Jan 26, 2017 Latest post:
Apr 10, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Here is Tricia's story:
Hello everyone! Thanks for your interest in Tricia’s story. The story begins just twelve short years ago when she began experiencing tremors in her arms. What was first thought to be the result of pinched nerves, turned out to be the first of many symptoms she would experience. The always-fit, former college basketball player was delivered devastating news shortly before the birth of our third child. Tricia was diagnosed with Multiple Sclerosis (MS), an unpredictable and often disabling disease of the central nervous system. Despite attempts to treat the disease with expensive drugs that make her feel terrible, the progression of the disease has not stopped, or even slowed. As it does, she is being stripped of bodily functions most of us take for granted.
So what is MS? MS is an autoimmune deficiency disease that slowly destroys the myelin sheathing (think rubber insulation around the wires of an extension cord) around her nerves and brain. As the myelin is destroyed, the nerves essentially short-circuit and prevent brain signals from reaching various parts of the body. Unfortunately, Tricia suffers from the most debilitating form of Multiple Sclerosis, Primary Progressive MS. According to her Neurologist at the world renowned Mellon Center at Cleveland Clinic, there are no FDA approved drugs/treatments that will stop, or even slow, the progress of this form of the disease.
Many of you have witnessed the progression of the disease firsthand. Only four years ago Tricia could walk unassisted. She now uses a mobility scooter to remain active in her three daughter’s lives. What few see is the determination to remain independent that is exhibited behind closed doors. She refuses to sit idly by while her family do the dishes, cleaning and laundry. Despite the inability to carry a laundry basket, she found that she can still move laundry baskets around the house. How many people do you know are mentally tough enough to push a full laundry basket around the house on their hands and knees?
MS has not only robbed Tricia of the ability to walk, she is losing use of her hands. Everyday tasks such as buttoning shirts, putting in earrings, and opening containers are now virtually insurmountable challenges. The only task that she has delegated is putting on makeup. Gretchen has become Tricia’s personal makeup artist. The most troubling symptom she experiences is dysphagia, or swallowing difficulties, resulting from damage to the nerves controlling the many small muscles in her mouth and throat.
Tricia and her family have exhausted every potential resource available in the United States. However, instead of taking her doctors’ suggestions to simply focus on ‘dealing’ with the symptoms and succumbing to her loss of function, Tricia refuses to give up. Her only option is to travel outside the United States for non-FDA treatments. It is hard to comprehend how the country with the most advanced healthcare in the world does not offer as many treatment options as can be found in the U.K., Germany, Israel, Mexico, Russia, etc.
A treatment called Hematopoietic stem cell transplantation (HSCT), is being used around the world to treat Multiple Sclerosis with tremendous success. The procedure is not FDA approved and therefore not available to the vast majority of those suffering from MS. Before anyone gets too alarmed about the use of stem cells, it is important to know HSCT uses patients own stem cells that are harvested from their bone marrow. After destroying the patient’s immune system with chemotherapy, doctors then attempt to “reboot” the immune system by reintroducing the patient’s own stem cells in the body.
The procedure is not without risks. In addition, there is a possibility it will not stop, or even slow, the progression of the disease. However, after a tremendous amount of prayer, Tricia and her family have decided that they would rather regret pursuing a treatment without results, than wondering ‘what if’.
Securing treatment has been a difficult and time consuming process. Fortunately, after being placed on a waiting list just a few short months, a spot has opened. Tricia and I (Jay) will travel to Puebla, Mexico in January 2017 for the procedure.
Those of you who know Tricia well, know how much she loves life. Despite her inability to walk, button her own shirts, put on her own makeup, etc., she never stops smiling and enjoying those things she can do. When asked what outcome she expects, her selfless response is simple, but significant. She wants to be able to walk down the aisle at all three of her daughters’ weddings.
Tricia and her family thank the outpouring of support from friends, family, and people they do not even know. As we take this giant leap of faith, we ask for your prayers."
"Life goes on whether you choose to move on and take a chance in the unknown. Or stay behind, locked in the past, thinking of what could’ve been."