Degenerative Myelopathy: The ‘Heartbreak Disease’

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Willa had the energy and personality of a smart working dog. Her guarded personality led her to trust only a few people. To most, she was known as intense and reactive; to the lucky ones, sweet and sensitive with a dash of goofy. I had to quickly learn, much to the help of training professionals, how to work and live with a dog as intense as Willa. She worked on building her confidence. I worked on accepting her for who she was. I fell in love with who she was. All in, this dog was mine, and I couldn’t imagine a life without her. Ever.

We did everything together. I realized this dog didn’t come into my life; I came into hers. It’s a perspective I needed to have to fully understand that dogs are not cookie-cutter personalities that simply fit into our lives like a puzzle piece. I accepted her for who she was, which I believe bonded us even more.

Then one day, while on a hike in 2019, when she was eight, Willa started scraping her back left foot on the ground. A veterinary neurologist diagnosed her with Spondylosis, a narrowing of her spinal column from osteoarthritis they believed due to an old injury. We were told to keep her from making sudden, sharp movements and not to jump, as some dogs can get paralyzed. The doctor said they could live long, normal lives with proper care and physical therapy, so I immediately got her into underwater treadmill at a veterinary rehabilitation center.

Generally, dogs with this condition improve with therapy. Willa did not. She declined so fast that the rehab veterinarian asked me if I knew about a disease called “Degenerative Myelopathy.” She proceeded to tell me they refer to it as “the heartbreak disease” because there is absolutely nothing to cure it. She told me it’s genetic and it’s very similar to human ALS. My heart sank. I knew this was what she had.

While the world stopped with Covid, mine stopped on January 10, 2020. This is the day her results came in as “Affected” by Degenerative Myelopathy (DM). Willa’s genetic testing showed she had two copies of the mutated gene, SOD-1, identified as a major risk factor for DM. Already needing grippy shoes from slipping, Willa’s DM journey was already in full swing.

What is Degenerative Myelopathy?

DM is a neurologic disease resulting from significant deterioration of the myelin sheath inside the nerves. Myelin helps the nerve impulses travel; however, DM causes it to degrade, so the nerve signals are interrupted. The back feet are affected first, then gradually move forward to the front limbs, causing paralysis as it progresses. Eventually, major organs are affected, thus resulting in death. Depending on the dog, this process can be quick (3-6 months) or slow (2-3ish years). Degenerative Myelopathy is often misdiagnosed, much like it was for Willa.

DM affects over 100 breeds, but has been found in higher levels in German Shepherds and Corgis. The gene mutation “turns on” in the middle to older age of affected dogs (between 5-14 old).

 What therapies are available to help?

Although there is no cure yet, there are therapies that can help with the symptoms and may slow the progression of the disease. Keeping the nerves firing through activities like walking, swimming and physical therapy is key to helping a dog with this disease.

There are many nutritional supplements to help strengthen the muscles and nerves, and I even found “DM Protocols” from various sources. I had to do a lot of my own research and found support groups online that could help with my biggest fears and questions. I also found my integrative veterinarian tremendously helpful with Chinese herbs and acupuncture to support Willa’s symptoms.

How to help

If you are buying from a breeder, ask if they genetically test for this disease. Reputable breeders, particularly of the most affected breeds, will genetically test their dogs before breeding and won’t breed a dog, even if the dog is a carrier.

Research is being conducted by various universities and with Morris Animal Foundation. We are partnering with Shade Out DM Foundation with our photos with Santa this year. All proceeds will be donated to Shade Out DM, as they are dedicated to raising awareness and raising funds to support ongoing research.

Willa’s story

Willa was amazing throughout her battle with DM. I couldn’t believe how strong she was in mind and body, even as it was failing in front of her. The athletic, independent, guarded dog now had to rely completely on other people, including a slew of professionals, as we navigated her care. Every one of them fell in love with her. I fell deeper as well. She took to a wheelchair which gave her some freedom back for about a year, but then her front legs became weak and affected. She swam twice a week at Paws Aquatics, an amazing space where swimming made her the happiest, which made me the happiest as well. About a year ago, it was apparent that our time together was limited. Her body was tired, and almost completely paralyzed. Willa lost her battle on January 11, 2022, exactly two years since her official diagnosis and three years since her inaccurate Spondylosis diagnosis. Willa was only 11.

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