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 noy 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.
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.
Frustration with 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 so 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, that 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 our hopes remain unmet year after year.
It is Up to You
So, what can you do to live your life with a disease with no cure?
It's your life. Take accountability. Be your own advocate.
I decided it is up to me to find things that work for me to make my life easier. I decided to start pushing out information about my life and experiences 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!
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