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Archive for the ‘long-term health care’ Category

Most often when individuals have VP shunts to remove fluid from their brain, malfunction is indicated by cognitive deficits. CAT scans are used to determine this malfunction.

In Michelle’s case, however, she experienced a year of physical regression. CAT scans indicated that her shunt was functioning fine. Health-care professionals allocated her deficits to a progression of her initial brain injury. They treated the symptoms but were not searching for the cause. I was not satisfied with that explanation and continued to prod trying to discover what was causing her regression. She had been walking with a walker and now she could do no weight bearing. Her transfers were maximal assist and in many cases two people were needed to transfer her. If she went down on the floor it was almost impossible to get her up because she was dead weight.

Out of frustration I took her into NYC to see a neurosurgeon who specializes in shunts. There we discovered that her shunt was fractured in her pelvic area. It was repaired in May. Since surgery she is doing weight bearing again although she still has a long way to go to get back to where she was. It took us a year to have her condition properly diagnosed and I can’t help but wonder what condition she would be in now if her shunt had been repaired much earlier. I also wonder how much discrimination played a role in her care. The underlying attitude on the part of health-care professionals was, she’s brain injured what do you expect. I expect the same level of care that anyone else would receive.

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Please take a moment to watch this video and get involved.  We all need care and we all should give care.
http://www.caringacross.org/join

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After 14 years of making great progress, Michelle has had a major setback. Suddenly she has a great deal of spasticity in her legs and has a hard time standing. Her knees stay bent and it is hard for her to get out of her wheelchair. Is there anyone out there who has had a similar experience?

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Today we are celebrating our annual thank you party for all of Michelle’s aides and therapists and their families. We are so grateful for all of their help.

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http://www.nytimes.com/2012/12/03/sports/study-bolsters-link-between-routine-hits-to-head-and-long-term-brain-disease.html?smid=tw-share&_r=0

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It’s important to remember that persons are not burdens. When there are insufficient social, financial, and emotional supports the work of caregiving can become burdensome.

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Happy 36th birthday to my darling daughter. It’s now been almost 15 years since she was hit by a car and we are so thankful every day to still have her with us. She works so hard every day in her therapies and always brings a smile to everyone who comes into contact with her. What a treasure!

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