be monitored by Dr. Atkins. His blood work came back much better this month and were all within the "normal range" for a transplant patient.

Next, on the weekend Chris went and had his IVIG transfusion. Unfortunately, I came down with a really bad flu (Chris was taking care of me this time!), so Chris had to go to the appointment alone. The good news is even though he was around me all weekend, he hasn't yet shown any signs of feeling sick. This new immune system he has seems to be immune to my germs.

Chris today vs. Chris in  January. This would have been the difference
 Dr. Atkins would have seen today.

Finally, today Chris had his first appointment with Dr. Atkins and the nurse co-ordinator with the MS clinic. Dr. Atkins had not seen Chris since he was an out-patient in January and when he walked in the door he was really surprised with how great Chris looked.  If you look at the pictures it is a pretty huge difference. We went over Chris' progress to date and it really is great to talk about how far Chris has come in such a short time period. He really is back to feeling how he did before the transplant.

We also learned about a post-transplant study that Chris will start taking part in. In 2010, the Multiple Sclerosis Society of Canada funded a research grant for "Long Term Outcomes Following Immunoablative Therapy and Autologous Stem Cell Transplant for Poor Prognosis MS." This study will follow any MS patients that have undergone a transplant to see if this transplant stops the progression of MS in the long term.

To date, all of the participants in the study have not progressed. Also, they want to see if any of the participants have improved EDSS scores. This is the system that is used to determine the level of disability with MS patients. This means that starting in June Chris will go in for a number of tests and an MRI to track his MS. The test includes a timed walking test, a math test, a vision test, a peg test (you need to place plastic pegs in holes) and, of course blood tests!

While Chris has never had a formal EDSS evaluation, but his neurologist did say he was about a 3.5 on a scale of 10. To give perspective on what that number means, a person with a  5 on scale is able to walk 200 meters without aid or rest, a person with a 7 is completely restricted to a wheelchair , a person with a 9 is completely restricted to a bed, but is able to eat and talk. 

There are people that have undergone the transplant that have improved substantially on the EDSS scale, sometimes going all the way down to 0.5, which means while there are still signs on the MRI scan there are no disabilities present.

We will now be using the blog to update you on Chris' progress, so hopefully the next time we blog in June, we will be able to tell you if Chris is improving!