Blog Archives

Traveling and Multiple Sclerosis

2/26/2014

As you can tell from my blogs, I'm a a pretty positive person and try to make lemonade when life throws you a bunch of lemons. As I sit here in extreme pain from what I can only describe as "Charlie Horses", it's very hard to think of the positive. I recently returned from what I thought would be a very relaxing vacation in Antigua. My agent who booked it called the resort to ask about walking and stairs and they assured her that there was minimal walking and just a few steps to pool and beach.

Upon arriving at resort, there were thirty six steps to get down to the pool and beach and the resort restaurants were three football fields away from my room. I asked for a wheelchair and three days later, it arrived broken and wobbly. As you can probably imagine, I was furious. I walked as much as I could and just kept telling myself it was great exercise. Each day, the spasms worsened and the muscle fatigue increased. With two new hips and now the spasms, my back began to have spasms also. The combination of stairs, walking, new hips and pain had irritated the spinal fusion. On the bright side, it was 80 degrees every day and beautiful sunshine. I can only say that I thank God for a great family and my dear friends. With their help, I managed to make it home safe and sound.

Why did I write this blog you may ask? A few reasons. First, although we have the ADA in our country, not all countries follow those rules. Always do research when traveling outside the country. Do not leave it up to an agent to ask the questions. Dig deep to get real answers. Second, have a support system in place to help you both physically and mentally. I normally walk well with a cane and never ever thought I would have the difficulties I had in Antigua. In the future, I will be much more prepared for what can possibly go wrong. Although this is not a positive story, I hope it can help others who travel. I will blog again when I have some answers about what is causing these symptoms and possible help for relief.

One last note, one of the "Tips of the Week" on this site was about traveling in wheel chairs or with limited mobility. Use that link http://wheelchairescapes.com/ as it is a great site.

--Susan RN

A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.

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“The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine” First Glimpse

2/23/2014

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While navigating through the first few chapters of “The Wahls Protocol” the common theme that Dr.Wahls is expressing is that your body is a complex machine and it requires complex nutrients to function properly, especially your cells and the mitochondria powering them.

“What your cells use to fuel the chemistry of life comes directly from what you feed yourself.”(Wahls) Unfortunately many of us never take this fact into consideration, as we are too busy choking down a breakfast burrito on the way out the door at 7:15 AM already late getting the kids off to school and stressing about a 9:00AM meeting that we are presenting at. If we don’t take time to keep our body properly fueled it will sooner or later start to backfire and eventually breakdown. Try filling up your snow blower with sausage gravy the next time you need to dig out from a snowstorm and see how far it goes?

“Food can directly influence the firestorm of destruction inside your body. Will you continue to fuel the fire, or will you douse it by infusing your body with the particular and extensive nutrients it needs to best fight its way from the debilitating effects of an autoimmune condition back toward steadily greater health and vitality?”(Wahls) These are very powerful words that not enough people have heard yet. Are you always fatigued, mind is foggy and you are taking too many prescription drugs...sound familiar MSers? Chances are you are starving your mitochondria and in turn not letting your body function at a high level. Cramming down low grade ready-made meals every day is not helping your body fight the disease that is ruining your life; it’s actually making it easier for the disease to be victorious.

Two days with “The Wahls Protocol” and I can’t put it down, I keep reading and re-reading dumbfounded by the facts. This should be mandatory reading for everyone, there is no reason to continue feeding your disease, feed your body what it craves and it will make your journey a comfortable one!

Be a Warrior Today,

Donn

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Getting Diagnosed with Multiple Sclerosis

2/22/2014

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My MS health care journey started in 2010 with a diagnosis of Relapsing Remitting MS. Receiving the diagnosis at age 34 was a shock and I felt overwhelmed and lost. “What now?” I asked the neurologist. “Well you will need to pick one of these drugs” he said as he handed me a huge stack of literature on Avonex, Rebiff, Copaxone and other therapies that were available at the time. “What’s the difference?” I quietly asked. “Really not much, just the number of injections you have to get.”

Luckily that was the last time I ever spoke to that particular neuro and things have gotten much better since on this winding, bumpy and wild ride that is being a MSer. After the initial darkness from the diagnosis lifted I contacted an old friend that I have, that suffers from Progressive MS and she helped me find my way by suggesting a neurological disorders clinic and advising me on the different therapies and how they had affected her health. I have since moved on to the MS Clinic at the University of Michigan but in my time of need it was very comforting to know that I had a friend that was there to help guide me during the first leg of my journey.

Healthcarejourney.com is aiming to assist you in your times of need relating to Multiple Sclerosis by consolidating many great resources all in one place. Take a few minutes to explore the site and see what you find that will help you. For example, read a blog by Dr. Revere Kinkel, who is a leading specialist in the field of MS, about what you should know and think about when diagnosed with MS... http://www.healthcarejourney.com/4/post/2013/07/the-diagnosis-of-ms.html Also visit our "treatment" page and look at all the different resources... http://www.healthcarejourney.com/treatment.html If you don’t see something you need let us know, if there is a topic you want covered send a message and we will see what we can do. Let’s have a conversation about our journeys, how did yours begin?

Be a Warrior,
Donn

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Will I Ever Be Able to Work Again? -- Multiple Sclerosis

2/18/2014

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After the mono episode in September my journey has taken a better course, I’ve changed my diet and my outlook has brightened. I was gone from work for about four months, September through January, the longest time in my life that I wasn’t working. Over that time I got my body back into shape and really started the assault on my MS. My goal was to get back to work and continue on with my life.

Being in the education business, more specifically the special education business I had to make sure that my energy level was going to sustain me throughout what is generally a strenuous day. I didn’t want to go back to work unless I could do a great job, there’s no such thing as an easy day and I had to be sure I could do it.

The last few weeks before I returned to work I really hit the exercise bike hard doing 30 minutes a day to regain some stamina and strength in my legs. Yoga was also a big key for me; now that I’m back to work I’m really missing my adaptive yoga courses. Yoga helped with my mind body balance and I try to implement controlled breathing throughout my day, “relax your shoulders and breath in deep.”

Now that I’m back to work I’ve been doing great, I pack a huge lunch with a few pieces of fruit and a massive salad each day. It hasn’t been easy by any means, and I’m tested nearly every day, being one of the only male teachers in my school I get a cupcake almost every day! I work on stretching whenever I get a chance and drinking water while I snack on some veggies.

It’s been a long hard struggle to get back to where I am but I’m feeling great about myself and I’m looking forward to continued recovery.

Be a Warrior Today,

Donn

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Italy or Holland?...A Story about MS

2/11/2014

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Someone posted some thoughts on my Facebook page that spurred me to write today's blog. Her perspective came from raising a disabled child. However, it applies to all of us dealing with MS, those who are caretakers, or those who have someone in their lives dealing with a disability. She described it like this. All your life you dreamed of going to Italy. You saved for years, you bought books, new clothes, you have made plans and dreamed about seeing the Vatican, Colosseum, and riding a gondola in Venice. It's all very exciting.

After months of planning, the day finally arrives. You board the plane and several hours go by. The stewardess finally makes an announcement. " Welcome to Holland". You are screaming " I didn't sign up for this. I've waited my whole life to go to Italy". She explains there's been a flight plan change. Holland is beautiful she says. It's here you must stay.

So, you must go and buy a new guide book, meet different people. They didn't take you to a horrible place, you are not dying. It's just different. It's a little slower and less glitzy than Italy . Once you catch your breath, don't let the bump in the road ruin everything. Open your eyes, breathe, and realize Holland has tulips, Holland has windmills, and Holland has Rembrandts.

So everyone you know is busy coming and going and talking about Italy and what a great time they had. You keep saying to yourself, " That is where I was suppose to go". Yes, being diagnosed with MS, or any type of chronic illness causes deep emotional feelings. Some feel anger, some feel sad, sometimes we get so depressed we need help. It has really interfered in your life's plans...just don't let bumps in the road take your dreams away. Activities, ideas, and dreams may need to be adjusted. If you spend your life mourning the fact you never got to Italy, you'll never see the beauty and special things Holland has to offer.

Depression can be very hard to talk to your family and healthcare providers. When we break a bone, we immediately get it set and ask for help. Depression can be treated. Our mind sometimes needs help too. Don't be afraid to ask for help. I have had many days of depression dealing with MS and or my other health issues. Reach out to someone. You need to enjoy the tulips. Life is very short . One day at a time.

Susan RN/Nurse

A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.

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Multiple Sclerosis and Vehicle Modification

2/9/2014

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My husband and I have been considering purchasing a modified vehicle so that I can start driving again. The physical therapists at Spaulding Rehabilitation work with a company called Ride Away:

http://www.ride-away.com/research/start-here/disability-specific-wheelchair-van-considerations/

In particular, I have been working with:

Eric Lajeunesse
Mobility Consultant
Ride-Away Corporation
(603)437-4444
elajeunesse@ride-away.com

I like this organization because they are a very low pressure sales team that have access to many used modified vehicles. If you buy a new vehicle, they will adapt it to your specific needs no matter what your disability. If you use the modified vehicle to get to work and live in Massachusetts, the Massachusetts rehabilitation commission may have a grant to help you pay for it.

While I have grown used to being a 'backseat driver,' I love the idea of being independent again. It is nice to get a ride but nothing beats having the wind in your hair on the open road!

Has anyone from other parts of the country had good experiences with organizations that can help modify vehicles? Let us know!

Limitless Lizzie

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Dreaming and MS

2/4/2014

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Lately I have been having very vivid dreams, until recently I can’t think of the last time I had dreamed? I haven’t changed any meds at all, I’m wondering if it might be another bonus from my diet change? I’m hoping this means that I am reaching REM sleep which could also help to explain my added energy?

In my recent dreams it hasn’t been anything too exciting like flying around or sitting on the beach but in all of my dreams I have either been running or participating in a physical activity like baseball or chasing around my son. In my dreams I don’t limp around at all, I have noticed that. Waking up refreshed has been great; I’m not tired as soon as I wake up which is nice!

Maybe it’s a sign that I will be running around sometime soon, I have been feeling so much better maybe my mind is recognizing that and is responding ? Dreaming has been a nice break from the snow nightmare that has been a reality for so many of us, no snow in my dreams either.

Anybody else dream or not dream and do you think it has anything to do with your meds or diet? Fight on!

Be a Warrior Today,
Donn

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Getting Insurance Coverage for MS Treatments

2/2/2014

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I did not know when I headed down the holistic path there would be so many tests. But it seems every new diet I try or symptom I bring up; there is a test for that. These tests don’t carry the $3000 sticker price that more conventional MS therapies do, but a $100 out of pocket here and there adds up, especially when you are not working. So what is a person with MS to do?

Advocate for yourself! Something so simple that I had not thought of in all of my previous interactions with insurance. I was so used to just answering the questions they had, providing the bare minimum. This time when I was checking to see if the Intestinal Permeability and NutraEval tests were covered, I asked, “Does coverage depend on what the tests are for? I have multiple sclerosis and the conventional therapies have not worked for me and were making my symptoms worse. So now I am working with doctors to try and figure out if there is something else going on.” It took them three weeks to deliberate, and two follow-up phone calls from me, but the same woman I spoke to originally called me back. She said many people had input on it, with emails floating back and forth between insurance and nurses, but that the tests would be covered in full. In full! This has never happened to me.

My inspiration to advocate in a polite but persistent way came from the book “How To Be Sick: A Buddhist-Inspired Guide for The Chronically Ill and Their Caregivers” by Toni Bernhard. Amazing book. This is only one tidbit of insight I have gotten from it so far. If you have allowed your illness to limit the treatment you have sought, feel inspired to get the health access you deserve.

--Emily Royce

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