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Building a new normal life after brain surgery

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glioblastoma_multiforme_patient_surgery_doug.JPGBy Karen Clendenin

Doug Clendenin was diagnosed with stage IV glioblastoma multiforme on May 15, 2012. Neurosurgeon Dr. Sujit S. Prabhu performed a lifesaving craniotomy on May 29, successfully removing 100% of the tumor. Due to the size and location of the tumor, however, surgery left Doug hemiplegic. He remained inpatient for 24 days in the neuro-rehabilitation unit and continues outpatient therapy at MD Anderson. His journey can be followed at http://prayersfordoug.com.

We have likened our brain cancer journey to a category 5 hurricane. We were hit hard with full impact:
-Diagnosis and surgery
-Entered the calm eye of the storm - tumor completely removed
-Lived through the dirty side of the storm - post-surgical physical deficiencies, radiation and chemotherapy

Now we are in the aftermath of building a new normal life that includes physical and occupational therapy and regular doctor visits.

We say "new normal" because life will never return to normal as we once knew it. And finding a new normal for a hemiplegic can be trying at times. You are warned and told to be patient and that recovery will come slowly, but hearing the words and practicing them daily are sometimes a struggle.

While each phase of Doug's journey is noteworthy, it is the steps that are taken through physical and occupational therapy that are guiding us to a new normal life.

Waking up from surgery a hemiplegic
Hemiplegia is paralysis on one side of the body. The sensation and feelings on that side of the body, according to Doug, can be described as numb, tingly, heavy and even void of feeling. It's like one side of your body has fallen asleep.

The day after surgery we were still in shock. We knew Doug had an incurable cancer, but we had faith, hope and conviction he would surpass the average mortality of a patient with glioblastoma multiforme, which is 14 months.

The therapists arrived and began working with Doug. He was standing with assistance and a walker in place that same day.

Today, Doug is going to his office and working full time. I have to drive him and carry his briefcase into the office, and he is walking a bit unstable and slowly using a cane, but he is beaming with pride and accomplishment.

Returning to work, albeit in a different form, is a significant part of rebuilding a new normal life.

Many people comment on his miraculous recovery in a short time. We credit our faith, attitude and the unparalleled treatment at MD Anderson.

The therapists in the neuro-rehabilitation unit on P8 and the outpatient rehabilitation center are specialized to care for and treat brain and spine cancer patients. We've learned that cancer adds to the complexity of therapy, requiring even more specialization, training and certification for therapists.

MD Anderson has therapists who are certified in neuro-developmental treatment as well as AONE for cognition treatment. These treatment modalities teach therapists to understand the whole patient and his interests.

glioblastoma_multiforme_patient_post_surgery_doug.JPGWith the therapist listening to the patient's interests, needs and desires, she is able to simulate environments for the patient's brain to recall familiar ways of living.

In a way, it's taking a shortcut to help the brain remember familiar habits or activities, so to not have to rework and labor over creating new pathways.

For example, Doug enjoys taking pictures. During a therapy session, he brought his camera and the therapist set some flowers on the floor. She asked Doug to imagine being in a garden and to take pictures of the flowers. This requires Doug to stand and balance, squat and bend, lift both arms and adjust the camera using fine motor skills.

Doing enjoyable activities that the brain can remember excites it to fire those pathways to work again. This type of approach enables success far more so than doing mundane exercises.

Also, while in the garden taking pictures, the therapist supports and facilitates proper motion. Therapists are often thought of as torturous, but not here. Doug looks forward to his sessions.

Recently, and on numerous other occasions, our therapist talked about ways she discovered to help Doug move muscles necessary for specific tasks. These discoveries come from hours spent, often outside of work, watching videos, reading and testing muscle movements to creatively develop ways to work with Doug effectively in the one-hour therapy sessions.

MD Anderson therapists are truly dedicated to their craft, to go above and beyond to provide the highest level of care to their patients.

Our new life

The past five months have been almost indescribable. Just like victims of a hurricane, we are continuing to rebuild our life, creating a new normal.

We are thankful to have MD Anderson. We are thankful for all the staff, therapists, nurses and doctors who have helped us in our journey.

Doug became one of the P8 star patients because of his outstanding team of caregivers and the easy transition from inpatient to outpatient care.

We are convinced there is no better place on earth to be treated for a brain tumor than at MD Anderson.

Resources
Brain & Spine Center
Options for Glioblastoma Multiforme (Brain Cancer)

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