About

Cerebral Palsy Positive highlights achievements while sharing information about the coexistence of aging and Cerebral Palsy.

Cerebral Palsy Positive’s mission is to share information regarding the coexistence of aging and Cerebral Palsy (CP) and to disprove the negative views of Cerebral Palsy that many in society have; including, money-hungry attorneys, health insurance companies, staffing companies, etc.  Everyone is not interested in understanding that there are several types of CP and each has varying degrees of severity. Unlike the negative propaganda, the information here is from FIRST HAND REAL-LIFE EXPERIENCE. Parents, I can imagine the initial shock of being told that your little bundle of joy isn’t perfect. However, DO NOT let  the ads of the money-hungry attorneys intimidate you!  Instead, realize that your child can live a fulfilling and productive life.

What was the catalyst of this venture?  In early 2008, based on MRI results, a spasticity specialist advised me to consult a neurosurgeon. I knew this was NOTHING good……it was lumbar spinal stenosis.  Ultimately, I had a laminectomy/fusion.  Mind you, I worked out 3 days/wk and hadn’t experienced any problems prior to the radiating pain that led to the specialist.  Then, almost 6 years later the same procedure at a different lumbar level.  All of this came as a surprise and I needed answers!  The few answers that I got made no sense, like….”you have tight hamstrings.”  Well, yes….they’ve been tight all my life.  Next!

It has not been verified that the surgeries were a result of the strain that my gait has put on my hamstrings, spine, hips, etc over the years, but there have been discussions.  Since I REFUSE to entertain the thought of a 3rd lumbar surgery being in my future, a lot of research has been part of my present.  Post-pediatric life with CP is full of surprise; a LEARN as you LIVE process.

LESSONS LEARNED

  • This journey has taught me that although CP is not progressive, it has physiological effects over time.
  • Don’t accept “because you have CP” as the answer!  The adage that “no one knows your body better than you do” is true.  If the medical professional seems dismissive and is not listening to your concerns, move on.
  • Yes, we all know that aging changes our body.  However, the normal decrease in muscle flexibility and strength has a larger impact on those living with CP because muscles and flexibility, due to increased muscle tone, are compromised from the start.  According to Mayo Clinic, there are actions you can take that will lessen the effects.
  • The days of treatment ending when you age out of pediatrics, are dwindling!!  These centers recognize that “lifelong condition” = lifelong maintenance.

 

It takes PERSEVERANCE to PREVAIL!

 

Cerebral Palsy