A Yank’s Life with MS: Giving back to the body of knowledge
It was important for me, after I had to leave my former career due to multiple sclerosis, to try to stay active and engaged in the community around me. So much of my former life seemed to be connected to “what I did” that it was a pretty tough transition for me. MS had taken so much from me already; I didn’t want to see it take any more.
One part of that desire to stay engaged stemmed from my understanding of society. I believe that it is important for everyone to give a little something to the greater “Us”. Having my income slashed, my resources tapped and my energy level zapped, I didn’t know how I could continue to give back when it felt I mayn’t have enough in the tank to take care of myself. That is when I stumbled upon ClinicalTrials.gov.
Debunking clinical research myths
I had very little understanding of the process of clinical trials or research studies and had many preconceptions which proved to be false. First, there are A Lot of studies and trials out there (over 1000 MS trials are currently listed on the site).
Second – and this was important as I wasn’t sure that I wanted to take an “experimental” drug – not all studies are drug trials. There are, in fact, 10 non-drug (sometimes called “quality of life” studies) listed on the MS Society’s page right now.
If it’s a drug trial that you’re interested in, it’s important to know the facts about what these studies look like, what are the potential risks and what will be expected of you. Most studies require some “work” on the part of the subject and it’s important to be comfortable with that.
Many trials and studies offer monetary stipend to cover expenses such as travel, parking and the like. I’ve learned through the dozen or so studies of which I’ve been a part that the remuneration does not cover time involved, rather it just about covers costs and inconvenience.
Some studies are complex and require several visits to an MS Centre, while others simply require phone call check-ins with researchers or filling out questionnaires. There is likely a study or trial out there for everyone who’d like to be involved.
Giving back to society
We may not be able to give back to society the way we once did, the way we’d like or the way others would like for us to contribute. What we can do, if we so choose, is to give back to the body of knowledge, something we've all derived some benefit from in our lives with MS.
We have yet to see if ours will be the last generation having to live with multiple sclerosis. If we are not, I feel passionately that I owe the next generation the benefit of my experience as deciphered by the great clinical minds of our day.
If you are interested in taking part in clinical trials or a research study, it is a good idea to speak with your neurologist or MS nurse about it to find out everything that’s involved. Often your medical team can refer you (if you fit the inclusion/ exclusion criteria) to the team conducting the trial.
How about you? Have you been a part of a trial or study? Would you consider if it were available to you?
Wishing you and your family the best of health.
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