In 2007 is when it all started. She had a fall and hit her head, which led to the discovery of her Hydrocephalus (water on the brain). She had her first brain surgery in 2008 at Johns Hopkins Hospital. Her neurologist placed a shunt for drainage and that was supposed to fix any symptoms she was dealing with (decline in fine motor skills, unsteadiness, etc). However, we noticed that she continued to decline. Her neurologist mentioned that she was showing some symptoms of Parkinson's Disease. From there she was prescribed common Parkinson's medication and we were told that her neurologist didn't feel the need to continue seeing her. So we moved on with life hoping that we had found the answer to her issues!
But that was just the beginning...... In 2013 my mom had a routine eye appointment and the doctor noticed a small black dot on the white of her right eye. She went to a specialist where it was discovered that she had Ocular Melanoma (cancer of the eye). From there we went to the best hospital for treatment, Wills Eye Institute of Philadelphia. She went through radiation treatments to take care of the issue but in the end the doctors recommended surgically removing her eye and putting in a prostetic. Through all of this, she continued to be so strong. She didnt ever show sadness or self pitty after losing her eye, she was just excited to have beaten the cancer and to have been in remission. Later that year she went in to the hospital for a routine scan to assure the cancer hadn't spread. It was then that the doctor noticed a spot on her lung. She was then diagnosed with lung cancer and shortly after went in for lung surgery. They took half of her right lung and has since been in remission.
All while dealing with these two bouts of cancer, my mom was still experiencing progressive Parkinson's symptoms. She was seeing a neuroligist at Geisinger in hopes to get some form of treatment that would show improvement. Over the years and up until now she has experienced a loss in her range of motion, slowness of movement, instability, difficulty in turning, weakened facial and throat muscles causing drooling and slurred speech, freezing of her gait, loss of control in her eyelids (always closed) and severe imbalance causing many falls daily. At this point my mom has to walk with a walker and some days a wheelchair would be best. Clearly the Parkinson's Medicine is not working.
As of this year we started seeing a new neurologist at Williamsport Hospital in hopes that his fresh perspective might give my mom a different diagnosis or recommended treatment options. He immediately questioned the shunt that was placed over 10 years ago and mentioned that it may not be working properly and that the build-up of fluid could be causing some of her symptoms. He suggested another brain surgery to replace the shunt valve with one that could be more precisely set to drain at her pressure. So June 27, 2017 my mom went in for her second brain surgery, as we again hold on to the hope that THIS will be the answer. Although we have seen improvement in some areas, she is still seriously deficient in most. She remained in the hospital for 5 days as she recovered from the surgery. They decided to discharge her on day 5 and send her home, she seemed ok but definitely not better. We knew that it would be a slow process and that we may not see improvement for awhile. Unfortunately we saw an immediate decline. She seemed more unsteady than ever and she had little to no mental clarity. On July 4, just 3 days after being discharged, she fell 4 times within a few hours of being awake and one of the falls caused a laceration in the back of her head. We headed to the ER for more staples and hopefully some answers.
After my mom was re-admitted to the hospital to be monitored, she encountered more problems. She noticed swelling in her left leg which was determined to be the result of a large blood clot. She underwent 3 surgeries in 3 days to break up the clot and hopefully avoid it causing any further problems. She spent 3 days in ICU recovering from those surgeries and is now residing in inpatient rehab at Williamsport Hospital. She is working with occupational therapy and physical therapy specialists to improve her movement to better accomplish daily tasks. Let's keep in mind that we still dont have a diagnosis as to why she is consistently falling and declining in health.
Through this recent experience, I reached my breaking point. I thought "I need to research my moms symptoms myself and do everything I can to get help because clearly no doctor is going to help us find any answers". I recently came across a movement disorder that perfectly matches my mother's symptoms and what she has been dealing with over the years. It is a rare disorder and VERY often misdiagnosed as Parkinson's disease. The disorder is very progressive so we are hoping to see a movement disorder specialist as soon as possible to finally get answers. This will require travel to the University of Pennsylvania Neurology Movement Disorder Clinic in Philadelphia.
Not only have my sister and I watched my mom lose her freedom to a cruel and devestating disease, but we have also watched my dad struggle mentally through the years. As time goes on he has been losing his wife day by day. He has devoted his time to being her caretaker, which cannot be easy for any spouse in this situation. Just two years ago he was let go from his management career of 10 years with a company, which was overwhelmingly devestating to our family. Financially they have been trying to climb their way out of an enormous hole since. I sit here watching my dad sacrifice everything for my mom, my sister and I and his grandkids. The hospital bills have continued to pile up over the years and even more so now that we are pursuing new doctors and treatment options. To say that I feel helpless is an extreme understatement. I am setting up this fund in hopes that I can relieve some financial stress in the upcoming months as we travel to Philadelphia for treatment. The funds will go toward existing medical bills, medicines, outpatient rehab, daily in-home care, etc.
We have always felt that we have an amazing support system around us and that is one reason why we have made it this far in our journey. We thank you in advance for your help and for sharing this story.
- Terry & Kathy Miller
- Lynn Frey
- Gina & Brian Kriger
- Larry & Stefanie Allison
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