Blog Archives

Robo Leg versus MS

11/30/2013

Foot drop has been a nuisance of mine for over four years, it was also my first obvious symptom of MS. Throughout my life prior to MS I was an athlete and would play pretty much anything, being six foot six was always a bonus too. These days being tall is kind of a pain, my cane is massive and scooting up to the table at a meal is dangerous situation for all parties involved.

As my MS has progressed my entire left leg has become numb and pretty much useless. So walking can be an adventure especially when my knee feels like hyperextending at an inopportune time. With foot drop and knee uselessness I have developed a “vault” to my walk to clear my foot. None of this helps my balance at all and I often feel like I’m riding an out of control carousel, up and down and up and down.

Over the years I have assembled “my robot leg” as my nephew calls it to battle the deficiencies in my leg. It consists of a ToeOFF Fantasy and a Don Joy Full Force ACL Knee brace and a whole bunch of Velcro! I worked together with my brace doc at the U of M orthotics and prosthetics facility in Ann Arbor and we came up with robo leg. I know it’s not the best solution but it works for me. Do you have any innovations that you have come up with to help fight off symptoms of MS? Keep up the fight!

Be a Warrior Today,
Donn

The Impact of Food and Multiple Sclerosis

11/27/2013

“Let food be thy medicine and medicine by thy food “could not be truer for me. After Avonex, Copaxone, and Tysabri made me feel sick, fatigued and brought about a whole host of new and unusual symptoms, I decided to give them the boot. As I began to detox, I felt better but not great. My body craved a substitute, some form of healing for the wreckage that was going on internally.

While on prescription meds I had been skeptical of the natural healing books I read. I was curious enough to read them but I was still bought into the idea that Multiple Sclerosis was so scary there was no way a bunch of herbs was the answer. Once off the meds, I thought “what do I have to lose?” And so my journey of healing with nutrition began.

The MS Recovery Diet (by Ann D. Sawyer and Judith E. Bachrach) resonated most deeply with me. And I liked that it was a book written by two women with MS who have stopped their symptoms and have actually begun to heal because of the diet. No gluten, no dairy, no eggs, no legumes, no yeast, no sugar. I was apprehensive. If this works does it mean that I will HAVE to follow this diet? I was eating A LOT of sugar before my diagnosis. A regular cookie monster I was.

I INSTANTLY FELT BETTER. I still have nagging pain but for the most part, I forget I have MS. I am quickly reminded with the slightest bit of sugar or a spoonful of beans, so I just avoid them. My fear surrounding having to follow a strict diet has been replaced with what we’ll call “experiential education.” Having strayed from it enough times to verify that yes, indeed these foods are making me sick, the motivation comes from wanting to feel good, not a compulsion to deprive myself.

Having switched to vegetarianism with my diagnosis three years ago, believing that to be the healthiest move at the time, I have had to incorporate animal protein back into my diet. Again, I instantly felt better.

My journey is far from over and the results far from conclusive. I am now working with a holistic doctor at the Marino Center for Integrative Health in Cambridge, MA. I went on a diet to cut out all common allergens and inflammatory foods. 40 days and no pain improvement. No real noticeable affects at all. Next was a diet to test if I am fructose malabsorbent. Seriously, just cutting out celery made a huge difference for me. I love this diet but it does not contain all the answers. As I test food item by food item now, I am starting to see that my body reacts to everything. In that autoimmune “all is an enemy” kind of way. Nuts and potatoes cause a mild reaction, apples and millet wreak havoc.

In a month or so I see results of a Candida test, another theory behind MS sufferers. If it is found to be positive, I will reread Healing Multiple Sclerosis (Ann Boroch.) A book that sounded too good to be true my first time around but makes sense just as much as any other cure floating around out there.

I’m curious to hear- what have your journeys with food been? What have you discovered about the relationship between food and your health?

Peace and blessings to you on your journey,

-Emily

Clarity

11/23/2013

I've been diagnosed with MS for over 20 years. What started off as relapsing remitting eventually turned into secondary progressive MS. In the beginning my diagnosis was uncertain and I had to live with that for several years. The way that I found out that I was diagnosed with MS was painfully.

Far from home, I had some concerning symptoms and paged my then neurologist in the States. While I was in London celebrating my graduate school acceptance with my best friend, the doctor told me over the phone that he thought that my symptoms had progressed into multiple sclerosis and that I should follow-up with him when I returned back to the US. I was 4000 miles away from home with no family in sight. I was on top of the world and suddenly the world I knew had changed forever. I was young and I didn't know anyone who had MS. I didn't know who to turn to or how to navigate this complicated and hugely unpredictable disease. Family and friends talked quietly around me in hushed tones grieving as though it was somehow about them. I found myself for years dancing around other people's emotions trying to make them feel comfortable with my diagnosis.

Here's the good news: after many trials and tribulations I am here to tell my story and am in more control over my condition than I've ever been. While I will talk about this in future blogs, the long and short of it is that I quickly developed an inner circle of people who could be truly supportive and focused the next 20 years on finding the very best professionals in the field to help me better understand how to navigate MS and live life to the fullest. From employment choices, pain management, MS medications to obtaining top-notch rehabilitative care and some very useful equipment, I can honestly say that I have turned over a number of stones that have kept me active and considerably healthy.

A year ago I was in a hospital bed for over a week with pneumonia unable to move one muscle and today I am in an adaptive rowing program rigorously exercising three days a week. The cornerstone to my healthcare has undoubtedly been the relentless care of my neurologist who tried numerous therapies with me until we found the magic combination. Over the past 10 years he brought me from feeling hopeless as I began living life out of a wheelchair to feeling empowered by gently reminding me that I have the power to create change and eventually it sank in.

The takeaway is that there are only so many hours in the day and with a limited amount of energy, we have to make choices about what is most important. Don't let it take you 20 years to develop your winning team.

Happy Thanksgiving,
Lizzie

Tired of Fatigue with Multiple Sclerosis?

11/22/2013

Over the past few months there have been quite a few healthy changes to my lifestyle. What I’m finding is that I am less exhausted all of the time, yet I still need to sit down and take a break if I’m walking or attempting something strenuous, but overall my energy level seems to be responding well to the changes that have been made. MS still saps me of my strength throughout the day and some days are better than others but here is what I have been doing lately.

Drinking as much water as possible has helped in more ways than one. Every time I go near the kitchen I drink a full glass of water, thirsty or not. Typically I’m a coffee or juice kind of guy but since I’ve started taking in so much water I haven’t been searching for the needed energy boost. Drinking water will help your bowels function better. I know nobody likes to talk about it but I have spoken with plenty of people (with MS or not) that are not handling their business regularly, and water will help. If you don’t like boring old water try adding lemon, ginger or mint to hot water. Now that its nearly winter you know you’ve been looking forward to snuggling up with a warm mug of…water!

Eating breakfast has given me a boost as well. If I eat a few eggs with bacon and fruit I’m not starving in 15 minutes and I’m able to be more productive before lunch. I’m working on going Paleo with my diet but I’m not quite there yet, more on that in the future. Snacking on nuts and dried fruit has also helped keep me away from all of the processed junk food that we all know and love.

Finally exercising has been the biggest lift for me, going to PT twice a week and yoga once has really helped with my fatigue. When I say exercise I’m not talking about marathons and bench presses but 20 minutes on the Nustep and PT or MS yoga for 2 hours. Find your spot and go for it. I’m working on down the street to the corner and back in 10 minutes today, what’s your plan? Keep fighting!

Be a Warrior Today,
Donn

Positively Inspired -- Living with Multiple Sclerosis

11/18/2013

Over the weekend I attended the Yoga Moves MS fundraiser in Troy Michigan. It was attended by doctors, patients, therapists, family and friends and all connected by their common battle with MS. As I caned my way around the event I saw everyone with a smile on their face. Whether they were pushing someone in a wheelchair or riding in the chair, everyone had a grin and a sparkle in their eye.

The keynote speaker Erica Coulston was very inspiring, after suffering a severe spinal cord injury she was told by her doctors and therapists that she didn’t have much of a chance for improvement. Rather than take the bad news and stay down, she founded Walk the Line to Spinal Cord Injury Recovery and got to work. Hearing the positivity come from someone that has suffered such a catastrophic set back was very inspiring and made me think of the people in the room around me.

Rather than staying down or being depressed about the hand they were dealt, all of these MSers have made the choice to fight back and do what they can. It was impressive to see the amount of love and support that filled the ballroom, you are not in this fight alone but you need to be willing to ask for help and advocate for yourself. Some of the best advice I heard all night came from a young lady with progressive MS, “if you’re not positive, you’re negative.” Surround yourself with positivity and fight on!

Be a Warrior Today,
Donn

Any Tips for Foot Drop?

11/14/2013

For the past few visits to physical therapy I have been using an electronic foot drop system to…well help with foot drop. It’s been pretty interesting so far being hooked up to electrodes and getting shocked by my therapists as I walk around the office. Setting the system up had to be very exciting for Mary my therapist as she would shock me and then say “too much, or should I go stronger?”

After I was done with electro shock therapy and the smoke had cleared I wondered what other MSers are doing for foot drop, any tips? What has worked to help you step over annoying rugs?

Be a Warrior Today,
Donn

Keeping it Positive with MS

11/8/2013

2 Comments

Lately my health care journey has been rather trying. I was bedridden for a few weeks and lost all of the physical progress I had worked so hard for over the summer. When summer ended I was able to walk cane free for up to 20 minutes with no problem, these days I am lucky to make it more than 5 minutes without having to stop and sit down to catch my breath and huff and puff for a minute.

Rather than getting down on myself I’m choosing to be proactive, remain positive and go for it. Instead of focusing on what I can’t do, I’m locked onto what I can do. I can’t walk around the block but I can go for 10 minutes on the Nu-Step at therapy. I can't keep my energy up, but can change my diet and see if I can’t take control of it. I am unable to tune into my body and keep my mind calm, but I am able to go to yoga and work at improving the connection.

You have MS do whatever it takes to make sure it (MS) knows that you are in charge! Choose to be proactive, look around on the site and find a resource that will benefit you. Join a support group or find an event you can attend and team up in your fight.

Believing you can do something and getting out there and doing it are the two best things you can do today.

Be a Warrior Today,
Donn

2 Comments

Here We Go...Again

11/4/2013

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It’s starting again. I feel the beginnings of sunburn on my left thigh. But I know that’s impossible. My legs haven’t seen the sun in months, so how can I have a sunburn? Simple: I don’t. See, one of the more recent quirks of my MS symptoms is that I will occasionally get a sensation like sunburn on my thighs, usually just the left one, but sometimes it likes to surprise me and attack the right one to keep me on my game J. This really isn’t a big deal in the scheme of things, but it is annoying. My thigh becomes overly sensitive so that the leg of my pants takes on the characteristics of sandpaper each time it brushes my thigh. Again, this is a minor thing, but I have to wonder why at least one of the myriad of symptoms from MS can’t be pleasurable!

-- Ms. MS

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Does It Make Me a Horrible Person?

11/3/2013

I used to love going to Facebook and checking in with old friends. Lately though, it is becoming harder and harder for me to go to the site without a barrage of emotions running through me. Like a lot of little girls growing up, I used to play “House” with my best friend and while the story lines would vary, one thing always remained the same: We always played the role of mommy to our baby dolls. While I outgrew playing with dolls, I never lost the desire to be a mother. And until I turned 31 and was diagnosed with MS, I was able to hold on to that dream.

Does having Multiple Sclerosis prevent you from having children? No, so if you are newly diagnosed and just reading this, stop panicking! Like everything with MS, it is something that is individualized for each patient. In my case, however, I was advised not to have children. I have an aggressive form of MS that will rear its ugly head as soon as I am off my medication for even a month. After 3 months, I have over 20 new active lesions. I have no clue what 9 months off of medication would do to me, and staying on my treatment while pregnant is not an option. Sure there is adoption and surrogacy, which are both wonderful options, but at this point, I have realized my own limitations and without going into any further detail, these were just not avenues I could explore.

So that brings me back to Facebook. Halloween photos were abound yesterday and I couldn’t help but feel my heart drop as I looked at the smiling faces of babies dressed as pumpkins, or little girls dressed as princesses. That was supposed to be me! I was supposed to be getting my children costumes for Halloween, taking them trick –or-treating, and then watching their excitement as they emptied their booty onto the kitchen table at the end of the night. Ok, I’ll admit it: I’m jealous of my friends. Is that horrible? I mean, I’m happy for them. Honestly. But there is also this ugly little part of me that is jealous, that feels like I got cheated, like I had my dream stolen from me. My friends are wonderful people and they deserve their happiness, so I have started to adopt a new mantra when seeing these pictures: “I’m happy for my friends, but sad for me.” I’m just really trying to keep everything in perspective….

Be Your Own Best Ally

11/1/2013

2 Comments

One thing I have learned while being on this crazy journey has been to be my own advocate, nobody else is going to do it for me! In the beginning with my diagnosis everything was so huge and seemed like a life or death decision with each appointment. Hanging on every word from each new doctor was stressful, so I took my first step and reached out to a friend with MS.

We talked on the phone for hours and by the time the conversation was over I was feeling a little more at ease with my new diagnosis and had some options! After talking to my friend the first thing I did was contact a neurologist with an MS specialty, this helped immensely. Being in the right place will help you in the long run. So now I was hooked up with an MS Neurologist and the practice even had an MRI machine and a lab all in one place! Together with my new Neuro we made the choice for what drug I would be starting out on, turns out it wasn’t right for me but it was a start. When I thought the drug wasn’t working I had to bring it up to my Doctor, have a voice and discuss treatments with them. If I had never spoken up would I still be on that med, hating everything, with the flu six days a week? If you don’t like what’s going on with your body change it.

Researching is something I love to do, now instead of baseball history I’m looking into the newest MS treatments, trials and events in the area. http://www.healthcarejourney.com/news--events.html Follow this link to get you started through it you will be able to sign up with the National MS Society and become a member of the MS community. You will be able to look into trials in your area or find support groups that may help you iron out some of your issues, or that may point you to the Doctor or facility that you have been looking for.

All of this brilliant information can help you understand what is going on with MS but it is up to you to speak up and take hold of it. You have MS, it doesn’t have you!

Thank You,
Donn

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