I have so many updates I don’t know where to start.

We have seen a slight bit of progression of NCL, but also, some improvements. This disease is the definition of confusion.

• Doug had one mild seizure in the middle of the night two weeks ago. I woke up to it, and it only lasted about 20-30 seconds. When Doug came out of it, he was disoriented but it was also the middle of the night. He went back to sleep and it has not happened since. I do not know if that means Doug will have seizures or not.
• There was a different night that he woke up at 2am and was immediately frantic and was up and down and pacing and circling and up and down and darting here and there and I was unable to calm him. I had no idea what was happening. I took him outside in case he had to go and that seemed to make it worse. There was snow on the ground and he just got more and more disoriented and I had to get a leash to get him back inside. Once inside, I turned the lights on and he seemed to settle a little. That is when I realized, he might not be able to see clearly. He stood there, panicked, tail tucked and I started crying. 3am is not the best time to get a schooled by Neuronal Ceroid Lipafucisinosis. I gave him a sedative, and he was able to fall asleep. The next day he was wobbly but, ok. Thankfully, it has not happened again.
• There are some positives. Doug falls over less when he shakes his head now. This is because he has started adapting to what he is experiencing and has started widening his stance. It is hard to put into words how proud I am of him on this. This little victory, is huge.
• His wild eye movements (there is a vet term but why use that) are not as bad, the neurologist agreed on that.
• He had his first acupuncture session and the days that followed, Doug was like a puppy. Not that he isn’t usually like a puppy, but his movements were more fluid and he was more carefree.
• We had a follow up with the neurologist. We have not seen her since he got diagnosed. I only had one question. What will are we facing? I still don’t know for sure. She said Doug might live with the disease well for a couple years or he could start to decline quickly and not be here come six months. That information was not new. She thought he looked great and she noticed his improvements. Then she said something to the effect of ‘We will have to see what progresses faster, the NCL or his spinal issues.
• Wait, what? Hold up, come again on that last part.
• She said that she had told me last time when we were there that he likely had a brain/spinal (connection?) issue and I thought that was one thing it could be and it was only one thing total so when we got the NCL news, that was the ONE THING. Apparently, she feels he also likely has Cervical Myelopathy. That I can pronounce because that is what Jake had and it’s what made his hind legs give out.

She said the words and I looked at her and said – OK. That’s it, OK.

I don’t have questions about Cervical Myelopathy, I lived it for 3 years with Jake. She may have talked more after that, but Doug and Jake’s mobility started flashing in my head in unison and overlaying them made me realize I had never seen it but it was right there. Doug has the same exact wonky gait and legs that Jake had when he first came here. They literally maneuver the same exact way. How did I miss this? I did worry about how he would face both, but the reality is, he may not live long enough for the CM to impact him as much.

It guts me to write that, but that doesn’t make it less true.

Doug and I had a lovely 3-day weekend. There were a few I-am-human-moments that I said – why him. Why dump on him. This isn’t fair. Why do we get the worst things.

But you know what. We don’t only get the worst things. We pretty much get all of the best things that life has to give too. I can’t scream out WHY US when I also don’t scream out HOLY SHIT WHY DID WE GET SO MUCH TO LOVE.

This life gave me Melvin. That alone negates me personally being able to ask, why me.

And Melvin and I got to love Jake. And that was absolutely meant to be and we were there for him that morning his legs stopped working, exactly where we were supposed to be and yes, life could have gone easier on him, but he couldn’t have been loved any more than he was and I couldn’t be more grateful he was mine.

And then by some great miracle, Doug. A stray, with puncture wounds and two legs growing all wrong, who could have ended up in a backwoods dog fighting ring in SC. But someone decided to get him out of there and send him to DC. And I found him. And he saved me a billion times more than I saved him. He might have died an early death down there. But instead, he now only knows joy and love and food.  Melvin taught me how to love unconditionally. Jake taught me how to persevere with joy in my heart. And Doug has taught me to enjoy the ride. And my grateful heart turns those things into beautiful lives full of love for the boys. And yes, we have had a lot of terrible and a lot of heartache, but the amount of joy in our lives is infinite. Doug may have a shorter life than I had hoped, but he doesn’t know that. He thinks he’s been alive forever and life has always been incredible. He doesn’t remember his old life. He has a life where he can pack more nuclear joy into his few years on earth than people who live to be 110 are able to. And in return for him saving me, I will carry the grief. He can just focus on basking in the love. And eating all the food.

All of this is very hard. I still cry a lot. But sometimes I cry because our lives are so beautiful and I’m so thankful for all that we have. We’ve already won this life, ten times over, and we are, as always, committed to joy.

Joy is who we are.

Also, don’t forget, I bought Jakie the large dog stroller, just in case, and now we have a just in case and can you even imagine how adorable Doug will be with his head sticking out of the top and all his sister wives riding shotgun?!

xoxo,

t&d

I have been staring at this blank page for hours, unsure of how to begin. My brain is not able to put this into some order that makes sense, so I am just going to give you info as it pops into my thoughts.

• We had to postpone Doug’s endoscopy because Doug was having dizzy spells and falling over when standing. He was also falling off furniture (in a world where he had never fallen off furniture before; it is why I bought the new couch). Also, when he shakes his head, his eyes started rolling back into his head and I was able to catch it on video. Our regular vet felt we needed to see the neurologist over having the scope done.
• The neurologist confirmed that Doug had deficits. I went in thinking it was likely inner ear. They put that pretty low on the list of things they thought it was. She was very clear that she thought it was serious. Four of the five things she thought it could be (brain tumor, malformed brainstem/spinal cord connection, too much spinal fluid or a brain that was too large for his skull), would be able to be seen on two different MRIs and a spinal tap. We had fasted that day just in case, and none of those test are new to me. Melvin had one MRI and spinal tap; Jake had two. At no point during this conversation did I flinch. We would figure it out.
• She then told me that there was one other thing it could be. A brain disease where the brain stops controlling the dogs body. The first sings are unsteadiness, stumbling, dizziness, uncoordinated eye movements. She said, it was the worst possible diagnosis since it was 100% fatal. All the air left the room. What about it just being an inner ear issue?! She said there  was a genetic blood test that took 2-4 weeks to get back. If the test came back positive, we would not need to do the MRI or Spinal Tap. I agreed to have the test to rule it out.
• I waited 26 days for the results. Everyday, watching Doug not getting better on antibiotics and accepting the fact, it was not an inner ear issue.

When Melvin died a month after his 10th birthday, I was heartbroken in a million different ways, one of which was that I would never know old-man-Melvin. When Doug came, I knew the universe was giving me a dog I would have the longest and that even though Melvin didn’t grow old with me, I would get to see what Grandpa Doug was all about. When Jake died, I knew that I would likely never care for a living creature to the extent that I did with him. And that, it was unlikely another of my dogs would go through as much as Jake did. Jake would always be my baby. I also assumed that my heartache with the dogs, had reached a lifetime max.

I was wrong, about a lot of things.

Doug has a fatal, neurodegenerative disease called Neuronal Ceroid Lipofuscionosis (NCL). It turns out I won’t get to know Grandpa Doug after all, the weight of even typing that, suffocates me.

I got the results yesterday.

• Heartache is the bulk of what I feel. Not just the realization that I will lose Doug, but much more so the fact that Doug won’t have the opportunity to be showered with love for many more years to come.
• This disease is very rare. Mostly because breeders test for the mutation before breeding since it is so terrible. I feel actual rage that Doug was likely born to some backyard breeder that didn’t give a shit.
• It being rare leaves me with a ton of unanswered questions. The symptoms are breed specific and there has not been enough Am Staffs reported to have it for me to have much insight into what to expect and when. The neurologist office has seen one other case, our vet has never seen it.
• Every dog, regardless of breed is different. Some dogs decline more slowly, some decline rapidly. Right now, we are throwing out about a year. Give or take, whatever terrible version of math that is.
• All I really know is that it usually strikes Am Staff’s between ages 3-5. Doug is 4. Doug’s brain has already started communicating less with his body, and that will continue. I don’t even know when it started because his hind leg issues have always made him clumsy. He might go blind, he might not. He might not recognize things that should be familiar. It might be painful, it might not cause any pain. Some dogs have seizures. Obviously he is going to be confused as to what is happening to him. The given is that, eventually, his brain will cut ties with his body and mobility.  So sometime between today and the day before joy no longer reigns supreme, I will have to say goodbye to my boy.

I will find a way for Doug and I to make a difference. I already plan to write down every symptom, every day. I will take video of his decline. One day, we can help someone else as they journey towards this horrible fate; they will at least have one person who says ‘I understand and here is what I know’. This is one of a million ways that Doug love, will live on. If any of you know any dogs who have had this, especially if they are an Am Staff, PLEASE let me know.

The other way he and I will make a difference, is that we will continue to find the joy in every day we have left together.

There are a few things giving me strength. My family and friends. Melvin, as always, is with me. And I know that when Doug is no longer here, Melvin will be there with him. And Jakie too. When I heard the results, the first thing that I realized was, I don’t have to change a thing to give Doug a beautiful forever. Live a life where if you find out someone is dying, you can rest easier knowing, you are already giving them the very best of who you are. 

Lastly, and way more importantly, life is not meant to be measured in length. A long life is never the given. Instead, it is to be measured in width and depth. Doug’s life is infinitely wide and wildly full of joy, and I will never allow for anything but that for him.

xoxo

t&d