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Living with Uncertainty & CMT

When you live with a debilitating condition, there are always unknowns that can make this difficult for you. For sufferers of Charcot-Marie-Tooth disease (CMT) – a rare genetic condition – the severity can be harder to keep track of because it varies from person to person. Emyr Williams, co-writer at CMT Central, has learned first-hand about these unknowns. He has suffered from CMT from childhood, and the disease has impacted his ability to walk and use his hands. For those living with CMT, it can be hard to access information and support to help cope with the condition. “I remember when I was diagnosed at 13 years old, and my parents didn’t know what courses of treatment I needed,” Williams explains. “They had to go from doctor to doctor to figure out what conditions I had and which specialists I should see." When a diagnosis came through, like with many others, the news hit them hard. "That news flattened them. They later told me that it felt like a ton of bricks had been placed directly on their head... For the next weeks and months, they did what most people do when they hear bad news. They lied down and hoped things would get better." The result of this? They started asking about the future of CMT.

The Future of CMT

What does the future of CMT look like? Nobody knows with certainty, but there are some things we can say with confidence. The number of people affected has increased over time – not just the number of diagnoses, but also the number of people living with the disease. As the baby boomers age, CMT will become increasingly prevalent. This will increase research efforts, as is already starting to happen in the United States. There are more scientists at work here than at any other time in our history. They are working on a cure or at least a treatment for the disorder. We hope that they'll find answers to our many questions.

The cost of care is increasing, and that will make it difficult for some people to access necessary care and equipment. We hope that insurance companies will continue to provide coverage for affected patients. The growth of social media is the best evidence that our community is growing and becoming more influential.

Facing the Unknown

When you’re facing the unknown, there are two ways to deal with it. Either you can lie down and hope things get better, or you can do something about it. We’re not here to sugarcoat what you’re facing, but we are here to give you some tools and guidance you may need to succeed. We know everything doesn’t always work out as planned, but we can tell you this: 1. Things are going to change. 2. You may try and fail again and again. 3. And there will be days where you just don’t want do anything – but sometimes you have to force yourself. 4. And then those days will pass. 5. And one day your mind will change, you won’t see obstacles anymore. You’ll see opportunities instead. 6. And your body won’t feel like torture, it will feel like home, because you’re no longer forcing it, accepting it for what it is, not what it isn't.

Deciding to exercise is one of the most important decisions you can decide to act upon as someone with CMT. It is essential to promote mobility, strength, and function. It helps you manage your symptoms, like muscle weakness. It can also delay the progression of your disease. It improves balance and coordination, helps manage symptoms of clumsiness, stiffness and weakness, and can even slow the progression of further damage. If you don't know where to begin, there are tips on this site to help, focusing on stretching, the hands and the legs.

However, exercise can be hard to do if you are living with a physical disability. This is why it's important to find practical exercises that work well for you. For example, stationary cycling is a good option if you have trouble balancing or if weight-bearing exercises are too painful. Similarly, exercises that don't require balance or gripping are ideal if you have weak hands or legs. A physical therapist can help you develop an exercise plan that works for you, so be sure to ask your caregiver about them.

Face the future with a fighting spirit - seize it and shape it as much as you can because the future is unknown.

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