Diagnosed at 75
John
Story Written by Wife
My Husband’s Normal Pressure Hydrocephalus (NPH) Diagnosis Journey
Day by day, I try to imagine how these past six months may have unfolded differently. There are so many ways it could have gone wrong. John went from a carefree sheep farmer looking at retirement late last summer to wheelchair-bound in a matter of weeks, looking for a diagnosis of brain malfunction by Christmas. Was it all good? Not necessarily, but in the end, we had the best result we could have hoped for. Was it easy? There is nothing easy about day-to-day living with and watching the one you love and have devoted your life to deteriorate in front of your eyes in a slow and steady daily decline. Ever hopeful, I held on to the dream that we would get through this dark tunnel, in hopes that at the end of the tunnel, there was not a train.
NPH was the suspected diagnosis early in October 2022, but there were questions about that due to the sudden onset of symptoms. Parkinson’s was ruled out due to the suddenness of symptoms. Tumors and cancer were ruled out also after CT scans and MRIs. We had to go through the proper medical channels, exercises, and regimens pertaining to getting an accurate diagnosis with blessings of insurance. Thank goodness for insurance! After numerous doctor visits, CT scans, MRIs, and bloodwork, we secured a scheduled hospital visit at the Cleveland Clinic on January 9, 2023.
This whole drama began to unfold in mid-September. October turned into November, which led to the December holidays with little celebration as my job as sole caregiver was to keep him safe – Do Not Fall! By December 27th, I knew from John’s debilitated condition (he was now wheelchair-bound) that he could not make it to January 9th. We went to Forbes Hospital ER, knowing we could wait hours for service. When we drove up to the entrance to the Emergency Room, the security guard met us at the car and said, “You might want to go somewhere else! We have just had a shooting!” I said, “Truly, I have nowhere else to go.” So, he said to pull around, and they would be out to help us in a few minutes, which they did. We did wait over 5 hours in the waiting room and then another 10 hours in an annex before he was finally admitted to the Hospital. The treatment that followed was professional and expert, as we had prayed and hoped for. The first procedure scheduled for Friday, December 30, was a lumbar puncture to determine if a shunt would be a feasible treatment. As scheduled, the procedure was done on Friday, and John showed slight improvement. He was more alert and communicative almost immediately. The shunt was scheduled for Tuesday, January 3, 2023, with PT, OT, and ST on standby after establishing a baseline, then checking in daily to monitor John’s progress. The first sessions were painful to watch. We were all hoping for improvement, which did begin to show after the surgery for the shunt.
John was in the hospital for a few days on floor five and then was moved to floor seven for rehabilitation. He stayed at Forbes Hospital for almost three weeks. Improvement was monitored daily by all involved, and it was truly miraculous. Progress on walking was slow but steady. We kept reminding him that three months of decline could not be rectified in a few days. We were looking at months to regain his strength, but what are a few months when the results could have gone without improvement? It is a miracle, thanks to God and the doctors, nurses, PT, OT, ST, and everyone helping with his diagnosis.
It is now spring, and John is mobile again, walking without help and regaining strength and mental capacities, as we all can say, “better every day!” We don’t have sheep anymore. At my low point, I sold our 300 + sheep, realizing I had to devote all my time and energy to my one little lamb. We will decide where we go from here once John is back on the tractor again. It has been a long winter, and we look forward to a healthy, happy, carefree summer!
NPH: John’s Journey, Two Years Later
It was late in 2022 that my dear husband became wheelchair bound, was unable to dress himself, or carry on a definitive conversation. Our peaceful farm life was in turmoil, and I was busy trying to find out why this was happening to him, while trying desperately to keep him safe. My motto was “Keep him from falling!” Luckily, as time goes by, those memories have become fuzzy and are superseded by the remarkable recovery that John has made in his NPH journey.
It has been a little more than 2 years since John’s shunt surgery, I thought an update would be helpful. Time is the great healer. Although our lives have changed dramatically since John’s treatment for NPH, we, now in our late 70s, are retired from our former farm business. We miss our lamb business, as it was our daily life for over 35 years. The places we visited and the people we met pursuing our “farm to table” dream created a colorful journey that led to writing our book, “Coyotes in the Pasture and Wolves at the Door.” Now that we are through the dark tunnel of NPH treatment and recovery, we continue to live on our beautiful western Pennsylvania farm, surrounded by nature’s beauty, enjoying every day as the gift that it is!
I wrote about John’s NPH journey in a blog for Brain & Life magazine in 2023 titled Keeping Wolves at Bay.
As devastating as NPH can be, with dementia-like symptoms and mobility concerns, I hope that NPH will come to the forefront of research, since it is treatable and can be reversed. I recently lost my sister to Alzheimer’s, as did John’s cousin’s husband. People need to know more about brain conditions and how those various conditions can easily affect anyone’s family, especially the elderly. For those friends who never saw my husband before treatment for NPH , they often remark, “I would never have known.” Thankfully, he is back to his old self: chatty, witty, independent, walking, and caring for himself. This is an amazing miracle in our book that we love to share! It’s with enormous gratitude to the medical personnel who supported our journey and made things right for us! We are blessed
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