Most are Adults

Most of the more than 17 million people in the world living with Cerebral Palsy (CP) are adults. However, research focuses largely on children. Changing this narrative is the perfect reason for all to join My Cerebral Palsy. Lending your voice to lifespan research will help balance the scale and provide answers! By joining, you will:

  • participate in studies and forums.
  • be educated and no longer willing to accept “because you have CP” as the answer.

As with everyone, aging decreases our flexibility. The difference is that because muscle tightness is a major CP characteristic, we get a double dose. Because of that, there’s an impact on our GFMCS score which makes the changes harder to take.

Sharing your experiences will enlighten medical professionals. Letting them know that CP requires maintenance treatment to enable 17 million plus (and growing) persons to continue living their best lives.

Most of the 17 million living with CP are adults.
17 million worldwide living with cerebral palsy

Discovery for “high functioning” adults

C-spinal stenosis
Dr. Joseph Dutkowsky with an adult patient

Some c-spinal stenosis symptoms are pain/weakness in arms, shoulders or legs, muscle mass loss, jaw pain, droopy eyelids and balance issues

In November of 2016, there was radiating pain down my arm.  My primary care physician was not available.  Therefore, the appointment was scheduled with his physician’s assistant.  She examined me, prescribed stretches and instructed that if the pain had not gotten better  when I came in for my annual physical, in January, to mention it.  At that time, the PCP ordered neck/shoulder x-rays. Upon calling for the results, the staff’s response was  “there’s nothing alarming” so the stretches continued along with my regular exercise routine.

About three months later, while gathering information for a consultation with Dr. Joseph Dutkowsky at the Weinberg Family Cerebral Palsy Center, a written report indicating narrowing of the cervical spine was discovered in the patient portal.  I know what”narrowing” means and planned to discuss it during the consultation.  Unfortunately, while enroute to see Dr. Joe, I fell for no apparent reason.  Broke my hip and landed in the emergency room. Thankfully, only pins were necessary to fix.  During the conversation with Dr. Dutkowsky, he stated that many “high functioning” adults have cervical spinal stenosis.  Due to it’s slow progression, diagnosis is usually made once major symptoms occur.  At Dr. Dutkowsky’s direction, an MRI was done prior to my release from the hospital revealing stenosis.  There was a REASON for the fall after all.  This great man is lobbying for a cervical MRI to become routine for this demographic!

Long ago became content with my limitations, but refuse to quietly sit by and loose the abilities that are present!

More Post-Pediatric Info