Patient Perspective: Living with Cerebral Palsy

In the Patient Perspective series, our goal is to provide a platform for patients to share their stories living with a variety of conditions. We hope that by letting the patients speak on their experiences, they will help future health care providers better serve their patients.

In today’s Patient Perspective, Renee Uitto writes about her life and how it has been affected by Cerebral Palsy. We are so grateful to share Renee’s story and her thoughts on the health care system. We hope you all will enjoy learning from Renee as much as we did.

Daily Activity:

At nine months old, I was diagnosed with Cerebral Palsy.  Cerebral Palsy is known as a condition marked by impaired muscle coordination, typically caused by damage to the brain, before or at birth. People have trouble understanding my speech sometimes, and I cannot walk.  It is also hard to move my arms. I crawled most of my life, but I haven’t been able to do that since I had hip replacement surgery. I always make the most of my life, no matter what. I always chose to remain positive.  When I was a child, a doctor told my mom not to expect a lot of me.  But I proved them wrong!!  I went to college, I got a degree, I lived on my own. What do doctors know? 

Education:

My education was an up and down roller coaster.  I was in regular classes since the 4^th grade, and mostly in 6^th grade and beyond.  Most of my teachers were fair and accommodated me with whatever I needed.  A few teachers that I had over the years believed that I couldn’t do the work, that I didn’t belong in their classes. This made me even more determined to do well.  One guy asked my mom if I had a brain, I could not believe it!!  I ended up getting an A in the physical education class.  Another teacher that I had would not let me speak in class.  This totally ticked me off.  It was unfair.  When I got to Oakland University, everything went much better!  The professors were fair and did what they could to accommodate me.  I got more time on tests.  I took them in another room.   I graduated with a Bachelor degree in Journalism in 1997.

Interacting with Doctors:

Doctors mainly talked to my mom when I was younger and looked to her to do the talking.  As I got older, in my 20s and 30s, I began to go to doctor appointments on my own, and I had to explain what was going on.  I thought it was much easier when I could go by myself and explain better, things with my cycle and migraine headaches.  No one knew better than myself what was going on with my body.   I went on the Depo shot, even though it was a little confusing at first.  I managed to get my migraines under control even though it took me visiting three Neurologists.  When I moved to Kalamazoo, MI from Detroit, my new Neurologist put me on a new medication and continued me with Botox.  I still get bad migraines, often every day but I feel they are better now.   I am comfortable speaking to doctors on my own, because this is my body, my life.  Now that I moved to a nursing home, I still get to talk to doctors on my own, which is very important to me.

The Healthcare System:

I believe the healthcare system has made great progress throughout the years, but I think a lot more needs to be done.  I don’t think the healthcare system understands persons with disabilities as well as it should.  The healthcare system often makes decisions that we don’t agree with.  

The State of Michigan wanted to roll out a model of integrated healthcare of people with disabilities.  This was called Section 298.  It was going to eliminate the Prepaid Inpatient Health Plans.  It was to be a connected health system, to serve physical and mental health needs. Lots of people did not agree with the plan, so the deal was finally depleted a few years later.

Challenges with Home Care:

  I worked with agencies throughout the years to get my caregivers.   Some of my caregivers were great, others were not.  They wanted to do things their way and forgot what I wanted.  Right before I moved to the nursing home, the two caregivers I had were the worst!  One made me wait an hour to get up because she fell asleep on my couch and she slammed me into my chair.  She was hard to get along with.  The other one took her side, no matter what.  It did not matter what it was.  They thought I deserved to live like a second-class citizen.  I did not get a shower.  I was always soaked and wet in briefs.  I was not happy with the way I was living.  It was time for a change!

My sister found Alamo Nursing Home.  This was perfect because my mom needed a nursing home too.  We moved in a few days apart, and we eat lunch and dinner together.  We also go to Bingo.  It has really worked out and I am glad I moved here.  I have a lot more freedom here than I did with my caregivers.

Advice to Future Health Care Providers:

Doctors have made a lot of progress working with persons with disabilities, but more still needs to be done.  Doctors should remember to talk directly to the patient, not to their companion.  Assume that patients with disabilities can handle their own medical care.  Do not assume they brought a companion with them.  Allow time to take a history on the patient and to do an exam.