My Husband’s NPH Diagnosis Journey
Written by John’s wife, Sukey Jamison, in July 2023
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!
Coast to Coast Tour with Todd Touchberry
An Amazing Family’s Journey
November 17, 2023, marked the beginning of an extraordinary expedition for the Touchberry Family, a voyage that would redefine their lives. Their mission? To drive across the country in their century-old Model T Ford, a symbolic quest advocating for awareness and critical funding for hydrocephalus – a condition that profoundly touched their daughter, Elizabeth.
Did they achieve their ambitious goal? Absolutely! Defying all odds, the Touchberry Family accomplished the seemingly impossible, navigating from Sumter, SC, to the shores of Huntington Beach, CA, in a record-breaking 12 days (previous record was 14 days). Their cross-country trek wasn’t merely a physical feat; it epitomized resilience, determination, and an emotional roller coaster of experiences.
Elizabeth’s journey living with hydrocephalus began with a challenging diagnosis in utero, which cast a shadow of uncertainty. Doctors offered discouraging odds, even suggesting termination of the pregnancy, but for her parents, terminating was never an option. Their unwavering love propelled them forward, embracing the amazing child they were blessed with.
If you or a loved one is living with NPH, visit our website.
You will find a section full of helpful resources.
For more information on the Coast to Coast Tour and to donate:
You can also follow Todd Touchberry on Facebook for exciting updates!
Fashion and Philanthropy in Chicago
On Saturday, October 21, more than 700 people gathered for the Holy Apostles Philoptochos Society’s annual fashion show and luncheon, themed A Mediterranean Adventure. And what an adventure it was! Pam Crouthamel, a good friend of HA, was invited to co-chair the event this year, and HA was designated as one of the two beneficiaries. She took her role seriously, leading the group to their most successful event to date.
Sponsorships were secured, and they offered a variety of desirable auction and raffle items, along with cash prizes. Delicious lunch and an entertaining fashion show rounded out the afternoon.
When all was said and done, HA received $40,000 from the proceeds of this delightful event. Kudos and gratitude to Pam and her team for their wonderful work!
Corporate Council Program
The Hydrocephalus Association (HA) has a growing and diverse group of partners who are engaged, committed allies interested in developing and improving effective therapies for
hydrocephalus.
HA’s Corporate Council Program (CCP) is an effort to bring even more value to these partnerships and further the HA Mission. Partners will receive benefits throughout the year via HA event and program offerings, and access to our patient and provider community via surveys and focus groups. Participants will also have annual opportunities to meet virtually and in-person to explore relevant issues in the industry.
The CCP aims to drive efficiency and improve research and therapies by connecting partners with subject matter experts to accelerate the discovery and development of safe and effective treatments, education, and support for the hydrocephalus community.
CCP partners will impact the development and expansion of HA’s mission and enhance their engagement with the scientific and patient/family communities while highlighting their own contributions to the industry.
Unique Opportunities
Exchange open dialogue and information with patients and caregivers, leading experts in the field, and others on a wide variety of topics related to clinical development, regulatory approval, and market access of treatments for hydrocephalus.
Achieve Patient-Desired Outcomes
The CCP emphasizes the inclusion of patients, their caregivers, and treatment providers in discussions with industry leaders to ensure their input is included in the treatment development process. HA’s recent two-year Community Research Priorities project was driven by the opinions of these groups to help inform our direction and continues to influence our programmatic work.
Partnership Benefits
Six levels of partnership are available through annual sponsorship commitments to support HA Activities throughout the year. All partners will be invited to participate in, attend, and/or be recognized in accordance with the partnership levels and associated benefits provided.