Hi, I am in the US, new to this forum but I spent almost the entire day yesterday reading the exciting posts here... I am already in love with everybody.
I have not had the procedure, had given up hope of having it done prior to all the US studies etc., but now my heart is stirred about the prospect of going to Poland. We can't afford it but my husband and I are looking into it anyway. We would sell our home if we had to.
But enough about me.
I was thinking about all the people who have had the procedure done, with the ups and downs... and some are having a hard time really measuring objectively how things are going because of having to recall the "old" you pre-op vs. the "new" you. I totally understand this. It's sort of like when an old symptom comes back and I think, "Wow I forgot how nasty that was..." because we DO forget.
So... I have an idea.
The Zamboni study used assessments to determine patient progress. What if the people who are having the procedure used the same or similar assessments (to the best of his/her ability)? This is going to seem like a lot but essentially it's a timed walk, peg test (for eye-hand coordination and speed), and a verbal math test (cognitive). Here is exactly what they used in the study (copy/pasting):
Patients were instructed to walk 25 feet as quickly as possible, but safely. The average time of two consecutive trials was recorded.
Patients were instructed to pick up nine pegs one at a time as quickly as possible and put them in a block containing nine empty holes, and once they were in the holes, to remove them again as quickly as possible one at a time. The dominant and nondominant hands were both tested twice, and the average time for each hand was recorded.
The test was presented using a voice recording. Patients had to add a sequence of numbers presented every 3 seconds, each new one to the one immediately before it. The number of correct sums was recorded.
The study used a complicated formula to arrive at overall scores but we wouldn't need to do that. The one thing I do think we should mimic is having a third-party observer monitor and do the timing.
I think we could design our own loosely scientific study using the above criteria. Maybe someone doesn't have a 9 hole pegboard. No matter, create a similar test that can be measured objectively (example, how fast can you pick up 12 aspirin and put them in an egg carton one by one... and then take them out again... it might be different for each person depending on what they have on hand).
Then... before getting treated, measure these things and report the results in your own experience thread. Measure again a few days after the procedure and then (weekly? monthly?) thereafter. That way everyone can see more objectively how well this is working.
If you are post-procedure already, it doesn't matter. You could start testing now, and then measure how you are doing in the days ahead using your first test as a baseline. Of course hearing exciting developments like "I went shopping today without a scooter!" is awesome as well, I know everyone wants that kind of news.
I have a link to the math test if anyone is interested. I just did a google search for PASAT-3.
We would not have to be perfect about it, just be sure each test is administered the same way for YOU. What I believe forum participants would be looking for is YOUR progress, not measuring against anyone else's scores. So it doesn't have to be standardized in the strictest sense.
What does everyone think? Anyone feel like designing our own basic assessment tools that people are likely to have on hand and be able to use?
Re-reading my post it occurs to me that some might think I'm in the medical field or a researcher. Nope, just an ordinary MS patient like the rest of you, a web designer by trade. Just looking for answers.
Sorry for the long post.