Living With HIBM - What it's like to live with a progressive neuromuscular disease

I’ll Go On

March 1, 2014November 19, 2017

Today is international Rare Disease Day. And on this rare, very rainy Friday in Los Angeles, what was most on my mind all day was the fact that before HIBM, I don’t think I ever once thought to consider the impact the weather can have on the lives of people with disabilities. I don’t judge myself for it. It’s just one of those things that would likely never enter into one’s mind unless or until one is confronted by it first-hand. I am lucky to live in Los Angeles, where the elements almost never work against me. And so it is probably because of the infrequency of such weather that it hits me as hard as it does and did today.

Guitars and Tombstones

November 23, 2013November 19, 2017

Last Friday afternoon I was surprised to discover that my old acoustic guitar was in our living room. When I asked my son-who was playfully strumming the strings at the time- how it arrived there, he told me that my mom had dropped it off. She had apparently found it while cleaning out her basement.

I took a moment to figure out how I felt about it. I wasn’t sure. I actually didn’t want to feel any feelings about it. So I simply didn’t let myself. I quickly moved out of any potentially emotional space and focused on how cute my son looked playing my guitar.

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My speech from this year’s NDF Gala

November 14, 2013November 19, 2017

Below is the link to the speech I gave as an honoree at this year’s NDF Gala at the Beverly Hills Hotel on October 17th, 2013. It was an incredibly successful event, selling out to over 600 guests and raising almost half a million dollars. Thank you to everyone who helped make it possible.

http://vimeo.com/79357093

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The Jennifer Room

September 29, 2013November 19, 2017

About a month ago, I received an invitation to attend a “Patient Day” reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM. Dr. Kakkis was throwing a party to celebrate the patients of the various genetic diseases he has helped treat over the years and to honor his incredible staff. He was also going to be dedicating conference rooms named in honor of patients. I was told there was one named after me. I hesitated at first as I am always a bit protective of my emotional reaction when spotlighted in the patient role, but I decided to go for it.

Tired

August 27, 2013November 19, 2017

I’m tired.

I’m over it.
I feel like it’s enough already.
I’ve risen to the challenge, I’ve tapped into my inner emotional resilience, I’ve gained invaluable coping tools and I’ve been given the gift of learning to truly appreciate what I have.
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Dedicated to the one I love…

June 16, 2013November 19, 2017

Recently my sister told me that someone who saw me speak at the last fundraiser thought I was “amazing.” She then told me that this person said my husband was even more amazing. I wondered how he knew that without even knowing or talking to my husband, because of course, it is true. And I thought about it for a while. And in honor of our 10 year wedding anniversary yesterday and Father’s Day tomorrow, I wanted to dedicate this blog post to Noah- my amazing husband and tireless father of our two boys.

When I fell in love with Noah, I felt like I had been catapulted into an altered state. As a psychiatrist, I can’t really say it was a true mania, but it came close. I was euphoric and giddy and barely slept or ate for a week. I had found my true love. I felt a peace within me I had never known. I wrote in my journal that no matter how hard life was going to get, I knew it was going to be okay as long as he was by my side. I wasn’t afraid anymore of anything. And then three years later, life got hard.

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Last night’s fundraiser…

June 7, 2013November 19, 2017

Last night I spoke to about 200 people at a Hadassah fundraising event. All of the money was going directly to fund HIBM research in Israel.

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