Thursday, May 21, 2015

PDE Updates and Action Plan

Hi everyone!  I know it’s been a while, and perhaps some of you might be wondering if I’m still around.  I try to stay aware of any news regarding Pug Dog Encephalitis (PDE) and you can always contact me via email, boostrom34@gmail.com, or on Facebook (Payton Boostrom is my profile name, and you can message me even if we aren’t friends).  Besides this new post, I have also updated the blog by creating pages with the latest information about the disease, research, and treatment (links are in the text below).  I also want to reassure you that this blog, Pugnacious P, will forever remain online in honor of the toughest and sweetest and most inspirational pug, my angel Payton.  I will continue using it to raise awareness of PDE and spread hope of her miraculous story. 


If you don’t know what PDE (or more accurately, Necrotizing Meningoencephalitis (NME)) is, please read my summary – What is PDE?, which I’ve updated and also briefly reference two other common inflammatory central nervous system diseases, Granulomatous Meningeoncephalomyelitis (GME) and Necrotizing Encephalitis (NE).

For those of you who are new to this blog and Payton’s fight against PDE, I’d encourage you to read through the compilation of posts that detail her experiences – Payton’s PDE Story. 

Perhaps most importantly, for those of you discovering Pugnacious P after a frantic Google search suspecting your pug may have PDE, this post outlines what I would do today.  I am not a medical doctor or vet of any kind, and I provide this information solely based on my experiences and research trying to give Payton the best possible life.  So please consult your veterinarian before making any health related decisions about your pet.

Act fast.  You must act fast to give your pug a fighting chance.  See a vet immediately and consult a specialist/neurologist if at all possible.  Trust your instincts.  Note that some pugs do not display the entire classic profile for PDE so do not assume that the list of symptoms you find in on-line resources is complete.  Don’t be afraid to seek a second opinion.  Even Payton’s neurologist has consulted on other cases around the world after being contacted from someone who found this blog.
Treat.  It is imperative that treatment start immediately and aggressively if your vet has diagnosed PDE/NME/GME/NE.  Do not let any discouraging words stop you from trying to save your pug.  There IS hope!  Many vets, and even some neurologists, are just not familiar with PDE (and related inflammatory diseases) and not up to date with successful treatments.   Please read the PDE Treatment Guide I put together that summarizes the key medications that will fight this tough disease.  In this guide, you will also find a link to the exact drugs that worked for Payton and another regimen from a neurologist who claims to have dogs in remission.  I’d highly recommend bringing those two treatments to your first appointment.
Learn.  Do your homework and learn as much as you can.  But realize that many on-line resources contain narrowed thinking and incomplete or out of date information.  
Hope.  Despite what most on-line resources imply, know that there is hope for a quality life with successful treatments!  If you scan through other blog posts, it won’t take long to really get a feel for the wonderfully adventurous life that Payton led despite having PDE.  She truly was a miracle, living with PDE for 5 ½ years to the age of 9. 
Plan.  Unfortunately, there will come a time when we must say good-bye.  Please think about allowing your pet to become a part of a research effort when that time comes.  Arrangements can be made for veterinary pathologists to examine the brain tissue while still allowing your pet to be cremated and returned to you.  I know for me, it is a comfort and gives meaning to all of Payton’s struggles, and I’m so proud that she is still fighting against PDE by furthering Dr. Kimberly Greer’s research.  Through this research Payton is helping other pugs and their families.  So please consider contacting Dr. Greer (PDE Research Information) or another PDE researcher to discuss options.  Note that it is crucial to have their body refrigerated, NOT frozen, if you are waiting for further instructions. 

For those of you who are wondering what you can do in the fight against PDE, consider some of the following suggestions.

Share.  Raising awareness of this disease is crucial.  Even some pug owners have never heard of PDE, so talk to your pug friends about it.  Tell them about this blog.
Adopt.  Consider giving a rescued pug or other shelter animal a home, rather than purchasing a puppy.  There are certainly reputable breeders that test for PDE, but adopting ensures that you have not supported a puppy mill.  Not only will you have a pet that is so appreciative for a second chance at a good life with a loving family, but older dogs are less likely to develop PDE.
Test.  If you breed pugs, please be responsible and test prospective mates in hopes of eliminating the disease in future generations.  UC Davis and Dr. Kimberly Greer developed a susceptibility test (http://www.vgl.ucdavis.edu/services/PDE.php).
Donate.  Monetary donations are always welcomed for PDE research too.  Sometimes the grants and university funding doesn’t cover the medical and logistical costs of helping families who choose to donate samples after their beloved pet passes. (PDE Research Information)

I hope this information has helped.  There has been much progress made in the research and treatment of this nasty disease, and I look forward to the day when I can write about even more good news, perhaps a future cure and prevention!

Love,
Christy (and angel Payton in spirit)

Saturday, September 28, 2013

Payton's PDE Story

Originally published June 7, 2012:


I have compiled a listing of all the posts dedicated to Payton’s fight against PDE. 

What is PDE?


This post was created from her blog page, My PDE Story.  I thought it would be best to make it a blog post that would show up as the most current to make it easy on everyone searching to find out more about PDE and discovering Pugnacious P for the first time.  Please take the time to browse the great PDE resources on the left sidebar of the blog and some new ones in the article we were honored to provide for the Milwaukee Pugfest organization (http://www.milwaukeepugfest.com/living.pdf).  

To those of you that are new to this blog and Payton’s story, I would encourage you to read through not only the links above but the entire blog to really get a feel for the wonderful life that Payton led despite having PDE.  She truly was a miracle, living with PDE for 5 ½ years to the age of 9.  My husband and I are so blessed to have had the privilege of caring for the most special pug.

Appropriately, for the first stop on my “Remembering Payton Tour”, I traveled to Texas to meet Dr. Kim Greer. 


It was so wonderful. She talked with me for an hour and a half. It's hard to express how much I still miss Payton, but my visit with Dr. Greer helped to give me some needed peace and closure. We shared our pug stories, and it became so clear how dedicated she is to this breed.  I am so happy that Payton is a part of her studies.  Dr. Greer told me that they will have to update the age range because of Payton, increasing it from 7 to 9, even though she was diagnosed at age 3 ½.  Personally, I think it's unlikely that pugs as old as 9 would come down with it, but with this disease, who knows.

We talked a little bit about the test Dr. Greer helped develop with UC Davis (http://www.vgl.ucdavis.edu/services/PDE.php).  She warned me that there have been a few cases where a pug did get PDE even though the results showed the lowest risk (no copies of the identified markers). That’s why it’s important to realize the test is not a diagnostic tool.  The researchers have yet to identify all of the markers so the test can’t be 100% accurate yet.  And actually it's these "exception to the rule" pugs that would benefit the research the most so Dr. Greer can figure out the missing markers.  

The test is based on 3 markers that Dr. Greer found, and they have been independently confirmed. Another group thinks they found 2 more so she will be verifying them in the fall.  After doing so, Payton’s samples will be analyzed against [hopefully] more complete findings.  All of the markers seem to be related to the immune system. Dr. Greer thinks that PDE is triggered based on certain immune system responses. She was very interested to hear that 3 or 4 weeks prior to Payton being diagnosed with PDE she had her routine shots and had a bad reaction (which hadn't happen to her before that time).

So please, please make arrangements to donate your pug and/or encourage others to do so if PDE is suspected.  After passing, have their body refrigerated, NOT frozen, and contact Dr. Greer or another researcher for further instructions.  Dr. Greer’s contact info is linked from the left sidebar of the blog.  If you are interested in supporting pugs in ways other than rescue, monetary donations are always welcomed for PDE research too.  We have to do everything we can to help get to the bottom of this horrible disease!

As always, feel free to send us an email (boostrom34@gmail.com) with any questions.

Love,
Christy (and angel Payton in spirit)

Saturday, March 30, 2013

From Pug-a-boo! One year later...

It was a year ago today that we had to say goodbye (for now) to my little girl, my sweet Payton.  A year ago today my heart broke, never to heal fully.


A friend told me that the first year is always the hardest.  I understand why.  For me, it has been the back and forth of emotions, smiling and crying at once.  Part of me wants to fast forward to a time when the sadness isn't so intense and the other part of me wants to go back and relive all the time I shared with her.  This makes it so hard to live in the present.  

Over the last few months, I've felt like I've been losing her all over again. I've been desperate to watch videos and look at photographs to remember her and what it was like to have her here with me.  But right now I still get sad reminiscing because it reminds me of how much I lost.  I know she would not want me to mourn her forever, so I try to be strong and happy.  But I also try to allow myself moments of weakness and sadness.

It still amazes me how much I truly love Payton.  She was my child.  I don't like to compare myself to parents who have lost children but that's what I feel like.  A friend recently wrote that "if love could have saved Payton, she would have lived forever".  This is true not only because of our love for her, but she gave so much in return.  On Payton's blog last year, I described how in her last moments she used all the strength left in her little body to smile and wag her tail at us when the oxygen chamber was opened.  


She was so very sick and yet all she cared about was us.  I get so tense and emotional just thinking about it, and I will never understand why such a perfect soul had to endure so much and leave this earth so soon.  Payton's illness and struggles were a constant reminder that the end would come at some point, and yet I was still not ready. I don't think anyone ever is. I know she is free from the sickness and pain and her body is restored but I am selfish and want her here with me.
 
I long for the day when we can be together again, when I can hold her and kiss her.  But until that day, I will continue on as best I can to live in a way that makes her proud.  I'm still shocked at how many emails I get, about 2-3 a month, from those whose pugs are experiencing seizures or have been diagnosed with PDE. It was always difficult, but with Payton gone, it's even harder. However, I persevere in her honor, proud to carry her story and help others from our experiences. She will always be such an inspiration.  

I have come to realize that I will always carry this profound loss with me, that I will always miss Payton, but as time goes by, it does become easier to live with the pain.  I am still a work in progress, but I sleep better, smile more often, have a lot less anxiety, and can see a light in the distance.  Donald and Daisy can't replace Payton nor eliminate the pain, but they have brought joy back into our lives. And as long as I try to live as Payton did, keeping my senses open to experience the special moments that life has in store for me, I know I will be happy.  A friend suggested that Payton pops in on her special friends.  This made me laugh thinking about her nosing around (probably trying to steal kibble), so the next time something around the house reminds me of her, I'm going to imagine her visiting me too.

As a symbol of her life, I'm going to make the Pink Flowers for Payton campaign an annual tradition each spring.  In addition to a full vegetable garden and herbs, I will be planting these beauties on Sunday.


I'll leave you with two videos looking back at memories from Payton's remarkable life.

http://www.youtube.com/watch?v=q6i6g1sa0XQ
 
http://www.youtube.com/watch?v=JcbWV7jElE4 

Love,
Christy 

PS.  I hope everyone has a wonderful Easter weekend, enjoying family and friends.

 

Thursday, March 28, 2013

From Pug-a-boo! Pugnacious Keepsakes!

Late spring of last year, I took the plunge into sorting through Payton's stuff.  It was tough, maybe I started too soon.  I became overwhelmed and had to stop and so I still have much to do.  There are so many great photos, memorable things, and thoughtful keepsakes that deserve a prominent display in our home.  I'd like to share some of these treasures with you.  

But not all of these treasures are tangible objects. There was the Remembering Payton Tour.  In 6 or 7 months, we went to Austin, Minneapolis, Milwaukee, Chicago, Indianapolis, Herndon, St. Louis, Vancouver, Seattle, Molalla, San Francisco, New York City, and Toronto.  There are still wonderful pugs and people in other parts of the country that we didn't get to see, but I can't thank each person and each pug we did meet for all the hospitality and kindness.  Traveling, especially often, can be very stressful, but it helped me at a time when I desperately needed to enjoy something.  I will never forget the experiences, the lunches, the special talks in the car, walks in the forest, the personalized welcome and photos, the pink roses, the distance that some traveled to say hi.  So many memories.  All photos from the Tour are on Face Book.

Another intangible item that helped me was joining Face Book and the Pug Sluts group.  I can't tell them enough how much being able to scroll through those posts at anytime saved me.  I needed a distraction from the pain I was feeling and this group delivered.  It helped me to let time pass and not dwell on sadness all day and night.

Through Face Book, it was fate that I met a woman who had lost two pugs to PDE.  I had been thinking about a tattoo and it turns out she is a very talented artist.


It's a simple piece on my right wrist where I can see it all the time.  It has so much meaning for me and even more special to have had it done by someone who has similar scars.

After Payton passed, I was blown away by all of the love sent our way.  Seriously, all of the thoughts, prayers, blog tribute posts, blog comments, texts, emails, cards, donations in Payton's honor, and other gifts were so touching.  Here's a collage of just a few of them.


A friend helped edit and fix a few photos so I could order the pendants/necklaces in the upper right corner.  I've never been one to wear much jewelry but I do put these on quite often.

Of course, we also have Payton's ashes.  They are in a nice wooden box and the lid is a frame for a photo.  I need to put one in there.  I haven't had the courage to look inside yet, but I know that day will come eventually.

Once I have everything properly framed and displayed I promise to send pictures.  I have lots of shadow boxes to fill up with some of Payton's favorite things and wonderful keepsakes.  I tried to thank everyone last year, but if I missed anyone, please accept my apologies.  And thank you again...you each know who you are.  I am lucky that Payton led me to so many great friends.

Love,
Christy

Monday, March 25, 2013

From Pug-a-boo! Remembering Pugnacious P! (part 4)

Probably one of the most enduring photo and the most popular posts were "Deep Thoughts by Payton", so this month wouldn't be complete if I didn't mention a few of my favorites in the series.


The first link goes back to Payton's love of (and all pugs' obsession with) food in a comparison to Hobbits.  I know it's silly, but Payton was with us when we did a marathon of all 3 Lord of the Rings movies, and I thought (had hoped) that she would be around for a crazy weekend of watching all Hobbit AND LoTR movies.  She was always happy to veg out with us. 
http://pugnaciousp.blogspot.com/2011/07/deep-thoughtshobbits-and-pugs.html

The second "Deep Thoughts" post that I adore has a video of Tim and Payton.  She looked forward to him coming home from work every day.  It was so cute to see the way she looked at him.

The last two posts that I wanted to share again aren't "Deep Thoughts", but they do contain important lessons that Payton wanted to share with her pug friends.

Looking back at Pugnacious P over that last few weeks has been nice.  Tears and smiles.  I miss that girl.

Love,
Christy 

Thursday, March 21, 2013

From Pug-a-boo! Happy Birthday angel Payton!


My sweet angel, I hope you are having a good morning in heaven today.  I'm sure all of your friends are celebrating and singing and dancing on this special day.  I am too.  We will be having a feast tonight for dinner, prime rib, in your honor.  I wish you could be here to have some with us.  Maybe you will get to chow down on some juicy meat in heaven.  Enjoy your day, I'm sure there will be quite a party.  You deserve all things that your heart wants, today and every day.  I am thinking about you now and always.  I miss you.  Happy Birthday, Payton!
Love you,
Momma

I am really struggling not being able to hold and kiss my girl today.  Although in the back of my mind, I knew her little body was getting tired, I expected Payton to be with us for her 10th birthday.  We knew there was never a guarantee that we'd have another day, another week, another month, another year, but when she kept beating all the odds...4, 5, 6, 7, 8, 9...why not 10?  I just don't like that she's gone.  I never will, but I try to imagine how much fun she will be having today in such a wondrous place, and I know she feels my love.  I will be savoring the tasty dinner tonight and know that she will be smiling.  I hope each of you can spoil yourself today with a special treat in Payton's honor - something that really makes your eyes bug out of your head and makes you loose all self control - like Payton did at her party last year.


Love,
Christy

Monday, March 18, 2013

From Pug-a-boo! Remembering Pugnacious P! (part 3)

Besides being blessed enough to give Payton the best care possible, I am so thankful that we really took advantage of opportunities to have fun with her.  Some of my favorite memories we shared together were during trips to Chicago.


In the photo(s) above, Payton is posing in front of the Water Tower just off Michigan Ave all bundled in her Pug Snuggly coat, matching Chilly Beanie, and MY matching scarf.  I couldn't decide on which effect I liked best so I included them all!

One of our first happy memories in Chicago, and probably a favorite of my husband's, is when we took her to a dog park for the first time.
http://pugnaciousp.blogspot.com/2011/05/flashback-fridaywiggly-field.html

I think one of our best vacations in Chicago was a blast, and my parents got to join us too making it even more special.  In fact, it was so eventful that there are two posts.

Something else that is very special to me is baking Christmas cookies with my mom.  It was so much fun to share this experience with Payton, and as you can imagine, she enjoyed it too!
http://pugnaciousp.blogspot.com/2011/12/flashback-fridaymaking-christmas.html

It was such a pleasure to share my life with one of the most beautiful spirits I've ever met.

Love,
Christy