Board Chair Letter April 2018

Doctor Fatigue

Board Chair Letter April 2018 – Doctor Fatigue

One thing that I think people don’t understand about the parents of PMD Children and all special needs children for that matter, is that we are Tired. Dog tired.

This goes for all caregivers really from caring for children with special needs to aging parents and everything in between.

Being a caregiver is draining.

Physically, mentally and emotionally. It can be a real struggle to find 5 minutes for yourself and then, of course, you feel guilty for taking a break and doing something for yourself when there is still so much to be done.

There is another form of fatigue that we face as PMD parents. Doctor Fatigue.

It is exhausting and overwhelming keeping up with Dr. appointments, follow-ups, doing everything they recommend. This goes for therapy and therapists as well. Try this, do that, see if this works, you need to do more… As I write this I am preparing to take my son Jaden on a 6-hour trek this week to Children’s Hospital of Philadelphia’s Leukodystrophy Center of Excellence. He will be examined by a team of specialists to come up with a long-term care plan. We will also get a second opinion on his scoliosis and hips from the orthopedic surgeon there.

With this visit, we hope to gain a better perspective on the future. We will also likely gain the information we need to make some hard decisions in the near future. At the end of the visit there will be more doctor appointments, more follow up etc…  

I write about this today to let our PMD Community know that The PMD Foundation understands.

We know the battles you are facing.

We know how tired you are.

We know you feel like you can’t take one more thing. However, The PMD Foundation needs you now more than ever. We are continuing to work towards the development of our PMD Patient Registry and Natural History study. Your participation is critical to our success.

We will need you to share your child’s information to help us build these databases. We have been hard at work building the structure for our patient registry and Natural History. When we are ready, we will reach out to the PMD community and ask you to participate.

You will be exhausted, tired and too busy. We will still need you.

We will need you to dig deep and help. We will only be successful in bringing potential treatments to a clinical trial for FDA approval with the support of our PMD families.

1 Response

  1. Mary Kingston

    My adopted son – Justin – has PMD. He is now 49 years old. Altho he has many challenges and disabilities, he is the light of our lives and finds joy every day of his life. He was initially diagnosed with cerebral palsy- and it was not until his birth mother contacted us that we found out what his diagnosis truly was. (he has a half brother who – do the state he was raised in – has not had the opportunities that Justin has and the contrast between the two brothers is striking.) Altho his life is circumscribed, he is active, involved and happy. He has 3 adopted siblings, was schooled here by our public school system until he was 21. He now attends a day program for adults with severe disabilities and enjoys being there with his friends. Fortunately our community joins with 3 other local suburbs to form a recreational program for adults with disabilities including such activities as a bowling league, movies and munchies, baseball games, dances, etc. He goes to “work” (a day activity program in which he has a real job delivering mail throughout the facilities) Mondays through Fridays, comes back home at night and genuinely enjoys his life and his friends and family. We have all grown from our experiences and love our relationship.

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