(BPT) – Caregivers come in many forms — full-time, part-time, family, friends and professionals. Many people will be a caregiver at some point in their lives, and a recent report by the National Alliance for Caregiving and the AARP showed that more than 43.5 million adults, or about 18 percent of the U.S. adult population surveyed, provide care for a chronically ill, disabled, or aged family member or friend during any given year and spend an average of 24 hours per week doing so.
Being a caregiver of any kind takes a tremendous amount of time, energy and caring. It can be extremely stressful, as so much of your energy is spent promoting the health and well-being of another. While rewarding in many ways, it can take a toll both physically, financially and emotionally.
Now imagine you’re a caregiver for someone with a progressive and fatal genetic disorder — and that someone is a child. That’s the everyday reality of people providing care for children and young adults with Duchenne muscular dystrophy, a severe form of muscular dystrophy in children.
Duchenne affects mainly boys and young men, with an incidence of about one in 5,000 live male births. The disease is marked by progressive muscle weakening and wasting, leading ultimately to the inability to walk by the teen years or earlier, and severe respiratory and cardiac complications. Sadly, life expectancy is generally between the late teens and early twenties.
Those caring for boys with Duchenne — many times a parent — must address the unique challenges the disease presents, including going to a host of doctor and physical therapy appointments, making changes to the home and cars and vans to accommodate changes in mobility and using assistive technologies like wheelchairs, standers and shower equipment.
Mandy Lowe knows these challenges all too well. Eighteen years ago, her son Alex was diagnosed with Duchenne at only 2-and-a-half years old. At the time, none of her local doctors knew anything about Duchenne, and patients weren’t expected to live much beyond their teens. She suddenly had a whole new and scary world to navigate.
Then Mandy heard about Parent Project Muscular Dystrophy (PPMD) — a nonprofit group whose mission is to end Duchenne — and was connected with other members of the Duchenne community who helped her learn how to manage her new role as a caregiver.
Today, Alex is 20 and doing well — even taking college classes — and Mandy volunteers with PPMD to provide caregiving advice and support for other families who have a child with Duchenne and give back to the community that has supported her.
“Duchenne is a devastating disease, and the strength that caregivers like Mandy demonstrate while dealing with the diagnosis and what follows is truly remarkable,” said Rick Munschauer, MD, Chief Medical Officer for Marathon Pharmaceuticals, a biopharmaceutical company that develops treatments for rare diseases. “If you are a caregiver or know someone who is, it can be a big help to take advantage of resources available within the community and to connect with those facing a similar situation.”
The Caregiver Action Network offers these tips for family caregivers:
1. “Seek support from other caregivers. You are not alone.”
2. “Take care of your own health so you can be strong enough to take care of your loved one.”
3. “Accept offers of help and suggest specific things people can do to help you.”
4. “Learn how to communicate effectively with doctors.”
5. “Caregiving is hard work, so take respite breaks”
6. “Watch out for signs of depression, and don’t delay getting professional help when you need it.”
7. “Be open to new technologies that can help you care for your loved one.”
8. “Organize medical information so it’s up to date and easy to find.”
9. “Make sure legal documents are in order.”
10. “Give yourself credit for doing the best you can in one of the toughest jobs there is.”
For additional information on Duchenne, or to connect with other caregivers and families living with Duchenne, visit www.parentprojectmd.org.
