In 2001 I couldn't walk or see unassisted. MS hit me hard and fast. Life changed for the worse, then it changed for the better.
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| Self-care includes walking, strolling, yoga and exploring while being compassionate to my and my MS! |
People often asked me what it was that inspired this change. It all started when I was included in a clinical trial way back in 2001. It was a trial for an actual vaccine, a T-cell vaccine by Dr. Leslie Weiner at USC. I basically started looking into a more holistic approach to taking care of myself, using more self-care.
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| Yoga has always been part of my regime and I suffer without it. Keep it up! |
Joining research
During this time there were only three approved disease modifying treatments (DMTs), all injectables. I was on Copaxone but my tests were showing progression. My medical team wanted me in this study.
Because the MS hit so hard and fast, I didn’t know what was going on, but knew that I needed help. Newly diagnosed I was so curious about this disease and what I could do to help. Twenty years ago there was not much information available about living with MS. Today there is much more good research and many more stories available.
Because it was a double blind study, I didn’t know if I was on the "vaccine" or the placebo so I took everything into account to focus on self-care. We did not use that term back in 2001, but that's exactly what I did. I spoke with my doctor, called friends, other MSrs, experts and did a lot of research. I found what works for me from acupuncture to yoga, from supplements to diet and lifestyle changes.
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| my moment of zen....enjoy everyone of them! |
Supporting myself and others
I was so excited to be helping others with research and potentially helping to find a cure that thoughts of residual benefits didn’t come to mind. But soon I found myself studying holistic nutrition, becoming certified as a life coach, getting more into my yoga and other practices. I was not on a DMT so everything I did mattered, or so it felt that way to me. During the study I was under constant care, with regular MRI’s, occupational therapy and other classes and medical reviews. It was a journey of exploration and learning.
It was because of this trial that I started GirlWithMS.com. I wanted to share my positive result of finding new life hacks for self-care with everyone associated with MS.
There is much attention that we can put on ourselves to help us move forward in life, from working with doctors, using disease modifying treatments, finding natural, holistic approaches, and joining clinical trial and seeing what research is going on in the medical world.
Another thing that I discovered was that I could really nerd out on research. It's absolutely fascinating looking at trials and studies and seeing what these neurologists and others are doing to help the lives of those living with MS or preventing it in others.
Exploring different kinds of research
Research and clinical trials run the gambit in size and activities. Some are remote, some must be near certain facilities. Some might be sponsored by a pharmaceutical company testing a new drug and others might be from a university looking into the potential causes of MS.
There is something to be said about being part of a trial or research. To be part of that experience that could find answers, that could help others live better, or even yet, find a cure for MS.
At one point I was complaining to a cousin about the amount of MRI's and reviews my studied required. Quickly stopping me in my tracks, he said, "you're doing it for you, for science and you're doing it for others,” ringing a sharp bell in this noggin and I kept on.
As more research is performed on MS, the more chance we may have for finding a cure. Yay! But in the meantime, if it's your thing, it’s possible to help by becoming a part of a trial that works with your location, schedule and type of MS.
Learning to understand the genetics of MS
There is also a growing volume of research looking into how genetics (DNA) impacts different conditions, including MS.
One company that I find interesting is Sano Genetics in the UK. Sano’s mission is to accelerate the future of personalized medicine by connecting people to research opportunities, with a particular focus on better understanding the role of genetics in different conditions.
I had already collected a copy of my DNA data while doing genealogy with another company, so I simply downloaded it from there and uploaded to Sano Genetics.
By uploading my DNA data to Sano I was able to explore research opportunities that might be relevant to me, based on my health information and DNA data, as well as discover my free Personal DNA Reports - which show how my DNA influences traits such as my eye color and caffeine intake.
Plus, data security and transparency about how your data is used are a big part of Sano’s philosophy. You can always control which researchers get to see your data, and can change this or delete your data at any time by simply changing your account settings.
Sano has a growing team of MS advocates - as many of us have found research, information and genetic material through their efforts. We call ourselves the #SanoCommunity. Kinda makes me feel like a superhero kid again or something.
But most important is that I wanted to share my experience of participating in research, as you may find it interesting to explore and join some of Sano's research projects.
