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HELEN’S CRUSADE
By Don Rogers - Helen’s husband—Chico, CA

Helen was born and raised on a large farm in South Dakota along with five brothers and sisters. She was no stranger to hard work. At the age of 18, she developed a mild case of Polio, but she overcame any physical problems that had occurred. She got married and raised two children. In 2003, at the age of 73, Helen liked to take long daily walks. She became aware that her legs felt like they had lead in them and were glued to the ground. Headaches and memory loss became prevalent and she had trouble urinating. Her annual checkup with her family physician resulted in a recommendation that she see a neurologist. The physician thought that Helen was developing Parkinson Disease.

The neurologist saw Helen and ordered an MRI of her brain. He also gave her a battery of memory tests and then hooked up her legs with electrodes to evaluate how effective her nerve impulses were traveling to her muscles. The neurologist then concluded that Helen definitely did not have Alzheimer’s, but he felt she had Post-Polio Syndrome. He explained to us that the Polio had damaged some of the nerves to her leg muscles, but other nerves had picked up the impulses and rerouted them, therefore, she was able to resume a normal life for 50 years. Now, the nerves were worn out and not able to carry the extra load and that is why her walking was so bad. He advised her to do daily exercises and walking which would help and that she would not deteriorate further.

For the next few years, Helen followed the advice. In 2006, all the previous symptoms became progressively worse, and she found that she had trouble writing and forming her letters and could not remember how to spell simple words. She even had trouble in writing a check and signing her name.

One day Helen was reading a Woman’s Day magazine article (6/1/07). She ran across an article by Debbie Roll of Madison, Ohio. She told a very detailed story about how her mother was suffering from all the problems that Helen had and doctors told her mother that she had Alzheimer’s. Debbie’s mom was confined to a bed and required 24/7 care. Debbie felt her mom was “slipping away” at the age of 69. Debbie started researching the Internet, she found a physician that stated all Alzheimer’s, Dementia, and Parkinson patients should be tested for hydrocephalus - Normal Pressure Hydrocephalus (NPH). This was a potentially reversible dementia caused by a buildup of (spinal) fluid in the brain, and with surgery to drain the fluid, the patient could return to normal. Her mother had the shunt installed and within 24 hours there was a great improvement and eventually she had a full recovery.

Helen called my attention to the article and I immediately went to the Internet and found a wealth of information and literature on NPH. I was convinced that there was a good chance that this is what Helen had, because all the symptoms were the same. I downloaded the material and made an appointment with Helen’s doctor. The doctor was unwilling to read anything I presented him with, nor really listen to me. He folded his arms in disgust and said “No, Helen has Parkinson’s and there is nothing that can be done to cure it.” After much discussion, the doctor did agree to have another MRI done and compare it to the one done in 2003, 4 years previously.

After the new MRI was taken and compared – lo and behold, the ventricles had increased in size and due to this, she was referred over to a neurosurgeon, Jeffry Mimbs. After examining Helen, he concluded that her walking problems were caused by a pinched nerve in her 2nd lumbar vertebra. He wanted to remove it and we reluctantly agreed to the operation he suggested, thinking this is NOT going to solve Helen’s other problems. After the operation, Helen’s walking initially seemed to improve a little, but soon got worse, as well as the problems of incontinence, inability to write and spell, as well as memory loss and headaches. Dr. Mimbs agreed to test Helen for NPH. Helen was admitted to the hospital for (what is called) the Lumbar Drain. After all the testing was completed, the doctor agreed that Helen had NPH. At an appointment we had with the doctor, he got nose-to-nose with Helen and told her all the scary things that could happen. I don’t know about Helen, but he scared me, but not Helen. She looked him right in the eye and said “I don’t care. I can’t live like this so get on with this operation as soon as possible.”

Surgery was scheduled and Helen was implanted with a Codman Hakim Programmable shunt. Within 24 hours of surgery – Helen came back to normal and within 24 hours of surgery, she was released from the hospital.

Helen has had her shunt for over 3 years, and the doctor regards her as his Poster Patient for Hydrocephalus Recovery.

I am convinced that it Helen had not found that article in Woman’s Day on NPH that should would be dead, or confined to a bed. I am so grateful for that article and for the shunt that brought Helen back to me!

At 81, Helen leads a pretty normal life. She complains that her energy level isn’t what it used to be and I have to remind her that she isn’t 21 anymore.

I am convinced that it Helen had not found that article in Woman’s Day on NPH that should would be dead, or confined to a bed. I am so grateful for that article and for the shunt that brought Helen back to me!

If you would like to contact Don or Helen, Don’s e-mail address is: rogers3485@att.net

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