How an MS Clinical Trial Changed My Life

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.

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.  

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.  

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 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.   Find out more.  

#ThisisMS  #TakeTHATms #TeamSano #DNA #Research #MS #FindaCure

Me and My Cubii: a Convenient Exercise for MS.

On frequent occasion I am asked to review a product. They’re often sent or mailed and sometimes they are great and sometimes a flop.  

I was rushing through a bunch of emails one day and responded to an email from Dave at Cubii.  OK, Dave, sure, go ahead and send me your product.  I was moving so fast I never did prepare myself for what was to come. 

Well, a pretty hefty box was delivered to my front door.  Hmmmm.  I really didn’t remember it was coming.  

On the outside of the box was an image of a small stepping machine.  

My interest was piqued.  What is this and how could it help me? 

Intimidated at first, I walked around the box for several days.  

Then, one day when feeling especially strong and curious, I pulled the box out of the hall and into the familiar room.  And slowly I began to unbox the gift.  

I was expecting a much bigger project.  I’m still laughing at how easy it was to unpack and set up the Cubii.  

First of all, everything is simple, easy and well-marked. The box even comes with its own screwdriver.  

I don’t think it took even five minutes to put together.  

The Cubii is so easy to set up - Check me out:  

I’m not one for too many gadgets but for someone with balance issues and heat sensitivity, this little device came just in the nick of time.  In fact I was just grousing about the 90F weather and how I was needing some exercise.  

So, I plopped my bum down on a comfy chair and started walking away. Seemed like a great time to watch TV, so I turned on some cooking shows.  Oh, how I love my cooking shows!  

Ten minutes was done in no time.  Wow.  OK.  That was easy!   

I don’t have a desk that will work with the Cubii, because that would be cool.  Walking and writing at the same time without any chance of falling.  

My Cubii sits in front of a comfy chair in the den. I don’t spend much time there but it’s a nice space.  I can Cubii while watching TV, talking on the phone, playing games on my app or even reading.  The exercise is very gentle. When my legs are stronger, the tension can be increased to make a more rigorous workout.  For now, I’m into gentle.  

Interestingly, my knees felt great after this little workout. The angle seems quite beneficial to my weak and damaged joints. My core is also used while walking.  These pictures show it best: 

It’s super easy:     

I told my neurologist about it and she was psyched.  I am too!  

Now its a part of my morning routine.  Cup of decaf, some morning news and my Cubii.  Thank you, Dave, for reaching out to me!  I appreciate the sponsorship! 

For more information about Cubii click HERE.

This post was sponsored by Cubii. Thank you for helping those with MS live better!