Sooner or later it will happen – you’re going to have a bad day and you’re going to feel completely screwed. It’s happened to me a few times over the years and it usually involves a car. My husband and I share one car and this usually works out well for us. Then there are the peak vacation times when I discover at the grocery store that the new car battery is defective and have to call a tow truck (and front the cash) call a taxi (with cash on hand) find the one car left in town that has not been rented out and take a $48 ride to pick it up. In 97 degree heat. It was this particular occasion as the stress and heat ganged up on my MS that I realized I needed to prepare better. We must be prepared for Multiple Sclerosis emergencies.
Has our faith in Western medicine completely faded? Although one would hope that treatments for Multiple Sclerosis are ever-improving, lately I have heard time and again that individuals with the disease have abandoned Western medicine altogether in favor of diet, exercise, and marijuana. One recent supplement fad for MS is Evening Primrose oil. I have personally chosen Gilenya for the time being, but I see no point in excluding natural and healthy treatments that apparently work so well for others. Cannabis use with MS has already been covered recently. While I intend to cover the evolving family of alternative therapies in future posts, right now we will focus how to treat Multiple Sclerosis with diet.
This week I am re-learning to ride my shiny new birthday bicycle 20+ years since I last had a bike and 3+ years after a diagnosis of Multiple Sclerosis. You could say that I’ve grown a bit since I was 12. You could say I might’ve put on a lot of pounds. You could also say that according to the expertise of Wii Fit, the left side of my body compensates for the weakness on the right side of my body to the tune of 75%. You could say I have little to no balance.
My husband has been seriously biking for a few months and fell in love with it. Our city has a fantastic trail that follows an old train trail and connects to other towns. It’s well designed and mostly shaded. While the summer heat is likely to provide a wealth of challenges to me, I hope to learn to ride well enough to actually enjoy it when autumn arrives.
Every summer I am amazed at the heat. Ridiculous – right? I have a virtual 2 degree window of comfort (I’m so annoying). Cold temperatures are made bearable with cardigans and blankets. Warm weather, on the other hand, seems to melt my brain. Heat and Multiple Sclerosis work together like two villains in a comic book.
Individuals with Multiple Sclerosis are notorious for heat intolerance resulting in an endless variety of possible repercussions – this is known as Uhthoff’s phenomenon (or Syndrome). Summers may be beautiful, but they are also difficult for us.
Work can be stressful and tough without a disease like MS. What’s a person to do when confronting a challenging career and a challenging disease? Plenty of people (and celebrities) have flourished in their careers in spite of MS. What can you do to be one of those people? What are your options if you simply can’t work anymore? What do you need to know about Multiple Sclerosis and disability?
Last week I began a new position at the company where I’ve worked for over a decade. The coming months are certain to be incredibly stressful. The primary challenges I face on a daily basis in a technical office career are cognitive issues, speech issues, walking (even though it’s primarily short distances), and fatigue. I abstain from many medications because they cause too much lethargy for me to power through a work day while taking them. While these are not all of the challenges I face with Multiple Sclerosis, they are the symptoms that affect me most in my job.
Many times when I meet someone, they are surprised that I do still work. I often think about how I could spend the time I’m stressed and tired at work instead resting, doing yoga, swimming, anything to help myself physically and mentally. Then again, who doesn’t dream about being somewhere else when they’re busy on the job? Certainly doctors and hospitals seem to expect everyone to have open schedules ready to spend hours and days in their offices.
World MS Day is just around the corner on May 30th 2012. What have you done to raise awareness for Multiple Sclerosis this year? I’m ashamed – I know people who have participated in Walk MS for years, but I have not. In fact, I never knew how to get involved until this year. And I’m guessing I’m not alone. We have fantastic Multiple Sclerosis support organizations within our reach – do you know who they are or what they do?
In honor of World MS Day, I present to you the following organizations that provide support to those of us with Multiple Sclerosis and each organizations opportunities to take part in the MS community, including fundraising and raising awareness to fight MS. Each of these organizations provides a wealth of information on their websites and also takes part in advocacy for the MS community.
Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.
MRI: Magnetic Resonance Imaging AKA the procedure wherein many non-claustrophobic people find out what claustrophobia kinda feels like. MRI is an important tool in diagnosing Multiple Sclerosis and in monitoring disease progression. Last week I underwent the least stressful MRI that I have ever experienced (thanks Ativan!). What is MRI for Multiple Sclerosis?
Depending on your disease activity and medication you are probably being scanned anywhere from every 6 months to every 2 years. How does the MRI work and what does it teach us? Today we are discussing traditional MRI for Multiple Sclerosis.