They Said There Was No Cure.
I Keep Looking Anyway.
by Frank Hanley
The doctor told me “It won’t kill you and there’s no cure.”
And she was right. Now, it’s thirty years later. It has not killed me (*yet), and there is still no cure or treatment.
At that time, there was very little information available and I did not know what questions to ask. Resources to find information were limited, the internet did not exist. It would have been good to know that each of my children had a 50-50 chance to inherit the disease.. and that it is degenerative, it will get worse as I get older.
*yet – stay tuned for more on this
FSHD Muscular Dystrophy
I struggle with FSHD. Facioscapulohumeral muscular dystrophy (FSHD) is a specific type of muscular dystrophy. It is a rare, degenerative muscle disease, a genetic mutation that can be passed from generation to generation. FSHD causes progressive muscle loss and weakness. It affects one-in-8000 people. The symptoms can be mild or severe. There currently is no cure or approved therapies for the treatment of FSHD.
Living with a rare disease is Frustrating
"I joke that I wrestle with a bag of groceries and the groceries usually win."
Daily Challenges
Living with FSHD presents daily challenges to tasks that most people take for granted. Some daily tasks often require significant planning and effort. Walking is tiring, climbing stairs is my latest challenge. I wear a leg brace to prevent falls. Lifting objects (like a bag of groceries) is a challenge as the muscles in the shoulders, upper arms and core are weak. Facial muscles are impacted, making it hard to close your eyes and for some, to even smile. We can’t leave out the constant mental adjustments needed to find alternative ways to accomplish simple daily tasks like washing your hair or reaching a cup on a shelf. I lose my balance for no apparent reason, and I am 'that person" who takes the elevator to go one floor.
Providers
How many times have you seen a medical provider who has no clue about your disease? Maybe they could have prepared? Maybe they could have spent a couple of minutes doing a little research? It is upsetting to see a provider who obviously does not care or want to learn about your condition.
Anyone with a rare disease is certainly familiar with this scenario… you wait months for an appointment to see a provider and then find that the provider has absolutely no clue about your condition. I've met many along the way. At least some of them were honest with me and admitted it.
A Cure, Treatment, Breakthrough
It seems to me that the patient advocacy organizations, at least the ones I follow, present themselves as champions. They fund projects and work toward cures and treatments but fall short when they cannot deliver as promised, For many of us, it looks and feels like the proverbial donkey with a carrot dangled just out of reach. The carrot — a cure, treatment, an advancement — always seems to remain on the horizon. Their announcements and events provide a glimmer of hope, only to leave us frustrated and disappointed when they don't deliver year after year.
What You Can Do
I decided it is up to me to look and find things that work for me to make my life easier. I decided to start pushing out information about my life and the experiences of living with a rare disease.
Here are some suggestions on what you can do to help your own situation:
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Join or start a support group. Reach out and find others who suffer with the same or similar problems as you. Develop a network of individuals that you can talk to and talk problems through and share wins.
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Find providers that can help your cause. Try to find local providers and remote providers that can help. A chiropractor, acupuncture, massage, Nutritionist, whatever you need. Find ones that provide natural treatment.
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Continue to find workarounds and “cheats”. Adapt and find new ways to do things. Eliminate, stop doing things that you simply can't do any longer, or are a major struggle. Have/Hire someone else to do them for you if possible.
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Practice Mindfulness. Be constantly aware of your surroundings. Especially when walking, standing or moving around the house. You are most vulnerable when you are in a familiar environment, comfortable/feeling safe and not paying attention to your movements.
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Maintain a positive mental attitude all the time. It's not what you can't do, it's what you CAN do.
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Find a low/no impact exercise program that you can perform and that you enjoy doing. If nothing else, start with a simple breathing practice. There are a lot of breathing exercises that you can perform that will help you. Even if it's just a breathing practice… good breathing exercising your organs. Build from there!
It is Up to You
What can you do to live your life fully with a disease with no treatments or cure?
It's your life. Take accountability. Be your own advocate.
So knowing all this is one thing but actually doing this is another. There is a lot to consider and getting started might be difficult.
But don't worry I'm here to help.
I'm Frank, and I have been where you are.
I understand the struggles of having a rare disease or physical challenge. I have been struggling most of my adult life.
And that’s why I started this business. I am using my unique position as a patient and instructor to create a place to bring people together into a supportive environment. Through my LIVE and online seminars and workshops, I have supported countless people within the disabilities community.
Benefits You Can Expect
I focus on ability rather than disability.
Enhance
Enhance Physical Health and Function
safely and effectively improve your physical capabilities
Boost
Boost Mental & Emotional Well-being
boost to your emotional resilience and overall outlook on life
Expand
Expand Social and Functional Horizons
inclusive and empowering, fostering a sense of community
With the right support and a tailored approach, you can experience the transformative power of movement and live a healthier, more fulfilling life.
Testimonials
"Inspiring and Impactful"
""His dedication to helping others with FSHD (muscular dystrophy) fight back against their daily struggles is evident in the carefully designed exercises he shares.
June
Massachusetts
"I am so appreciative"
"Frank has a great knack for identifying the need for different learning styles. This is extremely important when working with individuals with a chronic, debilitating, progressive muscle wasting disease."
Ranae
Washington
"Stronger than when I started"
" I am challenged both physically and mentally in performing the strength training. I feel much stronger and confident than I did when I started.
Susan
North Carolina
Here's How It Works
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Step 1: Schedule your Meeting
We will do a quick assessment and discuss you goals.
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Step 2: Building your plan
I will build a personalized wellness plan.
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Step 3: You take control
Take control of your life. Be accountable to yourself.
Here's what you get ...
© 2025 Frank Hanley email [email protected]