A Girl & Her Dad: Divided by PSP United by Love

For those out there that know me and my dad, you know that these picture are of the Big Guy we all love and miss so much, Dave Kulas... most of these pictures are from over 10 years ago, before or around the time by dad started showing signs of the horrendous and life altering neurodegenerative brain disease known as PSP, Progressive Supranuclear Palsy. (There are many pictures intertwined throughout, please continue to click "read more" to get the entire story.)

PSP is a progressive brain disease with no known cause or cure. It affects brain cells that control balance, walking, coordination, eye movement, speech, swallowing, and thinking. Five to six people in 100,000 have PSP. Symptoms usually begin in the early 60’s, but may start as early as in the 40’s. In my dad’s case I can remember making a comment at his 50th birthday party that I just felt something was “off” about him, I wasn’t sure what it was, I just felt as if he was acting slightly out of character. Symptoms of PSP include: Loss of balance, Changes in personality, Weakness of eye movements, Weakened movements of the mouth, tongue, and throat, Weakness in all muscles over time, Slurred speech, Difficulty swallowing. 

PSP basically makes you a prisoner in your own body slowly over time all while losing even the ability to verbalize what you are experiencing. My dad did slowly but surely develop all of these symptoms along with even more detrimental ones over the next decade and a half following his 50th birthday.

He recently turned 65 and has spent his last years down here in Florida, where I followed him and my mom about 7 years ago from Pittsburgh Pennsylvania so I could help out caring for him, be near him as this disease wreaked havoc on his body right in front of our eyes. This entire disease and its process has taken its toll on everyone, not one person spared… My dad, our family, our friends, everyone has been affected by this. I would not wish this on my worst enemy. The saddest of all is that there is no cause, no cure and barely any treatment, especially not any highly effective treatment. Because of the rare status of this disease it remains in stealth mode flying under the radar of all the the big campaigns and highly funded research projects, we don’t see many fundraisers or celebrity donations being made out to CurePSP because it simply isn't popular. That is a sad, sad reality. I want to make it popular and I want to draw as much attention to it as I can. No one should have to suffer like my dad is and no one's family should have to suffer like mine has.

PSP has divided my family in more ways that anyone can imagine. Emotions run high, opinions are often the opposite, everyone losing sight of the real people deep down, feeling like we are enemies when we are all in this sinking ship together. We are all hurt by PSP and we all need to fight back. My dad is at a point that he can no longer fight but I will carry that torch for him. I will fight with every breath I have so that maybe just maybe the next girl will get to keep her Daddy a little bit longer.

We took care of my dad at home and made him comfortable as long as we could but when it became unsafe for both of my parents we knew we needed additional help from a facility. He has been living at a nice facility here in Port Charlotte Florida and is getting good treatment there however it has left an excruciating financial hardship on my mother and the rest of our family. We have tried to work with the programs and system but since he was diagnosed so long ago (about 8 years) and has been dealing with this so long the funds have just been exhausted and the bills piled up. Several months of having to pay for out of pocket nursing home rent and private aides just to make sure my dad was safe and well cared for. My mom has gone through their entire retirement fund trying to keep up with the costs that are not covered by his health plan, leaving her with nothing left for herself.

I can’t even express in words the emotion that this makes me feel but is somewhere in between the deepest sadness I have ever felt and the fiercest rage. I never wanted this for either of my parents and it hurts my heart and my soul to see them struggle like this. I unfortunately am not independently wealthy either where I can offer any sort of help, often having trouble making my ends meet on a monthly basis for myself. I do not enjoy being in a position where I need others' help and I know my mom doesn’t either but unfortunately this is where we find ourselves. Needing your help, everyone’s help. Any contribution, big or small will help and know that it will be going to help two of the best parents that there ever were. They got cheated out of their happily ever after, PSP cheated them of that. I do not want these financial problems to cheat them out of having a peaceful transition to final rest that they deserve.

A lot of people have trouble seeing my dad this way, seeing him struggle like this because he looks so different. It is a very painful thing to look at him and be around him, as selfish as that sounds, even though he is the one going through the disease and all the pain and all the suffering it is hard for others to be able to deal with it. Mostly because he looks so frail and so weak and so helpless but I assure you he is in there and he is fighting... His mind is there. I don't know if that's a gift or a curse but I know that when he tells me he loves me, I can feel that he means it and I am so thankful that I still have that, even though we are all going through this together, I am so grateful that he is still here to be able to hug and say I love you and hold his hand even if it is in a nursing home. 

Between my mom and I, we see my dad everyday... I do not mention money, I do not mention being sad or angry, I do not mention lack of treatment options or lack or research for PSP, even though all of these are very prevalent realities for me. I simply take him a single serve chocolate ice cream sundae every day and feed it to him. I want him to remember his time with me as something he enjoyed and remember me as happy. I do not want for him to worry about us or any of these issues. He worked so hard his whole life and never got to reap the benefits of it. Life was unfair to him and I don't want him to have one more single thing to deal with.

So this has become what our relationship is, me feeding him this ice cream sundae and telling him about my day. This has united us back together and even though he can’t express much anymore I know when he is saying I love you and I wouldn't change it for the world right now, it's what I have left and that is ok. He still gives the biggest hugs and is still watching all his "Dick Wolf" shows lol. I am asking for everyone to help us not let this terrible disease take anything further from my dad by making him transition to yet another strange place because we can’t afford to pay up. The name of the disease includes the word “progressive” because, unfortunately, the early symptoms get worse and new symptoms develop over time. So we know this is not getting better and we are nearing the end. We have come to terms with this and are just trying to make my dad as comfortable as possible. If you can help me do that by donating any amount or by sharing this and passing along the message we will be eternally grateful.

My mom is also starting a page for this same cause so if you have donated to her page please do not feel obligated to donate again, we appreciate and thank everyone for every contribution. We are just trying to reach as many people as possible and spread the word about PSP as well. If any funds are raised above what we need for the medical expenses and bills for my dad then those funds will be donated to CurePSP.org.

CurePSP welcomes donations to its research grants program. Since its inception in 1997, the program it has provided over $13 million to institutions and senior researchers with excellent track records of productivity and to junior people with original ideas and first-rate training.

CurePSP favors projects with the potential to produce preliminary findings that would support an application to a government agency for a much larger grant in the future. It does not restrict its grants to any country or continent. To apply for a grant, or learn more about our research please visit https://www.psp.org/iwanttolearn/research/

Another way to help research and yourself is to participate in clinical trials. Please visit the https://www.psp.org/ineedsupport/clinical-trials/ for more information. Also, consider registering with the FTD Disorders Registry for further clinical trial information.