I have said this one billion times before, joy is not ignoring reality, it’s about making the best of it. And in so many unlikely ways, we found joy this year.
I started off the year, not knowing if Doug would be here with me at the end of it. When Covid hit in March, amidst all the fear and uncertainty, a wish I’d had came true. I was working from home full time, in that year when I was not sure how long Doug would be here.
Pure joy, even in a pandemic.
As we moved into summer, our family got a baby! A reminder that even when the sky is falling, joy can sneak in.
Also, I had more time to work on Bob’s trust. And he’s finally eating in the garage, just in time for winter. I guess I have a cat now. Words I never thought I’d type!
Covid shifted some of my anxiety. As spring moved into summer, and we hit the 6-month mark of Doug having NCL, I realized he would outlive the initial 6-month timeframe. In fact, his disease was progressing so slowly, his medical team barely noticed much difference in him. That brought with it, room to breathe. And the moment I took that first deep breath, the human medical community was revealing that Covid causes blood clotting in patients without clotting conditions. I already clot too much. How would I ever survive a virus that causes more? So I worried less about Doug, and went into some hyperdrive on quarantine. I worked really hard on finding a balance. Rearranging my house and pantry ten billion times and continuing to celebrate life with Doug has helped!
I am lucky enough to still be working from home. I regularly don’t know what day it is. I can’t believe we are at the end of December. Doug was diagnosed over a year ago, and even though there is still almost 100% uncertainty about what will come, NCL does not rule our day. Joy continues to win.
The time I have been given with Doug, is a priceless treasure. When cancer flipped our lives upside down with Melvin, we only got 40 days. When cancer showed up again with Jake, we only got 5 months. Every single day with Doug is new and beautiful and unexpected and everything I could ever ask for.
2020 gave us the one thing we needed the most, time together.
Merry, merry! Happy, happy! With so much love, Me, Doug, and Bob! xoxo
Wow, it has been a hot minute since we’ve been on the blog! I just read our last post and I don’t think too much has changed.
Most of you know, I have a blood clotting condition, so I am in a pretty strict quarantine which means, so is Doug. The company I work for is still 100% work from home, so I have had so much glorious time with my boy. Would I like to be able to see more people and do more things, absolutely! But time with Doug is a beautiful outcome of this rather tragic predicament the world is in.
Since late April…
We went to the beach with my family! Everyone quarantined in advance because there is a newborn in the family so we were all able to come together safely at our beach house. And that included Doug! He was around small kids, 24/7, for the first time ever. We took it very slow, he had a gated off area at the beach house so he could see the chaos but not be the chaos. After a few days of seeing a 10, 6, and 2 year old run back and forth non-stop, he was pretty much oblivious to them. He was also fine with me holding a baby. The 10 year old already loves dogs but at the start of the vacation, the 6 year old was not a fan. She left vacation crying, because she was going to miss Doug so much. Further proof that Doug is irresistible.
Doug went into a pool for the first time! It wasn’t planned (although there was no danger), and at first he sunk. All we saw were his GIANT eyes as he wondered WTF was happening! My BIL was the lifeguard on duty and helped Doug learn to paddle. He got out of the pool and never got back in. Typical Holupka dog.
Health wise, Doug is doing, great! We saw the neurologist recently and she is amazed at how well he is doing. She even said that the first thing she sees in him is joy, not NCL. He has bad days but he always rebounds. A bad day might look like him falling over for a few seconds, his eyes rolling back in his head, or him being frozen for a few seconds. It might be him falling over each time he shakes. These might go on all day, but the next day is much better. A good day isn’t free of NCL, it’s just that he is able to travel through the day and navigate the disease. The only thing he can no longer do, is run fast. When he tries to run, his body doesn’t move on demand. So half of his body is running and the other half isn’t moving at all. He rarely tries to run anymore, and honestly after his leg surgeries, his running has never really been easy or smooth.
Doug’s disease is progressing slowly. This means that we can learn a lot from Doug and we can help other dogs and families that face this. So far, about six people have found us through google, based on my sharing Doug’s story. Not all of the dogs have as much access to great veterinary care, so we share everything we are doing with them so that they have the same info we do. Doug does some traditional supplements, some holistic Chinese herbs, and acupuncture. Hearing the neurologist say he is doing so much better than she expected, makes me celebrate all our efforts. But either way, he will always know love, and the depth of his joy will always be my guide.
I go back and forth on getting a dog right now. Doug is so happy and content. He has a disease that causes dizziness yet he has never been more, balanced. I don’t know how long we have before he can’t maneuver as well. There is a damaged part of me that recalls what it was like to not have dogs in the house, but there is also a part of me that wants to pack Doug’s entire life into a this smaller timeframe. I remember the year I had when it was only Jake and I, and I knew his time was short. He absolutely deserved all of me. Doug deserves that too. None of it is easy, I am tearing up just writing this because I really do not know what is best at this point. We are winging it. Every. Single. Day.
On September 1st, we celebrated Doug’s 4 year adoption anniversary. Four years ago, I was falling apart over Jake dying and there being no dogs here and I was trying to meet dogs but every single one of them felt, wrong. I decided to stop torturing myself and I unfollowed all the rescue sites so I could take a break. But somehow, a dog named Hootie snuck into my feed. There was no panic, no breakdown, just a knowing that he was already mine. Through the feet mouthing, the leg surgeries, his anxiety and now the NCL, love has helped us persevere. When Doug first came, I thought he would be the dog I had the longest. I still very much hope that is true. I seek only to control the things I can – he is my beautiful purpose and I want him to know as much joy as possible.
The whole ‘what day is it’, is so real right now. Maybe that is because every day is the same version as the previous day. I still feel like it is March 20th but that March 19th was a year ago. I have reorganized the house 72 times. I have started moving furniture to different rooms and I often decide to space out chores, just to have something to do, on all the days. Some days Doug is happy I am here and some days he wonders why I never leave. I don’t recall the last time I came home and he was excited to see me, because when I leave, he usually comes with me.
But having this time with him, is everything that is beautiful in this life. During our time in quarantine, we have reached six months with the onset of Neuronal Ceroid Lipofuscinosis. It is not lost on me for even one nano second, that many dogs do not live beyond six months once symptoms start to show. Six months seems to be how everyone talks about it. Statements like: If they live six months, let’s see where we are in six months, the next six months are telling. Now that we have reached this milestone(?), I don’t really know what the next chapter is. Currently, Doug is in the progressing slowly segment. If you have to get NCL, this is the coveted group to be in. It means that the disease is progressing slowly and steadily. This gives us options to dial treatments up and down and more importantly, it gives Doug a chance to acclimate. We hope to stay in the slow/steady group. I would give just about anything to stay here forever. The other, less appealing/heart wrenching group that goes beyond six months is, sudden decline/rapid deterioration. There are no signs that is coming. So each time a new symptom pops up, we have to sit and wait to see if it is the bottom dropping out. So far, I feel like the luckiest, most blessed, two creatures on the planet. Which is a lot, for facing down a fatal disease.
NCl is hard to watch with slow progression alone. I try not to visualize what fast decline would be like.
Jan and early February, Doug was great. He actually showed some improvement. He started compensating for some of the dizziness mostly in his stance and how he walks. He is more consistently dizzy now. I don’t think he can compensate much more on that part. He falls over more often and is generally just more unsteady. Good still outweighs bad, by far.
I desperately want to help him. I can’t make him less dizzy and I can’t explain to him why it’s happening. I watch him stare into space and try to get bearings and it’s hard. I hold him during those moments and I know he feels loved. I don’t know if my holding stops the room from spinning, but those moments are infinitely special. Sometimes the greatest gift, is just showing up.
The disease has slowed him down. He can’t play with toys in the way he loves to, by throwing them up in the air and having them land on him and he pretends he’s tackled and it goes on for an hour. Now, he mostly plays with toys laying down. We have a slight slope in our back yard and he can no longer find balance on it. Steps are getting harder. Not impossible, but takes him about one minute to walk up the steps at night.
None of these things are the end of the world. But let me remind you, Doug is four. Spiritually, Doug is an exuberant adolescent who loves mischief and destruction and exuberance. His brain however, is aging faster. Little pieces disappear and it’s hard knowing when something he can do now, he won’t be able to do in the future.
This disease feels the most unfair (compared to all the dogs’ issues). Part of that is likely that we are currently living it, but a good portion of it is because Doug is young. I might not argue, or complain, or rant about how hard and unfair losing him will be for me, and I’m still forced to recognize that in some bizarre way, Doug may be my most healthy dog. But none of this is even remotely ok. That he is being held down by this disease at such a young age, when these are the years he should be running zoomies with his bionic legs. If someone came to me and said, they could heal Doug and he would know happiness and joy but he couldn’t be with me, I would let him go. There are a lot of dimensions to rescue, but for me, it’s giving the boys a beautiful forever and a long(er) life measured in joy. Doug deserves to write all his chapters.
No one has come knocking with the cure. So instead we do what we do best. Packing a shit-ton of joy into the time we have. And Doug still celebrates every moment as if it is the very first glorious moment of his life. He is a joy junkie, just like his brothers.
Joy isn’t blindly pretending that none of this is happening or that any of it makes sense. Joy is acknowledging all the shitty parts, but not forgetting to see all the beautiful parts that exist simply because we have today. Doug tipping over when he poops stinks (pun intended), but he still believes the world begins and ends with all things food. Holding him may not stop the room from spinning, but it doesn’t change that Doug was homeless for months and now he is still living his very best life. Joy is recognizing that Doug exists outside of NCL. It’s impacting him, but I will not let it define him. Joy is also about not allowing all the big bad parts to overshadow the little moments. The little moments are where we live. The little moments are where we shine.
Doug healed a lot of the grief of losing Jake and Melvin, and the idea of losing him makes all grief feel like a nearby brewing storm. I recall the darkness I felt to not have any dogs in the house after Jake died. The reason Doug is even here is because that darkness started to feel overwhelming and I decided to adopt sooner than my heart might have felt it was ready for. Part of my healing from the loss of Melvin and Jake, was to put my active love for them into something here. I have an infinite love for them, but there is always going to be the need to give that love in the here and now also. And the thought of a Melvin, Jake and Doug love lingering aimlessly with nowhere to go, I am not sure how to prepare for that. But I think it likely looks like rescuing the next dog, while Doug is still here to show them the ropes. That dog, will have to be the unicorn of unicorns to fit into what we have coming. I believe that dog is out there though. The same way Melvin, Jake and Doug all found their way here with very little effort by me.
But today, in the center of a pandemic, joy is being home with Doug during this crazy crisis. I get to spend all day, every day, with him. I will always look back on Covid-19 as the time the universe gave me extra beautiful moments with my boy. I am fortunate to still have a job, and to be able to work from home. Most of the parts that are hard for us, stem from a lot of privilege to begin with anyway, so we are pretty much among the most lucky ones. I would never say ‘choose joy’ every damn minute of this crazy time, but instead, don’t forget to see the joy. I don’t wake up on any day and think, ‘one more day of quarantine’. I wake up every day grateful that Doug and I have another day together.
Hang in there. We know it can be hard. To those on the front line, healthcare workers, grocery staff, those doing delivery of any kind, those essential workers who are keeping us up and running, THANK YOU. You are the heroes of the world. For every complaint that creeps into our quarantined minds, we should send out infinite gratitude to those doing the hard work.
Hey interweb people! You out there? It’s me, Doug E. Fresh Holupka (that just rolls off the jowls, doesn’t it?)!
I’m giving the update this time because no one knows better about me than the Doug! OR is it no one knows better about the Doug than me? Anywho…
My beautiful body got more beautiful. Most people can’t look at me without being like ‘ohhhhhhhh maaaaaaaaaaa gaaaaaaaaaadddddddddddd, he is SOOOOOOOO incredibly handsome!‘. I just nod, because I am.
We still have a stupid cat named Bob. boooooooooooo bobbbbbbbbbb!
I have a dizzease called urinal polaroid lips and fish and noses (Neuronal Ceroid Lipafuscinonsis). I guess it’s called a dizzease because it makes me verrrrrryyyyyy dizzy. Like whoa, what’s happening, why is the room spinning or is that me spinning and then I’m not sure so I fall over or off or into something. (S)mother always catches me though, so that’s pretty cool.
We go to the dogtor a lot. It’s fine, I love the car. But (s)mother cries almost every time. I am not sure what that is about. Maybe she cries because no one tells her that she is ‘the cutest’ or ‘the most handsomest’.
She calls a lot of people about me. And she emails a lot. And she reaches out to people of DogBook and InstaDog. She has connected with a couple other (s)mothers who have dizzy dogs so I guess that makes her feel a little better? Or a little worse at first, then a little better? Being a mom must be very confusing. I wonder if she is dizzy too?
The other night one of the InstaDog ladies who has a dog like me told her that her dog no longer recognizes familiar faces. (s)mother read that, then threw her phone on the ground like it was on fire and started crying. The type of crying that is hard for me to watch, like when I first came and she would cry about Jake being gone. She was sobbing and saying something about how she would break in half if I ever forgot her, And if I forgot her, would I also forget about all the joy. And I wanted to howl: MOTHER, THAT WILL NEVER HAPPEN, YOU ARE A PART OF ME, YOU CANNOT BE FORGOTTEN BECAUSE YOU ARE IN ALL OF MY MEMORIES. I TRIED TO TELL HER WITH MY BEAUTIFUL EYES. I COULD NEVER FORGET HER. THE JOY IS WHO I AM. But she was still very worried about this part so then I purposely fell off the couch to snap her back to the here and now.
Does anyone out there know what ‘be careful’ means? These are the words she says the most and I don’t know the meaning so I just usually fall over right after she says it. Does it mean fall over or crash into things? Because if so, I am doing it right!
She bought me a new bed and a blanket that gets hot and I love them more than food.
I mean I guess that is it. Mostly our lives are about me being dizzy but not really about that as much as about chasing joy while dizzy. It’s possible, trust me. Hope everyone out there has a great weekend!
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?!
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.