Guest Blogging Duo: Mom and Dad

Posted on March 17, 2014

My Parents Blog and So Can Yours.

by Liz Jackson’s Mom and Dad

We’re the proud parents of The Girl with the Purple Cane. We’re new to this blogging concept and think it’s great that we can use her forum to share some thoughts.

The Girl with the Purple Cane parents

Liz has always been high energy, active and healthy; that’s why it was such a shock to get a phone call that she couldn’t walk. I (Mom) flew to NY the day after that call and sat by her bedside along with her wonderful partner while the doctors tried to figure out what was going on with her. She was on the neurological ward and we quickly learned that the diagnosis process for neurology is to use a variety of unpleasant tests to rule out one horrific disease after another. It was a huge relief as some very scary diseases were eliminated as the cause… ALS, brain tumors, spinal tumors, etc. It wasn’t totally grim; we always laugh when we’re with Liz. There were some comic moments in the middle of the suspense that I still chuckle over… like the time they gave her muscle relaxers. She was so relaxed she became convinced that some random cat had eaten the meatballs in her hospital lunch (which didn’t have any meatballs in it). It was hilarious.

The other thing we learned about neurological diagnoses is that sometimes the doctors don’t ever figure out what caused the problem. That’s where this episode finally landed – they finally decided that she’d had an autoimmune reaction to something.

Early on, Liz showed a remarkable improvement. She was even able to hike up a mountain in Peru to Macchu Picchu before her symptoms returned over Thanksgiving.

The Girl with the Purple Cane Machu Picchu

That set off another round of Liz trying to figure out what was wrong, with multiple and frustrating tries at finding a medical team that could help her. That seems to happen a lot with victims of rare diseases, it takes an army of doctors to get to the bottom of the problem. Us? We got to do what parents do in this situation-worry-a lot.

So where did the purple cane come into the picture? At one point in this process our fashionista daughter decided to make a style statement and found a purple cane online – family and friends were thrilled to pitch in to pay for it. We’re just happy she can walk and if a snazzy cane helps her do that, great.

Fast forward many long and grueling months and Liz is doing well. She’s learned a lot more about neurological conditions than most people would ever want to know and she’s learning how to manage her own condition. We’re proud of her and are not surprised that her spirit and sense of humor would prevail here.

There are two silver linings in this situation; first, Liz learned just how many people care about her. And Second, her ability to use social media may help other people with rare diseases.

Rare Disease DayAnd us? We love her dearly and just want her rare disease to go away and never come back.

 

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What Others Are Saying

  1. Anne Turner March 18, 2014 at 7:03 pm

    A very touching story. Such wonderful positive attitudes from all concerned. I admire your strength. Ronny

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