How to Help Your Loved One With CMT
Living with a disability, particularly a progressive condition like Charcot Marie Tooth Disease, can present unique challenges that may evolve over time.
Tasks that once felt manageable might become trickier, and new difficulties may emerge at different stages of life.
No matter what obstacles CMT brings, it’s important to remember that others have likely faced similar challenges and found effective methods or strategies to overcome them.
This guide shares practical tips to help your loved one manage CMT so they feel supported, understood, and empowered to live their best life.
Advocate Passionately for Your Loved One
Attend medical appointments with your loved one to ask important questions and gather the information needed to offer both physical and emotional support.
If you encounter responses like “we don’t know” or “there’s nothing you can do”, be sure to consult other specialists, and stay informed about ongoing and upcoming research.
This will equip you and your loved one with valuable insights and solutions.
Understand the Condition
Equip yourself with knowledge about CMT4 disease to better support your loved one and gain a clear understanding of what’s happening in their body.
Patients organizations dedicated to CMT provide valuable resources on the condition, along with expert insights from medical professionals and researchers involved in drug development.
Keeping up with ongoing research can also help you share encouraging and hopeful updates with your loved one.
Buy Them Walking Aids and Orthotics
Orthotics are supportive devices designed to be worn inside your shoes or on your legs to enhance limb strength and functionality or to correct your walking pattern (gait). Various types of orthotics include:
- Shoe insoles
- Ankle or leg braces
- Custom-made shoes that provide ankle support
- Thumb splints to improve hand strength
While it’s rare for someone with CMT to lose the ability to walk entirely, mobility can still be challenging. Occasionally, using a wheelchair can offer a helpful way to rest and conserve energy.
CMT Is More Than a Physical Conditional
In individuals with CMT, the nerves responsible for controlling muscles struggle to transmit signals to and from the brain, leading to various physical challenges as muscles weaken and deteriorate.
Symptoms can range widely, including difficulty with everyday tasks and persistent pain.
As a caregiver, while understanding the physical effect of CMT is essential, it’s just as crucial to acknowledge its emotional toll.
Coping with CMT and its challenges can result in profound depression and uncertainty about the future.
Many individuals may suppress feelings of fear or a sense of “being different”, which might not be immediately obvious.
Establish a Network of Support
Since navigating CMT can be difficult, your loved one needs to have a reliable support network.
Reach out to their friends, family members, spiritual guides, and other trusted individuals who can offer unwavering encouragement and support.
Explore online support groups focused on CMT to deepen your understanding of this genetic condition.
Emotional and Mental Health
People living with CMT encounter numerous challenges every day. Beyond the physical struggles, they may also be vulnerable to mental and emotional difficulties, which could develop into severe issues if ignored.
Take time to connect with your loved one frequently, and kindly encourage them to share their thoughts and emotions.
If they seem reluctant to open up, support them in seeking guidance from qualified therapists or counselors.
Endnote
Supporting a loved one with CMT is a demanding task, but with the right knowledge and reliable support and network, you can play a vital role in helping them preserve their independence and improve their quality of life.
Despite your best efforts, the responsibilities of caregiving can become overwhelming, making professional care an essential resource to meet their long-term needs effectively.
