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.
Every week is MS Awareness week for me and those of us with and MS and loving someone with MS. That being said, I love that we have our own special week. I think that they should call it MS ACTION week, so it is more inspiring to actually DO something about MS rather than just be aware.
If you want to celebrate MS AWARENESS ACTION WEEK with me and DO something about MS, here are a few suggestions to support my mission to donate $1,000,000 to the Myelin Repair Foundation in search of a CURE FOR MS
4. Ask me about Guest Blogging or Selling my photography on commission!
5. I would love to display images in your favorite bike or surf shop or even a great restaurant that is looking for some color! Email me contact info and recommendations: courtney@therideproject.com. There is no cost to the business you recommend to feature an image from therideproject.com.
6. Buy a signed, numbered print for yourself or someone you love. Click here!
7. Donate to one of The Ride Project teams or ride with us! Visit our team support page.
8. Tell your Neurologist about theRIDEproject and ask him/her to buy a print for their office waiting room to support MS research.
9. Blog about theRIDEproject or include a link to the website!
10. Tell me what you think! Send me your feedback and great ideas.
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.
Check out this great video featuring MSer Kendall Freeman, Neurologist Elliot Frohman and Baron Baptiste of Baptiste Power Yoga Institute. You can order your free DVD here:
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)
I know that one of the first places people newly diagnosed with MS go, is the internet. They search for answers. They search for help. They search for advice from others that have Multiple Sclerosis. You cannot learn everything you need to know from a neurologist. In fact, I don’t think you can learn everything anywhere. Learning how best to live with, and fight MS comes from many sources. Then, it is up to you to take the advice that helps and leave the rest behind.
What would you tell someone newly diagnosed with Multiple Sclerosis?
Yep, the holiday season officially kicked off Thursday and here we go! I love Christmas time but some years, I do more shopping, decorating, baking, creating, mailing, visiting and eating instead of reflecting and enJOYing. Last year, we took off to Mexico and I really got my JOY on. This year, we are staying home to celebrate with friends and family. I am so excited to spend time with the people I LOVE. I am really looking forward to the JOY of it. With the holidays, stress sometimes creeps in and I am going to do my best to keep it simple and low stress.
Julie, an MS blogger posted a great blog about holiday hazards for people with MS. I am definitely affected by some of the things she mentioned and I think it will help my friends and family to know about them. Sometimes it is hard to ask for what you need or try and set expectations that some may interpret as frivolous but I think for the most part, honesty about limitations will make for a more peaceful (relapseless) holiday season.
The six hazards that Julie mentions are: too many people, too much noise, infection risk, losing sleep, stress and getting too hot or cold. Most of these speak for themselves and many of us suffer from stress and losing sleep, with or without MS. The things that I want to talk about are the first two hazards.
#1 Too Many People: Most of my MS is not noticeable, in fact, if you didn’t know me, you would never know I had MS. One of my best invisible symptoms is mild cognitive dysfunction. If too much is going on, I get lost and frustrated. I know I was not always like this. I do much better with small groups of people or one on one conversations. Even if I am talking on the phone and someone in the room asks me a question, or asks me who I am talking to, I lose my train of thought. My daughter has told me things in the grocery store that I have no recollection of because I was so focused on picking out vegetables or noticing a magazine headline that I could not absorb what she was saying at the same time. I heard her talking but couldn’t process the words. I work much differently than I used to. While I used to be able to effectively carry on two or three conversations, check email and write a proposal for work, I find I am much more efficient if I do one thing at a time. Holiday relevance: If you are telling me something or we are having a conversation and I don’t seem to be paying attention. I am not bored or uninterested, I am MSishly distracted. It’s ok to bring me back to the conversation.
#2 Too Much Noise: I would probably change this to too much noise or activity. This is very similar to #1 in that I really need to focus on the task at hand. For instance, if I am cooking (especially a new recipe), I can’t answer questions accurately or focus on something else. It is also tough for me to have several people talking around me in a small space if I am trying to accomplish something else. If the TV is on and a conversation is going AND I am making a list or cleaning the kitchen, and someone asks me a question, it can make me really frazzled which sometimes comes off as BITCHY! Holiday Relevance: If you start helping me in the kitchen and I say, “please sit down and enjoy, I’ve got this”, go sit down. I know you want to help but sometimes having a little space is helpful. I will not be offended if you offer and please don’t be offended if I decline.
If you have MS and can think of ways that will help you get your JOY on during the holidays, don’t be afraid to ask. When I say something about my MS, the response I usually get from my friends and family is, “of course, why didn’t you tell me that before?”
I am usually the last to know that I am having an MS relapse. I am also the last to call it a relapse even when I know that is what it is. Honestly, I don’t have time to relapse or slow down. I know that it is better when I do slow down. I know that it is better when I make time for a daily yoga class and while I have the best of intentions, it doesn’t always happen.
I know that part of my problem, might be, a little bit of denial, but mostly, I just don’t notice that I am not feeling well until I am REALLY not feeling well. I have come up with a list so that moving forward, I can watch the for signs and recognize a relapse before everyone else.
I know I am having an MS relapse when:
Mark (hubby) tells me to “take it easy”
I crave bad carbs
I go to bed at 6:30 pm
The ground moves
I feel indifferent about things I am usually excited about
I want to stop all work or physical exertion at 3pm
I don’t want to get together with friends
I think I have the flu
I can’t focus or multi-task
My mom uses an extra nice tone of voice when we are talking
I can read a book, watch a show or have a conversation and not retain any of it
