Living with a disability can be difficult, particularly a long-term condition like Charcot Marie Tooth Disease, which may change over time. You may find that at different times in your life you face different problems or you may find that a task you have been dealing with perfectly well for years becomes more awkward.
However CMT affects you, somebody has probably dealt with that particular problem before and there is invariably an answer, technique, or method for tackling it so that you can live life to the full. It may take time to find the right solution for you, but do ask.
Remember, you are not alone and there are people who can offer support when you need it. Apart from your friends and family, many people with CMT are willing to share their experiences and methods of overcoming the difficulties you may face. As well as Charcot-Marie-Tooth UK, there are a number of other useful voluntary organisations, not forgetting healthcare professionals.
What you can do
Taking care of your health and exercising appropriately is important, particularly if you have CMT. See Exercise & General Health Tips for some general guidance, along with specifics about balance, the risk of falls and care of your feet. The symptoms and effects of CMT do vary, but for general guidance on some common issues see Balance Fatigue, Pain and Breathing Issues. We also discuss the potential effects of CMT on Mental Health. You are the person who best knows how your CMT affects you on a day-to-day basis, and it is important to take responsibility as far as you can. That said, health professionals such as doctors, physiotherapists and podiatrists, are there to offer specialised advice and support on issues like occupational therapy, treatments and drugs. There are a number of aids to daily living that you may find helpful. See our Directory of Links for a selection, including orthotics and there is also information on ‘everything else’: benefits, work, disability rights, etc.
Lastly, a social life is important and peer support can be very empowering. CMTUK Members have access to local and lively social media groups. Remember that getting the right information about CMT is important, helping you to make informed decisions for yourself. You understand how symptoms affect you, both mentally and physically, which makes you the best person to keep tabs on any changes in your condition.
- You can use your personal understanding to:
- feel more confident and in control of your life
- manage your condition and its treatment in partnership with healthcare professionals
- help prevent further complications
- communicate effectively with professionals
- become more realistic about the impact of your disease on you and your family
- lead a fuller life.
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