MS Strength

When I first developed multiple sclerosis, it was so vague and weird that I couldn’t quite describe the sensations to others, particularly to my family and friends. How do you explain fleeting neurological symptoms that sound like you’re having a stroke? Explaining to my then-primary doctor what was going on seemed even more challenging: he wanted to know WHAT kind of numbness I had. Did it feel like pins-and-needles or did the area lack ALL feeling? When did it come and when did it go? Was it restricting any of my activities and did it ever become painful? At this point I began a medical journal where I logged symptoms, durations, my feelings about these symptoms, dates, things that worsened these symptoms and so on. This journal has become my guide to my history with multiple sclerosis and a basic reference that I bring along with me to my doctors’ visits.

Keeping an MS medical journal is easy. Here’s what I find helpful:

Narrow a Medical Journal Down to One Topic

If you have more than one ailment— many of us do— then separate the problems into different journals within a notebook. Keep MS information in one area and (for example) low blood sugar, or hypoglycemia, in another section. Sometimes it’s difficult to tell where symptoms are coming from (particularly in the case of multiple autoimmune diseases) but if the illnesses are unrelated try to keep them unrelated in the journal to focus on what is precisely going on with each illness.

Be as Specific as Possible

I look back at my medical journal and my memory is jogged: I had this episode of vertigo at this point in time, I took this medication, my neurologist said such-and-such, the vertigo tapered off at such-and-such time. I would never remember this on my own and I’m glad that I took such descriptive details. Referencing entries with specific dates, durations, performed tests, my feelings about the symptoms, what medications I took, whether said medications helped or did nothing, and my doctors’ opinions has helped me to keep a mental idea of my MS journey thus far. It’s still of course mysterious, but I feel a little more in control of what’s going on.

Regularly Update Your Status, Including the Good Times

Being well is a point of reference within the journal. It’s important to document this as part of the journey. Just checking in every few months keeps the journal updated and current.

Record Feelings about the Attacks and the Symptoms

I was able to see a pattern of anxiety and depression which I shared with my therapist because of my noted feelings within my medical journal. The psychological elements are definitely a part of the greater whole.

Remember to Bring the Medical Journal Along with You to Doctors’ Visits

This journal aids not only you but your treatment team in better knowing your disease history and present status. You can also immediately record what your doctors say, requesting proper spellings and exact information. Sometimes it all sounds like mumbo jumbo if you wait until you get home.

Stick to the Basics

I don’t know about you but I prefer to keep this sort of journal in a standard wide-ruled notebook. I don’t get fancy and I keep to the basics of my case. This isn’t my autobiography; it’s a book of facts I need to keep. A basic notebook works for me.

I used to love to ski. I went a few times with my high school friend and her family, and also during our senior trip to New York State. Something about the fluid movements and the challenge of staying upright really thrilled me. Plus I enjoyed the snow. I remember feeling so proud when I advanced to the intermediate slopes (although I’d watch young whippersnappers — some looked like they were only four years old! —race past me with NO poles. Crazy.) I was happy and felt accomplished on the intermediate slopes considering I didn’t take up the sport until I was 15 years old. My high school buddy, on the other hand, was a pro on the advanced slopes because she had been downhill skiing since SHE was about four years old.

Now I look at cross-country skiing as maybe a new option. I’ve been off the downhill slopes for too long and my balance is sub-par, but I think the flat trails could offer some needed exercise and a way to improve my balance/stamina. When I recently read about an MS skiing fundraiser at my local NMSS website, I was intrigued. Here’s what’s happening in Wisconsin this week:

From February 19 – 21, the 36th annual American Birkebeiner cross-country races will be in full swing. Birkie Skiers for Cures, in collaboration with the National Multiple Sclerosis Society, have created a fundraiser similar to the NMSS’s biking and walking events, with participants raising pledges. There are four races including the 50K American Birkebeiner, the 54K Birkie Classic, the 23K Kortelopet, and the Johnson Bank Prince Haakon 8K. Participants raising a minimum of $2,500 will receive an invitation to meet and ski with Norwegian ski Olympian Bjorn Daehlie. Those raising $250 or more will be entered into a drawing to meet the skier. Of note: Daehlie’s mother suffers from multiple sclerosis and has been the source for his quest to find the cure.

****To learn more about this event, visit the American Berkebeiner website.