I was diagnosed with Multiple Sclerosis in 1998. I knew nothing about the disease and like many of us could only recall several people severely disabled by this insidious illness. I thought I had better hurry up and do something outrageously out of character and decided to run the Boston Marathon. I wasn’t a runner, I wasn’t even an athlete. I just knew that MS took away a person’s abilities and I wanted to use mine before I lost them.
Now, twelve years later, here I am back from my second attempt on Everest having climbed 6 of what is referred to as the “seven summits” as well as many other mountains around the world.
I am nothing out of the ordinary. I am self taught. I learned the value of the therapies we now have available to us that weren’t available prior to 1993. I learned about being committed to Copaxone and using the severe conditions on a mountain to highlight how easy it is to take a daily injection. I learned that the benefits of MS therapy have been well proven and that I intended to push my MS to the extreme (even for someone not living with the disease). I saw the mountains as an opportunity to tell the world what living with MS is really like.
Climbing a mountain, whether the mountain is 3000 feet or 29,000 feet is just like our daily climb with MS. We are scared, it hurts, we’re dizzy, we feel sick and our bodies don’t feel like they are under our control. We can’t always get to the top… we have to take a little longer, try a little harder and dig a little deeper. And sometimes the mountain is bigger and more formidable than our MS will allow. But you know what? That’s okay because not only did we try. And whatever we accomplish, we did it with MS so we are already a winner right out of the gate.
I am not here to talk people with MS into climbing a mountain, although I have always said since I started climbing that I would love the company! Far more important than climbing is that I want to educate, motivate and most importantly, encourage those living with MS to go after their own “mountain” whatever that mountain may be. Maybe it’s learning a foreign language or volunteering in a school. Maybe it’s going to the mailbox and using your walker instead of your wheelchair, and maybe you only get to the back door. That’s okay! Because not only did you do it, you did it with MS, and that small triumph is where you will feel and hear your soul.
I have climbed Mt. Everest twice but the summit eluded me. But did it really? I took MS as high as it would allow me to go and had to face the terms of my original mission - to see just how hard and how far I could push back. I had to face my own personal boundaries… the boundaries put upon me by MS. Yet, I have no regrets. I have none of the ‘what ifs’. Rather I have been able to experience an incredible journey with and for and despite MS and I’m not done yet! MS may have altered the outcome of my original Seven Summits mission, but even more importantly it has whet my appetite for the next adventure around the corner. Just wait and see what I plan to try next!
Don’t let your MS stop you, keep pushing, keep challenging your mind and body. You will be amazed by what’s around the next corner too!
Want to climb with Wendy or learn more about her adventures? Visit Wendy’s blog to keep in touch!
If you’d like to have your MS story featured to inspire and educate readers, please email me: courtney@therideproject.com. It doesn’t matter if you have a blog or not, take MS drugs or not, are dealing well with MS or not, your story is important!
When I was first diagnosed with Multiple Sclerosis, I thought I wouldn’t be able to be as active as I once was. Luckily, I learned quickly that exercise is great therapy for someone with MS. Because MS patients are all at different physical levels, you have to start where you can.
Studies show that exercise can ease some MS symptoms, as well as strengthen your heart and immune system. There is a great video here about a strength training study for MS patients. While most exercise principles apply to all people, not just those of us with MS, we have to be especially careful about not overdoing it. I can recall when working out meant “no pain, no gain” & “feel the burn”. Now however, I am more aware that becoming overworked can result in a relapse.
Heat sensitivity can also be an issue. If I really push it and overheat, my fingers and toes go numb, and that is a strong signal to slow down! There are cooling vests available for different types of exercise, which is a great option, especially if you are working out in warmer climates. Remember, you don’t have to be sweating to burn fat. Using a heart rate monitor can help you assess if you are working at a fat burning rate or building cardiovascular strength. There are many options, but I go for simple. My Polar Heart Rate Monitor lets me know, at a quick glance, my heart rate, the time and calories burned. (My watch isn’t pink like this sample but I love that there is a pink one available. My birthday is right around the corner!)
I broke a rib two weeks ago so for me so my idea of exercise today is a gentle walk around the block. I am looking forward to getting back on the yoga mat, into spinning classes and a little tennis but only when I am healed and ready. Start slow and build.
Check with your local MS Society for exercise classes designed for MS patients.
The internet is such a great resource when you are diagnosed with Multiple Sclerosis and it will continue to be a wealth of information and offer great connections as you learn to live with the disease. I am still learning after almost four years of being diagnosed! Sometimes there is so much information though, that it becomes overwhelming. Following are my recommendations for must visit websites.
Start Here
1. National Multiple Sclerosis Society- Here you can get detailed, straight forward information about MS symptoms and treatments, learn how to talk to your children about your diagnosis and find out how to get involved in community events and programs.
2. About.com: Multiple Sclerosis – This site features topics like: Find an MS neurologist, What to expect during an MRI scan and Why isn’t everyone with MS on treatment?
3. Rocky Mountain MS Center – This center is based in Colorado, but the resources on their website are available to patients and caregivers world wide! They offer great information about alternative medicine, clinical trials and a great e-newsletter that you can sign up for to receive regular updates.
4. Multiple Sclerosis Foundation – Another wealth of information, The Multiple Sclerosis Foundation provides a comprehensive approach to helping people with MS maintain their health and well-being. They offer programming and support along with educational programs to heighten public awareness and promote understanding about the disease. All of their services are provided free of charge.
5. Brass and Ivory’s Resource Page – You cannot miss this site! Here, you will find lists of resources for MS Forums, MS News and Articles, Patient Assistance Programs, Research, Health Communication and connections to MS Blogs. Lisa Emrich, the founder of Brass and Ivory is an MS patient and advocate and always willing to answer questions or point you in the right direction.
Need a little help?
6. MS friends – This hip site has a primary mission: to improve the quality of life for people with Multiple Sclerosis, for their families and friends. They even have a hot line so you can call and talk to real people about your MS concerns: 1-866-msfriends.
Blogs - I think it is essential to read about, and connect with other people going through the same thing you are. That being said, it is important to find people, whose point of view you learn from, connect with or enjoy reading. There is a lot of doom and gloom out there and my recommendation is to steer clear!
7. Life with MS – Trevis Gleason is one of my favorite MS bloggers. He is smart and thoughtful and presents powerful information in a very unique way. He has attracted a great community of readers that have great feedback through comments. I always learn something from Trevis AND his readers!
8. The Myelin Repair Foundation blog – I donate 50% of all sales from my photography to the MRF. I believe in their mission and research model. Their blog has been an added bonus for me! Not only do they talk about current research and what’s happening at the MRF but they also feature guest bloggers with MS who discuss things like Dating and the Single MS-er and Keeping Sane while Coping with MS.
9. Considering Tysabri as a treatment?- Before I started Tysabri 37 months ago, I read ALL of the information on Lauren’s site. She is an MS patient and advocate who knows her stuff. She is pro-Tysabri but there is enough information aside from her opinion that is crucial to consider in making this big decision.
As you know, I think you suck. I am stronger than you think. In fact, I just got home from an eighty minute spin class and burned eight HUNDRED calories. What do think about that?!
Stem Cell Transplants and CCSVI – These things are really happening! The following MS patients are blogging about their experiences and results. They are fighting MS and making history!
When I was first diagnosed with Multiple Sclerosis, I did a lot of thinking about why this happened to ME and how MS was going to impact MY life. It didn’t take long for me to see that I wasn’t the only one with MS. On the day that I received my diagnosis, my whole family was given this disease.
My parents and sister and other family members got to experience the diagnosis with me. My daughter learned about MS and how we are going to fight it when she was 11 years old. To this day, I still think that telling her was the worst part of this crazy adventure. My friends and family and sometimes my co-workers live with my MS. They are thinking about it, or getting me through it, putting up with me when I don’t feel 100%, raising money to fight it, researching treatment or asking me about it. Because of me, MS is part of their lives. I am so grateful that they make the best of it…they are my strong, strong team.
My husband gets to experience MS with me, day by day. I was diagnosed a year and a month after we got married. This has been our disease and our fight right from the start. If anything, I am not as forth coming as he would like me to be about symptoms or bad days. I can’t begin to tell you all of the things that he does to make me healthy, to make me feel better, and to take my fear away. I have always been very independent and self sufficient but having him by my side, especially with this disease, makes me feel safe in being vulnerable and dependent on him.
As frustrated as I sometimes get, I know that I am not the only person impacted by MS. In fact, it is often the people that live with people that have MS that suffer more. (I know I am not a dream to be around after a tough day or week). Mark sent me this email after a relapse a few years ago.
I HATE the fact that my wife is sick.
I LOVE that she rallies and makes us a wonderful dinner.
I HATE the feeling of being not good enough as a husband and not being able to do anything more to comfort my wife.
I LOVE that my wife has a great family and support team.
I HATE that one of my wife’s greatest joys,(Traveling)can bring out her sickness.
I LOVE that even when my wife is feeling her worse I see beauty,strength and an inner calmness.
I HATE going to the gym when my wife is home with a metallic taste in her mouth.
I LOVE riding with my wife on our bicycles.
I HATE people that bitch about minor things.
I LOVE that my wife puts up with me when I am that person bitching.
I believe that patients are not getting an adequate return on the billions of government, non-profit and industry dollars being spent on the research and development of new patient treatments.
I believe that academic scientists, government funding and regulatory agencies, non-profit disease research foundations, commercial biotech and pharmaceutical companies, and entrepreneurs should aggressively seek new ways to accelerate the pace of medical research and the development of new patient treatments for the billions living with diseases who can’t afford to wait.
I have blogged about my experiences with MS drugs (Rebif, Avonex, Tysabri, Solumedrol and others) and have a few posts about stem cell research but I usually don’t write about all of the drugs in clinical trials or even all of the MS drugs approved by the FDA. I pay attention to it, but thanks to other great bloggers, I don’t need to be that source of information. That being said, if I read about a new drug or trial that gives me hope and makes me smile, I feel compelled to share!
So, here it is. Our friends at Biogen Idec have started what it believes to be the first-ever clinical trial of a drug with the potential to regenerate the fatty protective coating around nerves that gets damaged in people with multiple sclerosis. Can you say, remyelination? I understand this is just the beginning of a long process but I am overwhelmed that BIIB-033 is going into Phase 1 trials with the potential of giving me back my myelin!
“Biogen scientists hope to change the paradigm of treatment with this newer drug, by developing an antibody that blocks a new target called the Lingo-1 protein. By hitting this marker on cells, the company hopes that it will restore the body’s natural process of building a fatty protective layer around nerve fibers, known as myelin.”
Wow, Tysabri and the possibility of new myelin?! We love to complain about the exorbitant costs and processes of drug companies, (and often rightfully so) but in this case, I just have to say…Thank you Biogen Idec.
Yesterday, I asked you via blog and Twitter what advice you would give to someone newly diagnosed with Multiple Sclerosis. Your feedback was great and as it turns out, most of your advice could be for anyone with MS or anyone dealing with less than perfect health. Here is what you had to say:
From Tammy B.: Don’t panic! Call your local Multiple Sclerosis society or find them online and request information for the newly diagnosed. Work on what symptoms you had now, and not what my develop later on in life. If balance is an issue, canes come in many lovely colors these days. Seek out others in same situation and ask questions. Never be afraid to ask questions.
From Mark: There are a lot of resources available. The Nat’l MS society (nmss.org) has a program called “Knowledge is Power” and you get a “lesson” once a week by email. MSFriends.org has a free 24/7 support line staffed by people w/ MS (866-MSFRIENDS)
I agree w/ Tammy – get educated and seek out others; build community; get involved. We’re all in this together.
From aniaArt: Find the new rhythm to your body. Rest, relax when you can & don’t go all “out”. ( I tell myself this daily…lol)
lets me know, at a quick glance, my heart rate, the time and calories burned. (My watch isn’t pink like this sample but I love that there is a pink one available. My birthday is right around the corner!)
