Tuesday, December 13, 2011

One Year Update


One year ago today: Chris getting his new stem cells.

Today marks one year since Chris recieved his new stem cells (what we consider his new birthday).  To mark the occassion, Chris spent the day at the hospital yesterday having a series of tests completed for the research study.

These were the same tests that Chris had back in June. This included math tests, eye tests, walking tests, and of course a full neurological exam.

It was nothing but great news. First, they were able to tell us that Chris' MRI shows no signs of new disease activity. If you compare this to the previous year, where Chris had a huge decline, this is unbelievable. They aren't able to determine yet if Chris has had a reduction in lesions. The MRS scan that Chris had in July will be used to track the size of Chris' lesions, and unfortunately Chris will not have his second scan until next July.

However, while we don't have a scan that proves that Chris is improving, Chris has seen huge improvements in his EDSS Score.

The Expanded Disability Status Scale (EDSS) is a rating system used to classify the level of disability for people with multiple sclerosis. The scale looks at key functional  systems that are affected by multiple sclerosis.
The functional systems are:
  • Pyramidal (ability to walk)
  • Cerebellar (coordination)
  • Brain stem (speech and swallowing)
  • Sensory (touch and pain)
  • Bowel and bladder functions
  • Visual
  • Mental
  • Other (includes any other neurological findings due to MS)
The scale is from 0-10 with a 0 indicating a normal neurological exam, a 9.5 indicating a person being totally helpless and bedridden and unable to communicate effectively or eat and swallow, and 10 indicating death due to multiple sclerosis.

Prior to this procedure, a neurologist determined that Chris was a 4.0 on the EDSS scale. This meant that the MS was affecting several different functional systems with major and minor disabilities. The person is fully ambulatory without aid, and is up and about most of the day (12 hours) despite relatively severe disability. He or she is able to walk 500 meters without aid or rest.

We found out yesterday that the neurologist who saw Chris in June determined he was a 2.5 at that time. This meant that there was mild disability in one functional system or minimal disability in two functional systems.

We also discovered that the neurologist who saw Chris yesterday determined that Chris is now a 2.0 on the EDSS scale. This means they determined that Chris only has minimal disability in one functional system.

That is such a big change in just one year. We were ecstatic to hear about Chris' improvement. 

Chris also met with Dr. Atkins and he decided that Chris no longer needed to be on any of his medications.This will mark the first time since 2007 that Chris will not be on any medications. We can throw out his sharps container because we know Chris will never need to take another injection for his MS again. We will finally have room in our medicine cabinet for normal drugs, like Advil, instead of polysyllabic drugs, like famciclovir and zopiclone.

We are now busy getting ready for Christmas. It will be a lot different from last year for many reasons. Mainly, we are so thankful to be able to spend this holiday season with friends and family instead of nurses and doctors (no matter how great those nurses and doctors were!) As hard as it was spending Christmas in the hospital last year, we are so grateful that Chris had the opportunity to have this procedure.

Happy Holidays Everyone!

And Happy Birthday, Chris!

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