Communion Of Dreams


Machado-Joseph Disease: all things being equine …

My feet hurt. My hands hurt.

Actually, let me be a little more specific: the backs of my hands and wrists hurt. The tops of my feet and the fronts of my ankles hurt. If I were on all fours, you could see the symmetry of the places that hurt. It feels like all four joints were hyper-extended, and now hurt from it.

I put it into these terms because there’s value in understanding something about MJD: it affects the cerebellum, that part of the brain that controls movement and coordination, as well as having a role in pain awareness and some emotional/intellectual controls. This is an ‘old’ part of the brain that we share (in evolutionary terms) with most vertebrates.

Like horses.

Why do I mention horses, specifically?

Because of this:

Episode 51: Shivers Horses and Its Association to the Cerebellum

In this episode, Dr. Audrey DeClue focuses specifically on the association of the cerebellum to shivers horses. She shines a light on the existing, published research on shivers and the trouble with conclusions based on a small sample size. She also includes an interview with longtime friend, Celeste, to provide a powerful story of what it is like to live with a degenerative cerebellar lesion.

The ‘Celeste’ there is my sister. Who first experienced the onset of MJD symptoms about 20 years ago, and has been living with the disease since.

The whole podcast is well worth listening to, but the discussion with my sister starts at about the 28 minute mark, and lasts for about 20 minutes. In the interview Celeste is forthright about the challenges and pain associated with the disease, and how her symptoms have evolved over the last two decades. In listening to it, I was struck not only by her astute awareness of her body and how it has changed over the years (she is very smart and observant, no surprise) but also in just how much her early experiences echo what I have been experiencing the last couple of years (though my symptoms are mild compared to hers). That includes not only symptoms, but the frustrations of trying to get doctors to actually listen to her describe her subtle symptoms early on.

It’s an excellent interview, and Dr DeClue is a sensitive and talented interviewer. I encourage you to give it a listen if you are interested in this rare disease, and what it is like to live with it.

Jim Downey