Lennu - Finland's First Dog

Almost overnight, Finland's first dog Lennu has become an internet sensation.

Kelly Weill a reporter at the Daily Best posted photos of the five-year-old Boston terrier on Twitter on Tuesday. So far, she has more than 132,000 like and nearly 46,000 re-tweets.

excuse me but are you aware of Lennu, the Finnish president's dog pic.twitter.com/sBVSOiExw6

— Kelly Weill (@KELLYWEILL) February 22, 2017

A quick scroll through various social media feeds confirms that President Niinistö is a dog lover after our own hearts.

Savanah the Wonder Dog

Editor's Note: Author Heather Field Ruggiero, RN, BSN, worked as a nurse, facilitating patient care for a comprehensive medical clinic. She currently coordinates and facilitates Facebook groups for Rare New England. 

Though investigations are ongoing, the current line of thinking is that along with a slew of other diagnosis' I have PNKD (Paroxysmal non kinesigenic dyskinesia).  I was paired with my service dog, Savanah 6 years ago (the beginning of the month). She is a hearing dog who started picking up on episodes I was having and did not know what they were only a few months after being paired.

I am a single mother of a special needs daughter, as well. I got her to alert me to sounds my daughter makes that I can't always hear. She has been a life changer for our family. Because she was picking up these episodes and sometimes it stressed her out, we made the decision to mold those alerts into a task and response for ours and her sanity. And that has been a massive help to our family. It was not till this past year I had a doctor I trusted with the abnormal movements I was experiencing because of horrible treatments I had received in Emergency departments several times, throughout my life. I was afraid to disclose what was happening even to him, but he was witnessing my declining health and an episode. He was one on only a handful of incredible doctors I have had in my life and I will be forever grateful for him. I have a few rare disease diagnosis' and the funding for future research and treatments is not just necessary it is often a matter of life and death for patients. So I want to do what little I can. This is my Savanah, my heart dog.

Make a donation in Heather & Savannah's honor in the Virtual Walk.

Happy President's Day - Meet Truman and Coolidge

Editor's Note:  Guest blogger, Janet Hieshetter has served as DMRF Executive Director since 2004. She has over 25 years of experience in non-profit, disease organization management.  She has also been invited to join the National Advisory Neurological Disorders and Stroke Council, the advisory organization to the NINDS, and chairs the American Brain Coalition.

Several years ago while attending a DMRF scientific workshop and after a productive day of discussing the direction of dystonia research, I had the pleasure of dining with the Foundation’s Scientific Director, Dr. Mahlon DeLong and several other researchers. The topic of dogs came up – the funny things they do, what kind of mischief they get into, and what they mean to us. The conversation went on for thirty minutes or so and one of the researchers at the table was silent and looked bored. He didn’t have a dog. Later he mentioned to me that he was surprised by the table talk – really – people talk about their dogs like that? He was polite but I could tell thought the dog talk might have been a bit much.

About a year ago I got a call from this same researcher. After heartfelt begging from his youngest daughter – his family got a dog. He called to tell me that he now understood why we had gone on and on about our dogs! He then went on to share a couple of stories about his dog with me. I guess the point is – people who don’t have dogs have a hard time understanding how those of us who do feel about our canine companions.

I have always had a dog in my life – they are part of my family. We currently have two dogs. Truman who is 14 and Coolidge who is 11. They are both yellow labs and are both nutty, wonderful, loving characters. They have comforted us when we were devastated by the loss of a loved one, snuggled when we have been under the weather or just had a lousy day, helped my kids learn how to care for others and learn responsibility, and they have helped us celebrate good times like a Cubs World Series victory.

People ask us now that we are empty nesters and when our current dogs leave us, would we get another dog. My answer is confirmed every time I walk in the door and am greeted by the enthusiastic tail wagging pups who are so glad to see me – Absolutely – can’t imagine life without a dog in our house and in my life. They are work, certainly, but the love and companionship they give back is the best bargain on Earth.

You can donate to support Truman and Coolidge online here.

February is Going to the Dogs

The DMRF is more than a non-profit organization intent on curing dystonia; the DMRF represents a community of people who understand and welcome one another. The strength of the DMRF is rooted in the dedicated volunteers who contribute their time and energy to building a brighter future for those touched by dystonia and creating opportunities to bring the community together.

The DMRF Dogs for Dystonia campaign is part of a nationwide effort to educate the public about the difficulties faced by those with dystonia as well as the important role that dogs play in many of our lives. Throughout the month of February, dog lovers are invited to join this fun campaign to raise dystonia awareness and funds for urgently-needed research.

If you have dystonia, or care about some with the disorder, you can help us continue to do the important work that we do. Two ways to support the campaign:

1 - Register for $15.  All participating dogs will be featured on our web site and have the opportunity to raise money as part of our Virtual Team.   Register online and meet the 2017 Virtual Team!

2 - Order a T-Shirt for $20.  These new shirts feature the Edith Wharton quote about dogs being a 'heartbeat at our feet' and are only available to order from February 14-28.  These shirts will be shipped in early March.

Minnie: Helping to Untwist My Life

Editor's Note: Guest blogger Erin Marshall was diagnosed with generalized dystonia. Dystonia is referred to as generalized when it affects the limbs, trunk, and mother major body areas simultaneously. Click here to support her fundraising efforts. 

I picked Minnie up from a local rescue when she was 7 weeks old. I walked in to see her sitting patiently, and I immediately knew she was the pup for me. That was a little over a year ago.

Dystonia has twisted my life around (quite literally) for about two years now. Minnie makes living with generalized dystonia a little easier for me. She applies deep pressure on my legs when they are in excessive pain, alerts to when I am about to have a dystonic episode, and keeps me safe during them.

She does a lot of tasks to help me, but we need your help in order for the DMRF to work to find a cure so that many people affected by this disorder have the chance to live a life with fewer obstacles in it. Please consider donating to the Dogs4Dystonia Virtual Dog Walk to help make this happen.

Doing Better

Editor's Note: Jessica Feeley has been on staff at the DMRF since 1998. She is the editor of the Dystonia Dialogue magazine and moderator of many of the DMRF online forums.

It’s a joke, but not, that in moments when I feel like I need to be a better person, I aspire to be more like my dog.

As far as I can tell, these seem to be Cici’s rules for life:

• Be enthusiastic about pretty much everything (especially cheese).
• Greet people with joy.
• Be brave even when it’s clear you are nervous.
• Kiss a lot.
• Don’t be afraid to eat weird things. Or, what the heck, roll around in them.
• Don’t irritate the cats.

I often find myself considering these nuggets of dog wisdom in reaction to the extraordinary humans I am in contact with every day.

I have been on staff with the Dystonia Medical Research Foundation (DMRF) since 1998. Like most people, I did not know what the word dystonia meant until I had a reason to learn it. Fortunately, my reason was a job, not a diagnosis. I learned quickly that dystonia teaches hard lessons. The rules dystonia imposes are unfair. The consequences can be physically, medically, emotionally, socially, financially, and spiritually devastating. Early on, I would meet people and talk to them and hear their stories and think to myself, I don’t know how you do it. I don’t know how you live with this disorder. The remarkable people I have been privileged to meet over the course of my time with the DMRF taught me how. It’s a life lesson I have taken to heart. How do you do it? You just do. It’s that simple. It’s that hard. And those who are diagnosed with dystonia, or have a loved one who is affected, do it every single day. That’s why the work of the DMRF is so important. No one should have to endure dystonia alone.

The Virtual Dog Walk brings together two things that mean a lot to me. I love my silly brown dog. She makes me smile. She makes me feel good about myself. And I feel fortunate to be a part of the DMRF. My job reminds me to take nothing for granted. It humbles me. The innate dignity of the human experience is not loud or conspicuous. It is the quiet, spectacular power that propels us from one year, one day, one minute to the next, even when we’re not sure how or if we will make it there. Many of you reading this blog have taught me this, probably without realizing it, so thank you.

Cici is collecting donations to support medical research toward a cure for dystonia and programs that support and educate patients and families. Please give what you can: www.dystonia-foundation.org/cici. Thank you for your support!

Blue to the Rescue

Editor's Note: Guest Blogger Lisa Troub was diagnosed with Rapid-Onset Dystonia Parkinsonism (RDP) in 2013. She considers herself lucky to have two great guys in her life, happily married and canine mom to Blueberry.

I adopted Blueberry in January 2015 from the Arizona Humane Society. We had an instant connection, and the rest is history!

Blueberry comforts me all the time especially when I am too fatigued, and we will nap together. He tends to look back at me on our walks as if he is checking on how I am.

Blueberry has a great sense of humor: whether he has the zoomies or needs belly rubs, he keeps me laughing. He loves car rides, and being my co-pilot. She shared "Six Things My Dog Has Taught Me" on her Little Writings blog.

Please help Blueberry and Lisa find a cure for Dystonia by donating to the Dystonia Medical Research Foundation’s Dogs4Dystonia Virtual Dog Walk!