A mother and daughter’s journey…
An interview with Bri Lafferty on Advocacy for Myoclonus Dystonia: Being resilient in an unrelenting world & her mom Jill Lafferty: 22 years as a Wingman for my Zebra Daughter on December 9, 2023 by George Ackerman, Ph.D, J.D.
Bri Lafferty (Daughter), Biography
Starting into puberty, which is hard enough, I also started experiencing symptoms of a rare illness that would be undiagnosed and misdiagnosed for 8 years. After finally getting a diagnosis at 18 of Myoclonus Dystonia, the doctors still didn’t know how to help me so I was left with damaging advice to self-medicate with alcohol for another 13 years where I was finally approved for Deep Brain Stimulation surgery changing the trajectory of the rest of my life.
Can you tell me more about your Advocacy?
I now have a business helping people with death, dying, the afterlife, and chronic illness. I am a Death & Spiritual Doula.
What is your passion and how did you get involved in Dystonia and Parkinson’s awareness and hope for a cure?
Parkinsons and dystonia are closely related, and I ended up with a deep brain stimulator that was originally designed for Parkinson’s patients. I want more people to be able to have access to this life changing and lifesaving treatment option omitting a lot of necessity for pharmaceuticals and alcohol.
What type of goals do individuals with Dystonia and Parkinson’s have when working with you?
Finding alternative ways of coping and healing from their condition as well as clarity on why we have the condition to begin with and what happens if the illness takes our life.
What type of training and how long are the programs?
I have a few smaller online courses that can easily be done in a day to get into the right mindset. I have larger coaching offerings that can last months.
What effect can it have on an individual with Dystonia and Parkinson’s?
I healed from Myoclonus Dystonia through meditation, and I have seen others who have healed their Parkinsons through the same or similar practices.
What would you like to see as a future goal for your programs?
I would love to save the world, and in my mind, saving even one person is the world. “You are not a drop in the ocean, you are the ocean in a drop” – Rumi
What events do you participate in?
I give many presentations in many different settings.
How does this also assist the caregivers?
My mom and I co-authored a book about our journey with Myoclonus Dystonia which includes her side of things as both an advocate and a caretaker. I bring this up in my presentations with the impact an illness can have on a caretaker and how they too can become ill through the stress of it all.
How can someone get in touch? What is your website?
www.bri0nicllc.com (the 0 is a zero) I can also be reached by email bri0nicllc@gmail.com
How can others also become advocates for awareness?
I think the more voices that speak up and speak out can help raise awareness. This can be done through social media, local groups and presentations, reaching out to doctors and med students.
In your opinion what is the key to effective advocacy?
Keeping it pretty factual, experienced-based. While some emotion is good and it speaks to people, being overly emotional can cause people to not hear the message.
How can we better fundraise to support a cure for Dystonia and Parkinson’s?
There are so many fundraisers and awareness programs for cancer and diabetes, you have to find a way and a message that cuts through the noise of the big advocacy programs already in place.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I cook 98% of the food I eat, I meditate daily, I exercise almost daily, I take Epsom Salt baths regularly, and remember my grateful heart.
Why should people who don’t have Dystonia and Parkinson’s care about this?
I like to think people should care about other people even if they’re not directly affected.
Have you had any family members or relatives affected by Dystonia and Parkinson’s?
I have an aunt suffering with late stage Parkinsons and I suffered with Myoclonus Dystonia for 22 years which has similar symptoms.
If you had one song that would tell us more about you or represent your life, which song would it be?
Sound of Silence by Disturbed.
If you had one final statement or quote you could leave for the Dystonia and Parkinson’s community, what would it be?
There’s always a brighter future, whether it’s meant to be found in this life or the next.
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Mom…… Jill Lafferty, Biography
I was raised in a family of doctors and scientists with an attitude of having a proper and healthy mindset, with a healthy diet and exercise program and a curious nature. My family was adventurous: flying, sailing, skiing, rafting, hiking, building things, exploring remote areas and reading for knowledge. I am married to my sweet husband of 33 years and we have two daughters, Brianna 32 with Myoclonus Dystonia and her sister Tara 30, with MCAS, POTS, and EDS, also known as the Trifecta. All four of us have college degrees. Husband in Construction Management, I have a BA degree in Science, Bri has a Business and Marketing degree and Tara has a Master’s in Health Psychology.
Can you tell me more about your advocacy?
I am currently in the process of interviewing parents of children with suspected, or diagnosed, types of dystonia’s and how we can better advocate for our loved ones. My daughter Bri and I published our book this year, Wired to be Dysfunctional, sharing our 22 year journey with Myoclonus Dystonia and her very successful Deep Brain Stimulation surgery in February 2022.
What is your passion and how did you get involved in Dystonia and Parkinson’s awareness and hope for a cure?
My passion is helping caregivers find their voice in advocating for their loved ones with dystonia. I also am passionate about bridging the wide gap between patients and their specialists. A meme that I love and am using in trying to bridge this gap is: “Doctor to Patient: Don’t confuse your Google search with my degree. Patient to Doctor: Please don’t confuse your degree with my twenty years of living with this disorder.” Somehow, we need to be better at working together. It seems that there is a lot of interference now days between a patient and their specialist. I am also finding that it is still taking upwards of a decade to get a proper diagnosis and I find that this is totally unacceptable, especially with the technology that we have for finding and sharing information, as patients, caregivers and those in the medical community.
What type of goals do individuals with Parkinson’s have when working with you? I respond to posts on Facebook support groups and offer what we have experienced, what they might expect to experience on the journey, links to information, great books on the disorder, new research, how to create a journal to follow information, how to advocate for themselves or their loved ones and support when needed. I offer my phone number and email contact information with the invitation to call day or night. I have been there, and I don’t want them to feel alone.
What effect can it have on an individual with Dystonia and Parkinson’s?
I would like to form a group, a liaison between patients, caregivers and specialists like neurologists, psychiatrist, psychologist, and movement disorder specialist, along with PT and OT and other support personnel.
What would you like to see as a future goal for your advocacy?
I would like to see proper diagnosing much sooner with effective treatments instituted quickly. I would like to see a partnership between patient, caregiver, and specialists and their support personnel. I would also like to see insurance companies step in to offer advocates for these rare disorders that are very difficult to navigate, both physically, emotionally, and financially.
What events do you participate in?
My daughter and I give presentations on Myoclonus Dystonia and our book and how our journey has unfolded. I also participate in various support groups on Facebook. We also donate to the DMRF (Dystonia Medical Research Foundation) although her particular dystonia is so rare that they do not fund research for it at this time, is our understanding. My daughter has also been sharing her story on various podcasts.
How does this also assist the caregivers?
I think as caregivers, we have the tendency to neglect to take care of ourselves and with other children in the family, sometimes their needs are lost in the chaos of trying to comfort the one who is experiencing unrelenting symptoms and maybe doesn’t have a clear diagnosis or proper and effective treatment that alleviates their symptoms. Also, the financial burden can become overwhelming. I also try to share that the kids with dystonia, a lot of times will start to isolate themselves from their friends and peers and they become very lonely. I try to share what has worked for us and what hasn’t had much of an impact. I lend a supportive ear with 22 years of knowledge both experiential and through researching this disorder along with talking with others about their journeys.
How can someone get in touch? What is your website?
email: heavenlyhavens@msn.com
How can others also become advocates for awareness?
This is what I am starting to investigate in the hopes of becoming a member of a group already formed, or if need be, to form a group for the purpose of advocating for awareness.
In your opinion what is the key to effective advocacy?
I think educating yourself about every aspect of the disorder, and then respectfully engaging with your specialists about your concerns and ideas for treatment plans and working as a team to find effective and safe solutions. Finding specialists who want to work in tandem with the patient and their advocate.
How can we better fundraise to support a cure for Dystonia and Parkinson’s?
I find that the “Walk for the Cure” is difficult in small towns like where we live. It seems that it is kind of an old strategy along with dinners for fund raising. I am still trying to find newer ways to fundraise. I know that people sell t-shirts and bracelets, however, we have never had anyone ask us about our Dystonia Awareness t-shirts or bracelets. The t-shirt and bracelet avenue are overwhelmed now with all of the various disorders. In fact, the stickers for cars for a disorder is now overwhelming too, there are so many disorders wanting recognition, funding, and support. We are still trying to get DMRF to fund research for Myoclonus Dystonia.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Well, now that you have asked, early on we tried hypnotherapy, mindfulness meditation, chiropractic, massage, acupuncture, Chinese herbs, physical therapy all to no avail. However, Myoclonus Dystonia is difficult in that their brains are wired for excitement, non-stop. Our DBS movement disorder specialist shared how their brains are very different and “wired to be dysfunctional.” Hence the name of our book. Once my daughter had the successful DBS surgery, her brain quieted down dramatically. She was able to explore mediation techniques again. She recently attended a Dr. Joe Dispenza 7-day Advanced Retreat where he shares his meditation techniques with upwards of 2,000-8,000 people in attendance. The 7 days are hours and hours of practicing the meditations and being in coherence with others on their healing journey. On day 2, she turned off her neurostimulator and it has been off for over 5 months now using daily meditations and she has had no symptoms or medications. Prior to DBS, she had tried various cocktails of medications without relief. Just a few months prior to her surgery, she had an emergency programming session of 90 minutes because her symptoms were returning. Her neurologist programmed for another opening in her lead for a 5th port to add more neurostimulation and just 3 months later, she turned her neurostimulator unit off using the alternative therapy of meditation.
Why should people who don’t have Dystonia and Parkinson’s care about this?
Everyone can benefit from a healthy mindset and alternative approaches to health. There is much exploration to be done in this “new” and exciting realm of Energy Medicine.
Have you had any family members or relatives affected by Dystonia or Parkinson’s disease?
My uncle had Parkinson’s. My daughter has Myoclonus Dystonia.
If you had one song that would tell us more about you or represent your life, which song would it be?
Rachel Platten”s Fight Song.
If you had one final statement or quote you could leave for the Dystonia and Parkinson’s community, what would it be?
“Truth is stranger than fiction, but it is because Fiction is obligated to stick to possibilities; Truth isn’t.”- Mark Twain. I love this quote because through our crazy 22 year journey of ups and downs and everything in between with the very rare disorder of Myoclonus Dystonia (including the fantastical aspects,) I now know that there are things that just seem too good to be true, but until you explore the unfamiliar concepts, you might not find your answers. We fought hard for 20 years to have my daughter’s Deep Brain Stimulation surgery and a short 17 months later, she discovered that through meditation, she could again reach the space that she experienced during her near-death experience in 2017, to tap into its healing energies. Be curious, ask questions, explore, and never stop reaching for the “unattainable.”