Help David Thrive with Parkinson's Treatment

My little brother, David, has early-onset Parkinson’s disease. At just 36 years old he began to experience symptoms and at 40 years old he was formally diagnosed. This was a very scary diagnosis, as Parkinson’s disease is a chronic, neurodegenerative disease that becomes worse over time. It has no cure. The deterioration of the brain impacts the body both physically and psychologically, greatly impacting the life of the patient and their family. Read more about Parkinson’s here: https://www.ninds.nih.gov/health-information/disorders/parkinsons-disease

At this point in the journey, Deep brain stimulation, which is an effective treatment option for Parkinson’s disease, is the best option for him to keep working and doing what he loves for as long as possible – teaching and being active with his family. Unfortunately, his insurance does not cover this surgical procedure, and it is incredibly costly without coverage. We are asking for help to make this possible for David and his family.

David is truly one of the best people I know. He is kind, genuine, thoughtful, and funny. He is incredibly smart, hardworking, and he enriches the lives of those around him, including his extended family, his friends, and his students and colleagues. All his life, he has liked to keep busy, whether it be teaching or working in the lab, creating or building things, spending time with his family outdoors, raising chickens and goats, gardening and growing plants, or playing music. All of these things require a degree of fine motor skills and mobility, which is greatly inhibited in someone with Parkinson’s. Dr. Dave (David) has also been teaching physics at multiple levels for 23 years now. In that time, he has had the opportunity to invest in the lives and minds of nearly 3,000 students. His ability to teach and inspire students, as well as his ability to support and do things with loved ones has come to a turning point, thus the need to reach out for a community of support.

David’s story:

A few years ago, David found out that it was going to get increasingly difficult to engage in his daily pursuits. Something became known that would interfere with his teaching and research, severely limit his ability to play guitar and drums, and make fine motor tasks very difficult or impossible.

Sometime during 2016, David began to notice stiffness and a bit of a shake in his right hand. Thinking that it was all of the computer work he was doing to earn a Ph.D., he shrugged it off as carpal tunnel syndrome. “It will improve when I’m not using the computer so much.”

David worked so hard to finish his Doctorate only to find the stiffness becoming worse and the slight shake becoming a tremor. He thought that it was carpal tunnel or maybe a pinched nerve in his neck as he had also begun to have muscle spasms in neck and back. A few months later, in the late fall of 2017, the tremor had begun to cause problems with David's writing and fine motor control. His handwriting had become especially messy, and he couldn’t hold a rhythm in his right hand when playing guitar or drums. On the way to work, he noticed his right foot had also begun to tremor. It was time to go to the doctor for testing. As soon as David walked through the door, the neurologist said, “You have Parkinson’s disease.” It had become that obvious to her trained eye. After some scans, and a titration of carbidopa-levodopa (a solution of combination medication used to treat symptoms of tremors, rigidity, decreased motor function), the verdict was in. It was confirmed to be Parkinson’s disease. In fact, the left lobe of David’s substantia nigra (a small brain structure that plays a key role in controlling movement, mood, and other brain functions) was almost completely gone. At the age of just 40 years old, David received a formal diagnosis of early-onset Parkinson's disease.

David and his wife, Krissy, immediately took action. They already led a healthy lifestyle, but David began a stricter exercise regimen, changed his diet to a brain- boosting diet, and started taking some critical brain building vitamins. David was also blessed with an opportunity to go to the best movement specialist in the region, maybe in the world. His new job had decent insurance that made this relatively affordable. This doctor prescribed an excellent form of Levodopa that made David almost normal again. This medication was extremely expensive, but his family was so incredibly fortunate that a grant was available to help them pay for it.

After a couple of years of doing relatively well on this track, David found out that his employer’s insurance provider would be changing. His premiums would double under this new plan. Not only that, but the new plan also pays nothing for out-of-network doctors and treatments. David lives in Northwest Texas but commutes into Oklahoma for his work. 2-year colleges in Oklahoma use the state’s insurance plan. Essentially, the insurance network is only within the state of Oklahoma. Neurologists are few and far-between in Oklahoma. There are only two movement specialists in the entire state, and they are both located in Tulsa, which is 4+ hours away. Distance aside, one doesn’t take David's insurance, and the other is not taking any new patients. There is only one surgeon that does deep brain stimulation in the state, and he also does not take the insurance.

This was okay for a while. The grant was helping with the cost of meds and UTSW (in Texas) was working with David and his family on the cost of office visits. Then another setback - the doctor suddenly retired. So, David returned to his general neurologist (still an hour and half away). Post COVID, inflation kicked in and the grant that had made David’s care available and affordable was no longer funded. This caused David to have to take a less expensive form of Levodopa that is dramatically less effective in mitigating the Parkinson’s symptoms and David’s ability to function at the same capacity. Additionally, with Levodopa, the dose must increase over time to maintain effectiveness; too much becomes toxic to the body so there is a limit where the medication is no longer effective because the dose cannot be further increased.

The best option to keep David working and productive is deep brain stimulation (DBS). DBS can greatly extend David’s working years - it will minimize the amount of medicine he must take, and it will help control tremors and painful rigidity. It will greatly increase his ability to perform fine motor tasks. Believe me, he would love to be able to carry a cup of coffee across the room without spilling it everywhere. He would love to be able to write legibly through his entire lecture. He would love to sit and have a conversation with you without you being distracted by tremors.

As mentioned before, David’s insurance will not pay for DBS because they consider it to be an “elective” procedure. It is incredibly frustrating that a procedure that helps someone keep working to provide for their family and have a reasonable quality of life for longer would be considered elective. This is not cosmetic!!! Due to the coverage determination (or lack thereof), it will cost approximately $120,000 for the DBS surgery and there will be additional costs for follow-up care. This is above the $6,500 he has already paid out of pocket this year for imaging and screening for the DBS surgery.

David thinks a lot about the future. He does not want to be a burden to anyone. He wants to be able to work as many years as possible to support his family. Will he be able to continue to educate and shape young minds? Will he even be able to care for and play with his grandchildren when they come along someday? Will he be able to make things for them or play them songs on his guitar? Will he be able to drive to visit his children at college? DBS will help him with this.

We are tremendously grateful for your support – any amount helps us work toward the necessary goal.