Posts Tagged ‘disability’

On Monday Michelle will again have spinal surgery at New York Presbyterian Hospital. They deflated the cyst in her spine in March but fluid has again filled the cyst. Now she is having surgery to put a stent in her cyst so this will not happen again. It is too dangerous to remove the cyst. Please keep her in your prayers.

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I gave a talk last night on the family and caregiving issues. One of the attendees spoke of a company that allows employees to donate their sick or personal days to another employee who might need them. What a wonderful idea. It doesn’t cost the company anything and it builds solidarity. How do we turn this into a national movement?

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It’s been awhile since I blogged. That’s because I have spent the last two to three years navigating a frustrating, complacent, and at times, brilliant health-care system. Michelle suffered a severe TBI in 1998 and had made remarkable progress to the point where she was walking with a walker. Then about three years ago her physical ability began to deteriorate. She developed severe spasticity, went from a minimal assist to a maximum assist transfer, had trouble standing, and developed high blood pressure.


I took her to her neurologist who referred her to a neurosurgeon for testing. The neurosurgeon told me that frankly he did not know why I was there. He said, “I don’t diagnose, I fix.” He then sent me to another neurologist who specialized in movement issues. This neurologist recommended a CAT scan and an MRI of her head. The MRI technician would not do an MRI without knowing what type of shunt she had. I did not know so the MRI was never done although the CAT scan showed there were no problems with her shunt.


Several months later she went to the ER on Christmas day. There was a lump on the side of her neck where the tubing of her shunt ran and she was having terrible outbursts. They did another CAT scan there and another test on her shunt. She was in the ER for over five hours and after four hours began to have loud outbursts. The tests showed that there were no problems and my discharge notes were on how to control temper tantrums in children. Obviously, the ER physician had no understanding of brain injury and I resolved I would never enter that hospital again.


I found a new team of physicians at New York Presbyterian Hospital. I went to the hospital on Long Island to pick up the copies of her tests from Christmas and as I read them I saw that there was the possibility of a shunt fracture. No one had told me this. When I took the reports and the scans to her new neurosurgeon he did follow-up tests and indeed it was found that her shunt was fractured in her abdominal area. The shunt was surgically repaired and afterwards she made some progress, (she could now do weight bearing) but she still had a great deal of spasticity. I contacted a new neurologist at New York Presbyterian and contacted the hospital in Chicago for her medical records in order to try to determine what type of shunt she had. The medical records were sent, I was told, but they never arrived. I then contacted the Chicago office of the neurosurgeon who had done the original shunt surgery. The surgeon was no longer there but his partner informed me that her shunt was not MRI compatible. We were therefore limited to only CAT scans. We did CAT scans of her head and spine and all seemed well.


I still wanted to know what was causing these symptoms and I still had trouble accepting that her shunt was not MRI compatible since the shunt was implanted in 1998 and she had had an MRI in 1999. I had my own copies of the MRI done in 1999 and I took them to her new neurologist. He was able to tell from these that she could have an MRI. I also tracked down the neurosurgeon who had put the shunt in and found him in Florida. I faxed him his operating notes and he too verified that her shunt was non-programmable and an MRI could be done. The MRI technicians were hesitant but her new neurologist informed them that it was safe to do an MRI. The MRIs of her brain came back showing no problems. But then we did an MRI of her spine and discovered that she had a large cyst in her spine. We finally found the cause of her symptoms and on March 11th she will undergo spine surgery.


The neuro team on Long Island was only treating symptoms and not getting to the cause of the problem. The neurosurgeon in Chicago, who probably never tried to find out what type of shunt she had but played it safe by saying that her shunt was not MRI compatible, delayed the process by a year while the cyst kept growing.  The team in the city followed the symptoms until they finally found the cause. I hope someone will learn from this posting.

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Thanks Pam, Dylan, Cody, and John for helping Michelle record the song she wrote. Here’s the youtube rendition.

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Around 2.4 million Americans sustain a brain injury every year. Around 1.5 million Americans suffer a heart attack or stroke every year. Why is is we don’t hear more about brain injury? Visit the home page of the Brain Injury Association of America http://www.biausa.org to learn more. Brain injury can happen to anyone at any moment.

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Today is the 16th year anniversary of Michelle’s accident. What a fighter she is and she does it with so much grace and humor.

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Our church in New York is in the process of renovation. Last evening there was a meeting for all who wished to see the latest plans. Everyone was thoughtful of persons in wheelchairs but they expressed their concern by including in the plan a ramp off to the side that would make the altar area accessible. I instead advocated for universal design. Most people did not know what that was. Many people think that if we are making someplace accessible we are inclusive. But accommodating and wholeheartedly welcoming are two different things. There is no reason why persons with disabilities should have a separate access to the altar when one access could be used by all. The goal is not to marginalize certain individuals but to make sure that everyone is included. The following web site has tips on how to make liturgical spaces more inclusive. It’s important that we all think about this.


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