Nemaline Myopathy Support Group

Resources

Starting out with NM

Keeping Notes

One suggestion that is helpful for all parents of special needs children is for them to assemble a loose-leaf folder on their child. You can put dividers in it for subjects such as Doctors, Therapies, Exercises, Contacts, the local children's agencies in your area etc. You can keep the latest doctors reports, information on NM (that you can get from this website and NM Facebook groups) etc. This folder will come in handy when you make a visit to the paediatrician who may never have heard of, or met a patient with NM and to the various specialists, agencies and multitudes of therapists who want a synopsis of your child's health history etc.

Forming Partnerships

One of the most important challenges of parents of children with complex medical needs is the selection of their child's team of caregivers. Some parents coordinate, manage, and recruit each member of their child's team of caregivers. These caregivers can include a variety of people. Most teams include medical providers like primary care doctors and specialist doctors. Other members might be counselors, baby-sitters, grandparents, friends, and neighbors. While parents look for caregivers that are highly skilled and accessible, they also search for someone with whom they feel the greatest level of comfortable communication. They look for caregivers they can ask any question and to whom they can communicate their needs without embarrassment. Families seek providers that are comfortable learning as well as teaching. They look for providers with whom they can form partnerships.
With so many different knowledge bases and sometimes priorities, members of the team may raise conflicting concerns and recommendations. The family then learns how to weigh all the information to finally choose what works best for them. One strategy that has worked for many families includes teaming up with other local families. Aside from the benefits of sharing support, these partnerships can help identify areas of concern, encouraging additional resources and expertise within the community. Certainly, no one knows a child better than his/her parents. While doctors and other caregivers may have condition-specific information, only parents can determine if and how that information relates to their child. Over time, many families become true experts on their child's diagnosis. Many families take this opportunity to teach their providers what they know. In this way, they become advocates not only for their child, but also for other children. Strategies for before, during, and after an appointment are outlined below (edited from April Linette Leaman's ideas presented on-line at the EDNF web site).

Starting Out

1. Establish a team of doctors:

  • pediatrician
  • neurologist
  • orthopaedic specialist
  • pulmonologist
  • gastrologist (GI)
  • nutritionist
  • cardiac specialist
  • surgeon

2. Establish team of therapist:

  • occupational
  • physical
  • feeding
  • speech
  • manual (chiropractic type of treatment)
3. Register with Muscular Dystrophy Association

4. Register with Early Intervention

5. Keep a medical journal with copies of all doctor reports etc.

6. Register with division of developmental disabilities (DDS) this division falls under department of human services.

 

Download guide to Respiratory Care for Neuromuscular Disorders
An excellent paper in laymans terms, written by Muscular Dystrophy Canada.

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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