Since my last check in I have begun a new drug to treat my MS, Gilenya. After a few happy years on Tysabri my neurologist decided that my risk of PML was to great considering that I am JC positive. While I was ecstatic that I would no longer need to be infused for hours each month I was hesitant to leave the protection I believe Tysabri gave to me.
When I was in the middle of an exacerbation a few summers back it became obvious that Copaxone was not performing as expected and Avonex had already failed Tysabri aggressively stepped in and stopped the bleeding. 3 years later and I can’t complain, short of a Mono virus attack Tysabri was bullet proof. Don’t get me wrong when it came down to PML or a new drug the choice was pretty simple. But I do miss Tysabri?
How can you miss a treatment or have feelings for that matter? I will not miss getting jabbed or answering the questionnaire but I will miss meeting the people. Over the years I think I sat through about 40 treatments, some longer some shorter, but all were interesting in their own way. When I first started infusions I would check into the hospital and get admitted, my own room with a TV and bathroom, meals delivered and nurses that thought I was a local celebrity due to a paperwork error.
I met many people just starting their MS health care journey and I met people that had been on their journey for decades. We shared stories and knowledge, I taught and I learned.
You have a lot to live up to Gilenya.
Be a warrior today,
After months and months of planning and preparation MuckFest 2015 is in the books. Team Healthcarejourney.com did an amazing job both fundraising (the money goes to the National MS Society) and running through the crazy muck filled obstacle course. We had top 10 finishers in team fundraising, individual fundraising and running the obstacle course.
This year’s fundraising total was $6,200 up from $4,000 from the last event in 2013. Between our two main fundraising events we raised nearly $4,000. Our raffle put on by the Beer Connoisseurs of Southeast Michigan was a hit bringing in over $3,000. My appreciation and gratitude goes out to the Connies, a great group of people with big hearts and a passion for craft brews. Our second and culminating event was a concert at a local venue featuring Plymouth rockers the Velvet Fairground, the concert was well attended and brought in $500.
Two members of our group of Muckers brought in enough donations to crack the top 10 list for individual fundraising! Eric Rayner brought in $2,000, a big thank you to Eric and his fellow Quicken Detroit teammates! Along with Eric I was lucky enough to bring in nearly $1,500, thank you everyone that donated and participated in our events. On the obstacle course teammate Jason Vallimont came in 4th place overall during the competitive wave!
I am so proud of our team; we raised enough money to win every single incentive offered by the NMSS for fundraising. Tons of t-shirts, a team tent even free beers! Not to be lost in all of the fun that was had and mud that was slung is the most important fact of all, we helped fund vital MS research and helped provide services to many MSers in need. To date MuckFest has helped raise over $20,000,000.
Fundraising for MS is something near and dear to my heart, 5 years ago I was destroyed by the diagnosis. When people would ask why I was limping, I always said “car accident”, which was slightly true, but not the whole truth. To think that over the years I have been able to embrace my diagnosis and even fight back. No longer do I hide the fact that I have MS I will tell anyone. MS doesn’t scare me anymore, why should it? My friends, family and community are here to catch me when I fall and lift me up even higher when I get back up!
Be a warrior today,
Summer is finally here and it brought me a little girl! My second child was born at the end of May, I am very excited to be a father again but I forgot about all the work that goes into keeping a newborn happy and quiet! While trying to keep my little princess happy I can’t forget about my most fragile dependent…Multiple Sclerosis.
Having a newborn in the house has been great but my MS tries to butt in whenever possible. The simplest things are complicated by being twitchy or by being unable to use my fine motor. Picking up a sleeping baby is something that needs to be done with precision and finesse to avoid waking the slumbering mini. Unfortunately this Dad has the finesse of Charles Barkley on a golf course. My left hand is pretty weak and fine motor is non-existent so getting those tiny little snaps to fasten together is incredibly frustrating, lucky for me my wife is much more patient than I am. Lucky for her diapers are still totally doable for me.
”It is hard to remain sleeping when the guy holding you twitches and is constantly bouncing”, said my three week old daughter. Over the past few months my arms and legs seem to have a mind of their own. It started with my right shoulder jerking around a few months ago; I figured it was a side effect of the stress of work and preparations for the baby. I’ve had twitches in the past during stressful events, but they went away over time. It seems like these twitches have moved in permanently. The shoulder twitch has evolved into a full right arm flail when I get tired or stressed out, same as my legs. This has been worrisome as almost all of my MS symptoms have stayed on the left side of my body, I will be seeing my neuro next week to discuss all of this.
Finally my old friend balance or lack of balance has sprung up again. While trying to walk around carrying an eight pound bundle of joy it is important to not trip and fall, so far so good. When I do carry the baby I am overly cautious and try not to go very far with her. When my son was an infant I did fall but I was able to lay him on the couch as I went down, kind of a baby finger roll. That was one of the scariest things to ever happen to me, but it could’ve been much worse.
Over the next few weeks of Summer I hope to get a hold of these symptoms and try to relax a little now that the baby is finally here. With any luck the baby will rest and grow and MS will rest and stay quiet.
Be a warrior today,
Today was day one for me timing my walks to the park and back. I used a GPS jogging app to help me keep track of the data. The GPS was pretty spot on as you can see my zigs and zags along the way! My first timed walk went pretty smoothly, there were no trips or real balance scares which was nice.
So here are the cold hard numbers, I went .31 miles in a blistering 8:06 putting me on pace to finish a mile in 26:01. This left me a little winded but not too badly, it was much easier not chasing a speedy 2 year old the whole way! It is my goal to walk this route at least 4 times a week with the end goal of jogging instead of walking. But for now I will set my first walking goal to shave off a few seconds and come in under 8 minutes. Shouldn’t be too tough right?
Be a warrior today,
Back to school means a ton of walking around for me, as a resource teacher I service kids all over my school. All summer I tried to walk as much as possible and I was a little worried that once I got back to work my activity level would dwindle…not the case. Not only am I constantly trucking around the school, which is carpeted I’m also in and out of rooms full of miniature furniture and miniature people, both severe tripping hazards!
My very thoughtful special ed team included a pedometer in my birthday gift because they know that I’m trying to keep it moving while at school. Over the first few days of school I’ve averaged about 1,400 steps which is just about ¾ of a mile according to a few different sites I have looked at. Pretty good considering it’s mostly all done while avoiding those pesky little chairs and trying not to snag the carpet and go flying through the fourth grade!
Little kids are very honest and like to ask me questions about why I “walk funny” or “what is that thing around your neck flashing?" (it is my electronic stimulus aid) or "are you a robot?” So I try to teach them a little bit about what’s going on with my MS. So far so good some kids get a horrified look on their face because they think it’s catchy or that my brain might fall out of my head but some of the kids have relatives with MS or other issues with their health.
Back to school also means I’m coming up on the anniversary of the virus that really kicked off this whole journey. While it was terrible that virus really changed my life for the better, since then I have improved my diet and my overall outlook on life with MS. I will continue down this path and continue my fight with the MonSter until I win.
Be a warrior today,
Summer break has been very active around here; we’ve taken trips to the beach and had endless BBQ’s. I will be sad to see summer go but as I look back I’m happy with the progress made in my ongoing journey towards a life less dominated by MS.
Getting back to Yoga Moves MS was great, I love the positivity and energy that Mindy and her team bring to each class. Being able to experience the power of the mind and body at work is a wonderful thing. MS plays a varying role in each class members life but while they are in class they are focused yogi’s and push their bodies and center their minds.
Over the summer I was able to spend a lot of time with my soon to be two year old son, which was so great. Together we played in the park, hit some whiffle balls and found as many pieces of heavy machinery and tractors as possible. Finding heavy machinery is not difficult as we live in Michigan the road work capital of the galaxy! In order to get to the parks in our neighborhood it is about a three block walk in either direction which my toddler can do no problem, me on the other hand…I get winded, but I can walk straight through to either park.
Just being able to walk to the end of my driveway was a goal of mine less than a year ago, now I’m able to walk all over the place but I need to build up my stamina both physically and cardio-wise. So I’m going to start timing my walks to the park with an end goal of eventually jogging there. I was never a big runner unless you count basketball, but now that I’m unable to run it’s been eating me up. It’s been nearly seven years since I last ran but I figure with some hard work and dedication I should be able to run right? I tried to run the other day and let’s just say it’s going to take a ton of practice I feel like a baby deer trying to get my legs underneath me! I will keep you updated and I will try to record some of it for your viewing pleasures.
Be a Warrior Today,
Now that I am in summer mode finally I have gotten back on a more solid exercising schedule. A lot of my program involves keeping up with the very active miniature man that lives with us! He helps keep me moving with a daily stroll around the block and frequent trips to the parks in our neighborhood. In addition to the toddler training regimen I’m looking forward to getting back to Yoga with my friends at Yoga Moves MS in Novi next week.
Something I have struggled with for the past few years is stiffness and spasticity in my legs, it seems no matter how much I stretch or what I do I can’t get around it, until now! Over the winter Mindy my yoga instructor told me about Benjamin at Summit Muscular Therapy in Troy. She said that he had some sort of machine that could successfully stretch out your muscles and help to reduce stiffness, spasticity and muscle pain. Finally last week I was able to go check out the set up and get stretched out. The machine that is used is called a Therbo. After about an hour working on my hip flexors and my calf I was all done. Standing up and walking was strange it felt as if my legs weren’t connected below my hips. Two treatments later and I have pretty much lost my leg hike and in the morning my heel touches the ground before stretching.
How many of you saw the POV movie “When I Walk” on PBS this week? Wondering what your reaction was after watching the struggles of a man with PPMS and his daily life? I found it uplifting that he had such a strong support team around him and used his resources to work positively to help others that struggle getting around in chairs or scooters with axsmap.com.
Keep up the fight and be a warrior today,
So there has been a lot of interest about how I was able to get my Bioness
covered by insurance. I thought you might be interested in seeing the
videos that my case worker used.
In the first video (where I have the cane) I'm not wearing braces or anything just walking under my own power.
In the video with the Bioness (the one where I am wearing the orange shirt), that was the first day I used it! I think there was only a few days between the videos.
These are the only videos my case worker used with the insurance company. I also wrote a letter (yes it was a sappy letter) to the head of the insurance company. Does anyone have advice for getting an electronic stimulus device approved that they could share?
In order to get my electronic foot drop system I was going to have to come up with $6,500, considering that I am a rich and famous teacher (I wish) that should be no sweat. Dianne the rep I was working with from Bioness told me that there was a chance insurance may cover the device if I could prove medical necessity. So I set out to see what I could do.
Rewind a few months back to the beginning of summer 2013, for some reason my insurance stopped covering my Tysabri infusions. I called the 1-800 number on the back of my insurance card to try to get to the bottom of things, after an hour of explaining things to employee after employee I was no closer to getting an answer to my problem. Frustrated and Tysabriless I did what anyone would do, I complained to a co-worker. Luckily it was the right co-worker, she informed me of an option that was available in my insurance to get a case worker to help me manage my health care.
After getting set up with my case worker Therese I explained the issue about my infusions getting cut off and she went to work. Turns out somewhere along the line someone had entered a code wrong causing my meds to become unavailable to me. There was no way I could have fixed this problem on my own; it took an hour on a conference call between 6 people to right the ship! Anyway Therese to the rescue and I was back in business.
Back to the electronic foot drop device, after demo-ing it for a short time there was no way I was going without it, it looked like I was going to be in the fundraising business. After talking with Therese my case worker she told me that I should be taking video of my PT appointments for documenting purposes. So along with Mary my PT we started to record my walking each trip I took to the office.
Therese told me to get a letter of necessity from any and all Dr.’s that I dealt with and she would present my case to the board of decision makers. I collected letters from every doctor on my team, I felt like a pest but finally I had all of the needed documentation. All that was left was for Therese to present my case to the board, this was a very nerve racking time for me, all I could do was sit around and wait for the news.
Finally I received a call from a director at the insurance company and they had agreed to cover me! “It was the videos that really did it”. I couldn’t believe it, I was covered, I never thought it would work out. “We’ll cover $80” is what I expected but it all worked out and they covered the whole amount! I owe Therese for all of the hard work she put in to get this through.
If I could do it maybe you can do it too, ask questions find out what is available through your insurance. If not through your insurance throw a fundraiser, people would rather donate to help out a friend anyway. Be your own advocate and never stop fighting.
Be a Warrior Today,
If you would like to become a blogger, please contact us and let us know!
CLICK ON THE RSS FEED ICON BELOW TO GET A LIST OF ALL OUR PATIENT BLOGS