 Exciting News!! Insurance has covered my electronic foot drop system! I have been using a loner system for the past two months and it has been incredible, I'm walking with no cane or braces at all. I'm even gaining strength in my previously gimpish left leg. I will fill everyone in more on the process I used to get it covered in an upcoming blog, I just had to tell everyone!! Fight on!!
Be a Warrior Today, Donn  I saw an inspiring piece recently on CBS news about a woman with MS who is about to take part in a pioneering stem cell experiment.
http://www.cbsnews.com/news/ms-patient-to-take-part-in-pioneering-experiment The Tisch MSRCNY Phase I Clinical Stem Cell Trial was featured on the CBS Evening News on Monday, January 20th. For those of you who missed the segment, CBS has posted the video and a text article on the study and its approval. I feel like the medical community gets a little closer each day to finding a cure to MS and it's nice to see it being discussed in such a mainstream news forum. Feeling hopeful, Limitless Lizzie P.S. A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you.  Cold weather makes my muscles stiff and twitchy so with the Arctic snap that has been going on for what seems like centuries it’s been rough. I’m starting to believe that my MS hates the cold as much as I do, maybe even more!
It used to be fun when it snowed going sledding, having snowball fights and building snow forts. Those days are long gone replaced with shoveling, shoveling and more shoveling...oh and driving 4 MPH everywhere. Also it’s been so cold that you can’t even venture out to enjoy yourself without running the risk of frostbite or turning into a demylinated popsicle. Luckily I live in the best neighborhood ever and snow removal is often taken care of by one of my many awesome neighbors, thanks guys! Getting in and out of the house has been extra tough due to ice that will not go away. Salt doesn’t even work when its -20 degrees outside, so how am I supposed to have a chance? Since I’ve been walking so much better lately I’m trying to take my time to avoid a slip and fall at least both of my feet are equally as cold now. The tricky part for me is that my MS is very heat sensitive so I can’t even get in a nice hot shower to warm up or else exhaustion sets in and my hands become mostly useless. Either way too hot or too cold and my MS gets cranky, so touchy for such a terrible disease! In order to thaw out it’s been a steady diet of warm lemon water or some veggie soup. How have you been dealing with the cold weather, and what are some tips for getting around in the snow that you could share with fellow MSers? Be a Warrior Today, Donn  Just returning from a trip to Virginia to see family. Here are some thoughts and ideas for travel after being diagnosed with MS. First and foremost, everyone's symptoms and tolerance levels are different. I find when I travel, although I can walk with a cane, I always order a wheelchair. Connecting flights can be tricky. My first flight was delayed and with fifteen minutes to spare, US Airways did all the running to get me to my next flight. After getting to your destination, try to only book activities every other day. Remember, you are not sleeping in your own bed. Fatigue may be worse or just the planned activities may make you need a day in between to relax. Listen to your body. Reserve energy for important events and for your trip home.
Next challenge was the severe cold. My numbness and tingling is twice as bad in this weather. My only advice is layers layers and more layers. A long down coat is helpful, and I find wearing mittens is much better than gloves. Your fingers help keep each other warm. I also know if I am staying outside for a longer period of time, I buy hand and foot warming packs. They work great. Always keep your head covered as I'm sure you are all aware that is where we lose our body heat. Now if you are taking a warm weather vacation, the heat can be taxing on your body as well. I got great advice from my physician. If lying out in the sun, always stay hydrated. Don't let your body temperature get too hot. The heat can bring on pseudo exacerbations and even cause vision changes to the point of "blindness". Take frequent dips in the pool, shower, or ocean which keeps you feeling great. My physician once told me the story of a patient who called frantic from a cruise ship as she had lost her vision..he advised her to take a cool shower and once her body cooled down, her vision was back to normal. Well hoping these small tips help for those readers who love to travel. Will sign off for now, need to pack for Antigua. Stay warm everyone. -- Susan RN  I was diagnosed with breast cancer seven years ago nearly to the date. This time of year always makes me reflect on that particularly difficult time in my life. I would later learn that I had stage III breast cancer and would require extensive surgery and several months of chemotherapy. At first, I thought it had to be a mistake, right? I was in my mid-30s, diagnosed with secondary progressive MS, working full-time in a wheelchair with a toddler to raise. Everyone has their own story and at some point asks the question, why me? I couldn't reconcile that growing-up I was a competitive athlete with no family history of either MS or breast cancer. My husband and I barely had a moment to adjust to the news as we quickly began visiting surgeons and oncologists. We sought three opinions and in the end only one oncologist recommended tailoring my chemotherapy based on the fact that I had multiple sclerosis.
My oncologist, in consultation with my then neurologist, formulated a chemotherapy cocktail of several rounds of Adriamycin and Cytoxan every three weeks instead of the traditional two-week treatment intervals. Once that was done, I then started several months of oral chemotherapy (Xeloda) which would normally be used in late stage breast cancer. This was a customized breast-cancer treatment plan that would avoid the commonly used drug Neulasta that was believed to have adverse effects on patients with MS. The first two oncologists from leading cancer units were not all that interested in the fact that I had MS. I met with three oncologists and only one was eager to work with my neurologist on a plan that met my specific medical needs. All of this to say, if you have breast cancer and MS you may want to get a few different opinions on your treatment plan. While the chemotherapy left me completely exhausted and depleted of all my energy, this seemed typical of people in chemotherapy who did not have MS. In fact, I would argue that the two years following my chemotherapy treatment had temporarily slowed the progression of MS in my particular case. I have been cancer free for nearly 7 years now. I still get butterflies in my stomach before every oncology check-up but I learned to approach breast cancer like I approach most things in life, one day at a time. Limitless Lizzie This recipe has been transforming and evolving for the past few months. I think I’ve finally nailed it, so I wanted to share it with all of you. Especially with all off the cold weather we’ve been getting lately this meatloaf will snuggle up and keep you warm and happy inside.
I use fresh grass fed ground beef from my local organic butcher, if you can’t find a local butcher that meats (get it?!) your needs try looking at http://www.eatwellguide.org/i.php?pd=Home. You should be able to find something relatively close to you. Also while you’re picking up your ground beef grab some bacon...what’s that? You say this meatloaf has bacon? Also to keep this meatloaf Paleo I use Farmer Jim's Small Batch Tomato Ketchup, the Chipotle flavor gives a nice smoky zing to the meatloaf. Most Ketchup is not Paleo or fresh at all but here’s what Farmer Jim had to say “With every other condiment there are all kinds of creative flavors and styles on the market. With ketchup, it's all pretty much the same: a very sweet, syrupy concoction that only vaguely tastes of fresh tomatoes or anything else that might have come from the ground, Farmer Jim’s is trying to change that." If you would like to order some of Farmer Jim's amazing ketchup give him a shout at [email protected] Let him know how many bottles you would like and what flavors and he will ship them out to you. Right now he has Original and Chipotle but there are some interesting flavor combinations coming in the near future. Black Garlic has also added a nice little wrinkle to this wonderloaf of goodness, but if you’re not a fan stick with the white stuff, enjoy! Ingredients 2 lbs of ground beef 3 Eggs, whisked 1/2 Cup almond flour 1/2 Chopped Onion 2 Cups fresh spinach 1/2 cup of Farmer Jim’s Chipotle Ketchup 3 Pieces of your favorite bacon 1 tsp of salt 2 Cloves of Black garlic minced or 2 cloves white garlic minced 2 tbs of olive oil to sauté vegetables 1 Big wood stick or broom Directions
Eat Like a Warrior Today, Donn This past week I had my first craniosacral therapy session. Wow.
I have always been one to attack pain. I feel cheated if I get a massage and it doesn’t hurt at least a little bit. So it was a stretch for me to think that a light touch, that just holding the head, could release both pain and pent-up emotions. It sounds kooky, but maybe because I am still conditioned to think that whatever occurs in a hospital or involves a prescription is more medically legit. Tomorrow I go again and I have never looked forward to a mode of therapy like this. I even decided ahead of time that I would have no goals or expectations for a decrease in my pain level. “This is just one step in my journey of caring for me the best I can,” was my mantra. The best moment came at the end of the appointment, when the Physical Therapist showed me a diagram and the major nerves channels. Each area was where I experience my headaches. Since being diagnosed with multiple sclerosis, my chronic migraines have morphed into face-aches, chin-aches and an aching on the surface of the majority of my head. I had received no explanation up until this moment. It was such a powerful experience that I will include a link to diagrams here: http://www.medivisuals.com/cranial-nerves.aspx If you have been experiencing chronic headaches and have not found relief, I would recommend looking into insurance coverage for this therapy. In Massachusetts, Harvard Pilgrim covers it if it is performed by a physical therapist. If your insurance covers physical therapy, it will most likely cover whatever therapy you get done by the PT. Your Physical Therapist can figure out how to word it to make sure you are only stuck with the copay. --Emily Royce  Once a month on a Saturday morning I head into my local infusion center and receive my Tysabri infusion. Usually it’s not a very exciting three hour stretch. I drink coffee and watch whatever is on the television while I zone out on the iPad or finish up whatever I may be writing as I slowly watch the minutes turn into hours...that is how it usually goes.
Generally I don’t run into fellow MS patients while I’m plugged in and dripping away. Usually I’m the youngest patient in the room by decades and most of the patients are in and out in thirty minutes or so, not in for the full length feature. On this particular Saturday after I was set up and infusing a woman came and sat in a chair near me. I try not to pay attention when the nurses talk to other patients but It was hard to ignore the usual questionnaire that proceeds the Tysabri experience. I didn’t want to invade her privacy and comment on her dripping bag of Tysabri, but luckily she asked me about the iPad! While we got to talking about technology I brought up the fact that I was receiving Tysabri and she chimed in that she too was receiving the same drug. As it would turn out we would have a lot more in common. While talking about our MS diagnosis, therapies, doctors and life experiences it turned out that we share the same exact MS teams, from Neurologist to PMNR as well as physical therapists! I think very highly of my MS team and I asked her how she had gone about assembling the same squad? She had taken nearly the same route as I had by advocating for herself and not settling on anything until she was comfortable. After discussing doctors and meds the conversation turned to daily life while living with MS. While I have found my voice and will happily inform anyone about my condition she is still nervous and struggling with sharing her condition with others. I told her about how I too hid my diagnosis from everyone for months and the immense pressure and stress I had to bear while I gained a foothold in my new life. Once I was out and able to accept that I had MS I grew into a stronger person. Nowadays I know that I will beat MS, no doubt. But in the early days things weren’t so rosy. My question to all of you is, have you come out about your diagnosis? Was it difficult to share and did you gain or lose anything or anyone? I’m happy to have added another star member to my team and now three hours doesn’t seem so long! Fight on! Be a Warrior Today, Donn A Bit About Donn: Donn is 38 years old and was diagnosed with relapsing remitting MS in 2010. He lives with his wife and son in Plymouth, MI.
 With all of the recent trials and tribulations related to my health and MS I am glad that I had meditation to help me through. By no means do I sit in the middle of the park “ohm”ing but I have found that meditation has always been there for me in the worst of times.
In the past few years along with an MS diagnosis I have also had the joy of being diagnosed as suffering from cluster migraines. Any of you out there that have had the sheer pleasure of experiencing a cluster of migraines understand where I’m coming from when I say “go to your hiding place.” For the rest of you here’s a quick explanation, “The term "headache" does not adequately convey the severity of the condition; “the disease may be the most painful condition known to medical science.” (Matharu) In short it feels like a red hot iron is stabbing through your eye and exploding out the back of your head. Not a good feeling and considering that during my last flare up I had nearly 70 attacks in a week, I needed something that would help me out while I waited for the meds to fight back. This is how I got into meditation without even knowing it. While waiting for the headache to kick in I would prepare to “ride the wave of pain” and see if I could ride it out until it passed. Surfing and riding the waves make it seem glamorous; it’s probably more like holding onto a tree during an avalanche. Either way I would hunker down and pick a nice dark color, usually black or blue (fitting) and try to keep it as the only thought in my mind. Slowly breathing in deeply and fully exhaling all the while letting the storm go on around me while I tried to hide or hang on. Sometimes it worked. Other times I wasn’t strong enough and needed to be medicated or taken to the hospital. When the opportunity arose to enroll in a meditation class given by the University of Michigan it was here that I learned that I had been meditating all along. I was given great guidance by our leader Martha and taught how to “"be awake inside without being aware of anything except awareness itself." Being aware of my mind has helped me be aware of my body as it is affected by MS too. If you don't have the opportunity or time to attend a meditation class, check out this link for a website that has free online classes, so you can teach yourself and meditate in the convenience of your own home. http://www.onlinemeditation.org/meditation-class-1/ As I continue on my journey I am reminded of the mantra that I’ve picked up along the way. It is fitting for any MS warrior and it may help you through a time of pain or sadness. “At the core of my being I am silent. I am strong. I am one with the whole earth. I am the mountain.” Fight on! Be a Warrior Today, Donn Matharu M, Goadsby P (2001). "Cluster Headache". Practical Neurology A Bit About Donn: Donn is 38 years old and was diagnosed with relapsing remitting MS in 2010. He lives with his wife and son in Plymouth, MI. |
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