Research Log #5 - Solutionary Project 2021

Date: Mar 2, 2021

Name: Macie Tsang
Essential Question: How do neuromuscular diseases affect a child and their family’s lives?

Three Points to Prove: #1: Neuromuscular diseases can negatively affect mental health.

#2: Neuromuscular diseases make it difficult to receive/find medical care.

#3: Neuromuscular diseases make it difficult to receive a “normal” education.

Point that this Source Proves: #2

Excerpts (These should provide insight into the Point to Prove):

Elizabeth Vroom, president of Duchenne Parent Project, notes her own son’s experience: “What I see in my son is now
he’s getting older and it all falls apart because you go to separate cardiologists, you go to separate pulmonologists, so
all the things which are developed in care for the younger children don’t exist for the older ones” (Hendriksen 31:19-
31:31).

Pat Furlong, the president of Parent Project Muscular Dystrophy, said, “If I could rule the world, then I would make
sure that everyone has access to optimal care, to the mobility devices and breathing devices that are necessary, and also
to the access of treatments” (Hendriksen 31:45-31:56).

Peter Mikkelsen is 29 years old and lives an independently, but he still needs help and says that “having your own
individual helper is very important. If you really need healthcare and personal care, then it is really important that you
don’t use another person’s helper” (Hendriksen 43:41-43:52).

Peter Gimbel, a 27-year-old with Duchenne, details his experience with helpers: “I have four different assistants right
now. I have one person who just does Tuesday and Thursday evenings after I come home from work, and I have
Brandon who is here today who does the weekends. (Hendriksen 43:55-44:07)

Analysis (How does this source support the Point to Prove?):

This documentary provides statements from professionals and men living with Duchenne about the difficulty
to receive and find medical care for their disorder. In the 1990s, the average life expectancy for a male with Duchenne
muscular dystrophy was 19 years old. The life expectancy has now grown to be 30 years old and older. Since
Duchenne is still thought of as a pediatric disease, medical care and doctors are centered around children. When these
children grow up and become men, the proper medical care is no longer there, and it becomes difficult to find the
correct doctors. Elizabeth Vroom, president of Duchenne Parent Project, notes her own son’s experience: “What I see
in my son is now he’s getting older and it all falls apart because you go to separate cardiologists, you go to separate
pulmonologists, so all the things which are developed in care for the younger children don’t exist for the older ones”
(Hendriksen 31:19-31:31). This
Muscular dystrophies are underfunded in governments worldwide, leading to no cure and limited types of
treatment. Duchenne causes progressive deterioration in muscle tissue, including the heart and lungs. By the age of 14,
most children are in need of wheelchairs because of their weakening muscles, and need respirators near the age of 20
to help them breathe. These necessities are not available to everyone. Pat Furlong, the president of Parent Project
Muscular Dystrophy, said, “If I could rule the world, then I would make sure that everyone has access to optimal care,
to the mobility devices and breathing devices that are necessary, and also to the access of treatments” (Hendriksen
31:45-31:56). This shows the understanding that these pieces of equipment are vital to living with Duchenne but not
everyone has access to them.
Although wheelchairs give a person with Duchenne a sense of independence, at-home, full-time care is still
needed. Peter Mikkelsen is 29 years old and lives an independently, but he still needs help and says that “having your
own individual helper is very important. If you really need healthcare and personal care, then it is really important that
you don’t use another person’s helper” (Hendriksen 43:41-43:52). Mikkelsen is open about the fact that he needs
someone that specifically takes care of him and be around all the time. Finding a person to take care of him can be
quite difficult, especially trying to find one that is not helping anyone else. Peter Gimbel, a 27-year-old with
Duchenne, details his experience with helpers: “I have four different assistants right now. I have one person who just
does Tuesday and Thursday evenings after I come home from work, and I have Brandon who is here today, who does
the weekends” (Hendriksen 43:55-44:07). This proves that even trying to find a single helper is a feat in itself. If more
people were trained to take care of those with muscular dystrophy, then it would not be as hard to find the help that is
needed.

Work Cited (correct MLA format):

Hendriksen, Jos, et al., directors. “Duchenne with a Future: The Power to Live.” YouTube, uploaded by Parent Project
Muscular Dystrophy, 13 November 2014, https://www.youtube.com/watch?v=JWq4THPFBJA.

This is a reputable and reliable documentary because it was published by the Parent Project Muscular Dystrophy
and it would only publish true, medically credible stories.