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 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.   Find out more.  


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


Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



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!  


  

I was just diagnosed with MS. Now what? Conquer MS with Self-Care

I needed this today.  Time to reNew You!  (Or me in this case).  Anyways I enjoyed reading through here and reminding myself what it means to do some Self-Care.   

New to MS?  or want to feel better with your existing MS?   Time to Conquer MS with Self-Care.

There is so much to cover with this title which is why my new book is in production!   But in the meantime take a look at these comments and tips.  Most tips below are linked to articles that I have written as a Patient Expert, Health Journalist and Life Coach.  Please click on the link to see studies, articles and more.  

Conquer MS with Self-Care


1.  Take a deep breath.  It will all be OK.  You are in for a change, but the levels vary for everyone.  Just know that things will get better and life will continue.  MS hits everyone different.  It will be important to be very compassionate toward yourself and your life as this disease unfolds.    

1.    Find a good neurologist – an MS specialist.
2.    Understand you are going through a change.
3.    Emotional balance may seem to slip away – seek help. 
4.    Talk with your MS Dr. regarding Disease Modifying Therapies (DMTs)more
5.    Love YourSelf!  Its good for MS!
6.  Check out My Favorite Resources Page - full of supplements that have worked for me.  I am not a doctor and these are affiliate links. But this routine has helped me for awhile now.  

2.  Modifiable risk factors:

MRF's are choices we have control over. Things we can start or quit depending upon our needs.  While none of these in particular cause MS, there is substantial proof that the following actions are beneficial for MS patients:

1.    If you smoke cigarettes, quit. 
2.    Reduce, respect or quit alcohol.  
3.    Limit salt intake.
4.    Reduce, respect or quit caffeine
5.    Do not use artificial sweeteners such as aspartame  (excitotoxins)
6.    Take additional Vitamin D(if low)
7.    Take Vitamin B12 (if low)
8.    Talk to your doctor about an NRF2 activator such as Protandim™ to fight oxidative stress. 
9.    Eat a healthy diet.  Nutrition is everything!
10.Eat a diet high in fish
11.Talk your doctor about Taking probiotics– health begins in our gut.  
14.High-dose biotin and potential for MS. My FAVORITE high dose biotin is Myetin.  Click to Order. (affiliate link)
15.Creating your own health:  using diet and nutrition to help MS

My FAVORITE probiotic:  VisBiome.





3.  Complementary therapies that might interest you:

3.   Massage




4.  You may find these fact-checked articles and “MS connections” interesting:

1.    MS and Epstein Barr Virus
2.    MS and antidepressant
3.    MS and decision-making
4.    MS and Sunshine
5.     MS and stem cell treatment
6.     MS and brain stimulation
7.     MS and horseback riding
8.     MS and laughter therapy
9.     MS and sense of smell
10.  MS and Exercise



5.   Life-skills.  Tips  and articles.  

1.    Connect socially at #BelongMS APP and reach a world of support. 
2.    Start a hand-written journal.  Handwriting is great therapy.  
3.    Build your support team.  Write down who is on your “Team”:  friends, family, doctors, pharmacist, nutritionist, massage therapist, yogi, God, whomever works for you. This list will grow and evolve during your MS.  
6.    Why me?  3steps to managing your angerwith MS.
7.    For better health, watch your words.  
8.    Can video games help MSsymptoms?  
9.    8 cooling and healing rituals for summer.
10.Get outside for 5 stress-busting exercises.  
11.Superhero saladrecipe for summer
12.3 recipesto help transition into spring. 





Contact me for any question!
and remember, together we've got this! 
 
Conquer MS with Self-Care