Living with Parkinson’s

April 8, 2013

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The following is a true story. The names have been changed to protect privacy and because I have not verified some of them.


My mother is a two time cancer survivor who, at the time of this writing, is 79 year old and fighting Parkinson’s. She is a fighter and is determined to live life to the fullest as long as she has life to live. Her battle with Parkinson’s is especially difficult since she is exceptionally intelligent with an excellent memory and predilection to learning and reading. Parkinson’s slowly reduces brain function but first affects motor skills resulting in the patient becoming trapped in a body that will not do their bidding.

In addition to the fight with Parkinson’s, my mother recently had hip replacement surgery. For quite a while she has had difficulty walking. This difficulty was written off as a symptom of the Parkinson’s. First looking at the knee, then at nerves, and all the time struggling with communications between a Parkinson’s patient and doctors, the hip was determined to be the problem. Since it took a long time to isolate the problem, the hip was severely deteriorated, but still repairable.

The surgery was successful, yet she continued to drag the affected leg. Meetings with the surgeon just confirmed the success of the repair, but could not address the continued lack of functionality. My parents took this to mean that although the pain had been relieved, the possibility of walking free of aides was not in the offering. Resigned to that fact, they purchased a new scooter and made sure that the walker was in good repair.

The Story

Because of the Parkinson’s, my mother has a quarterly meeting with her “Brain” doctors. These experts have been working with my mother for close to ten years. They have tried various cocktails of medications to restrict the progress of the Parkinson’s. They have also monitored her remaining functions and recommended exercises to maintain as much mobility as possible. Once a year, an MRI is performed to map her brain and locate any additional damage from the disease. The quarterly appointment that follows the MRI is generally a more extensive meeting that includes discussions with both of my parents to assure that they understand what is happening and what to expect.

This year showed that there was a retardation of the progress of the disease, which is wonderful news. The older doctor of the practice spent talked with my parents for almost an hour, showing them the MRI pictures, pointing out the areas of damage and explaining the functions that are affected by that damage. The younger doctor then spent some time with them basically agreeing with all that his older partner had said.

As he prepared to leave, he asked if my parents had any questions. My father decided to use this opportunity to ask about the dragging of the leg even after the hip replacement. One of the physical therapists had suggested that there was possibly nerve damage or that my mother had suffered a mild stroke. The doctor immediately changed his demeanor and started an additional evaluation.

This evaluation included having my mother lay back and raiser her legs individually and together, bending her knees and performing simulated stomach crunches. Then he had her stand up and try to balance, lifting one leg at a time, holding arms out and even trying to touch her nose with her finger with her eyes closed. All of this resulted in his diagnosis that there was not nerve damage nor had there been a stroke.

The doctor had my mother sit back down and started to talk. “Mrs. Shaw, you need to regain you confidence in your body. You have had a lot of pain for a long time, but now that pain is gone. You have feared falling due to the weakness of your leg, but that weakness is gone. You need to trust that you can use that leg.” My father hoped that the doctor’s speech would have an impact, but it seemed identical to what the therapists had suggested during the hip rehabilitation.

At this point the doctor stepped back. “Mrs. Shaw, you need to step proudly, lift your knees high, keep your chin up and focus on your destination. Concentrate on not shuffling.” He lifted his chin and raised his leg high as if marching in place, then lifted the other. As he lifted that leg, his pant leg rose to expose a metal rod. The doctor was an amputee. His leg from the knee down was a metal rod. Both of my parents were shocked. There had been no evidence of this disability in the ten years they had been working with the doctor. There could not have been a better instructor for my mother.

Although she still used the walker, she marched out of that office with her head high, My father had trouble keeping up with her as she moved across the parking lot to the van. Over the next few weeks, she increased her mobility with her own therapy. She still needs the walker for major outings, but can navigate around the house with just a cane or by using furniture and walls for steadying. Her goal is to graduate to just the cane when out shopping or going to get the mail. The freedom that she has gained since the doctor showed her how to overcome adversity by example, has let her work in her gardens and simply enjoy the outdoors.

The Parkinson’s is still progressing and many of the things she enjoyed are not available to her anymore, but mobility is not currently as severely restricted as it once was. All victories in the fight with Parkinson’s are worth celebrating. I personally want to honor the doctor who has had his own fight with adversity and had used that adversity to help others.


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