Neuronal Ceroid Lipofuscinosis.

It’s been a week and I still can’t pronounce it.

I continue to look for someone who has been through this disease with their dog. If I can’t find one person among any breed, I’m not sure how I will find someone with an Am Staff.

My emotions range from heartache that this is happening, to moments of rage that this is happening.

As I have mentioned, Doug has always been clumsy. His hind legs may be bionic but apparently for Doug, bionic = mediocre. He has never been able to stop himself when he is running too fast inside the house, just ask the 50 things he runs into daily. Going down the steps in the morning he goes three at a time and going up in the evening, is very, very slow.  That has pretty much been him since the day I got him, before and after the leg surgeries.

So a few months ago, I just thought he was more clumsy. It was cooler, maybe his arthritis was acting up . There were a few times early on, that he tipped over, but since I couldn’t anticipate it happening, I never really saw what preceded it. I thought he tripped, or turned a leg the wrong way and it gave out. The first time he fell off the couch, he was sleeping. So when it happened again the same day when he was awake, I thought nothing of it. We all have those days.

At no time did I think that he was dying. Because I had talked myself out of thinking that way the first year with him. I would say: it won’t be like Melvin. It won’t be like Jake. Have faith.

As he started falling off the couch more, and stumbling for reasons I couldn’t figure out, I knew it was something, but I still was leaning towards his legs. But then one day, I was taking a video of him for Instagram and during the time I was taking it, he shook (as all dogs do many times a day), and that’s when I saw it. I stopped recording and pulled up the clip to see if I had imagined it. Something was wrong, and it was not his legs.

This is the video clip I took that day. He shakes, and immediately after, his eyes roll back into his head. A wave of motion then runs through his body and you can see him falter a little.

I may not know for certain when his symptoms started, but I know the exact moment I knew it wasn’t nothing.

The following are Doug’s current symptoms:

  • He shakes about 20 times a day and his eyes roll back into his head about 15 of those times. Sometimes he falls over, sometimes not. That has not changed much since I first noticed it. This is by far the hardest part to watch at this point. There is a part of me that wants to look away, but I owe it to him to watch every single one and count them out for our documentation.
  • He is wobbly on softer surfaces.
  • He stumbles sometimes when he is going faster than a normal walk pace.
  • I can tell when he is having dizzier days than others. On those days he is a little out of it. He tends to stay close to me those days. He also stares into my soul on those days and I know he knows I know. I stay close to him too.
  • There have been two shakes to date that I have seen where he froze for about 3 seconds after it ended. I don’t think he could move for those few seconds, but then he was fine.
  • He has had 2-3 bad days. When he can’t walk in straight line, more like he’s in a fun house. I mean our house is fun, but…
  • He is on a few new supplements (CoQ10 and Super B Complex) to maybe help. He is also on a motion sickness drug. I have been giving it to him in the morning but I am going to move it to dinner because he wakes up dizzy and I think it might wear off during the night.

Our vet has not had much luck digging anything up but she did find one piece of research that suggested Am Staffs were not as likely to go blind. I don’t know if that is true or not, but I’m holding onto it pretty tightly.

While we were waiting on the test results this past month, a little voice kept whispering what if you lose Doug too? I almost talked myself out of doing Christmas cards because of that stupid voice. I didn’t want to do them if I knew it was going to be his last Christmas. So we held the fastest Christmas photo shoot ever known to Santa. I took the photos, edited them, and ordered the card within 1/2 hour. I found out his diagnosis two days later. The cards came this weekend and I’m really F’ing happy we did it. I think this journey is going to be a lot like those cards. Less thinking, more doing.

When joy calls, we gotta answer.




11 thoughts on “Neuronal Ceroid Lipofuscinosis.

  1. Its not the same, but at the shelter I volunteer at we had two litters of puppies that had a similar genetic defect. It’s called globoid cell leukodystrophy, and has similar symptoms. In the first year, some of the puppies started losing control in their back end and it progressed to the point where they couldn’t walk, stand, go to the bathroom, etc. apparently its only seen in a handful of breeds, so it was very strange that this group of puppies, who were collie mixes, had it. I’m sorry for what you’re going through with Doug. Dogs are the best, but losing them is so heartbreaking.

    • Thank you for following along. ❤️ That is so (sadly) interesting. From a rareness and only in a few breeds affected standpoint, it’s the same. Doug is mostly Am Staff but still a mutt (25% Eng Bulldog) so it’s shocking to find it in a mixed breed.

  2. I’m so glad you did the Christmas photos too. I recently saw a thing on the news about a little girl who had a very similar condition. Similar rarity, symptoms, progression, and end. Her mom somehow enlisted the right doctors and researchers who came up with a treatment in a year. I’ve been thinking about that since you first posted about this, wondering if there might be a treatment connection. I’ve hesitated to mention it, but figured, what the heck, it can’t hurt. I can try to find a link to the story if you have any interest in seeing it. It might also have information that will help with the documenting you’re doing.

  3. Now we need to see the Christmas card! 🙂 You have so many great pics of your boys. I get the impulse to look away, but I’m so glad you’re strong enough to document the journey instead. Another dog’s person is going to be so thankful to find it in the future.

    This made me think of you: Two weeks ago Duke wasn’t feeling well & didn’t want to eat. We usually don’t feed wet food, just crumbled toppers on their fancy kibble. I mixed some canned food in & Duke & Relic were SO HAPPY! If it makes them dance around the kitchen like Doug at dinner then that’s what we’re doing from now on. It’s so easy to bring them joy, it’s awesome. Love you guys! 💕💕

  4. Wow, that video is so disturbing and sad. I feel for both of you. I witnessed my sisters’ neurological decline and subsequent death this year. Different disease, but much the same symptoms, brain no longer communicated with body. I love what you wrote “there is a part of me that wants to look away but I owe it to him to watch every single symptom…” . I watched my sister throughout her entire illness, I watched because I loved her, and did not want her to face it alone. I watched because if she had to live it, the least I could do was not look away. I put on a brave face, researched my ass off, offered every type of support I could find, offer, and muster, including laughter. And I was there with her until the end, even providing her hospice care. This is what we do for those we love, even when it is gut wrenching hard. But you already know this. Sending virtual hug for you and Doug

    • You are an angel on earth. I imagine your sister felt beautifully accepted by you, and isn’t that what we all want? When there are hard days ahead, I will gather strength from you and your sisters journey. ❤️❤️❤️

  5. Tracy, as we enter this New Year, I want to send you the strength to see this next leg of the journey through with joy. As you well know, the only thing that matters is this moment, right now. Treasure the good moments and love Doug through the hard ones. I know I’m preaching to the choir, but sometimes it’s good to have it reaffirmed.

    Big hugs from Boise!
    Chris (from Boise)

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