John

My Husband’s 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!

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