Hannah’s Story – Life with Progressive Supranuclear Palsy

When Hannah Daykin’s father was first told he had PSP, the lack of awareness about the disease made it so much harder for the family to deal with the diagnosis.

“The diagnosis didn’t feel real,” recalled Hannah. “We didn’t know what the disease was. If you are diagnosed with something like cancer people have heard about it and understand it. We had to research PSP and then tell other people what it was.”

The Daykin family have been involved with a new campaign to raise awareness of PSP and the affects it has on a family; please watch and share our hard-hitting film to increase public awareness of this condition.

For Hannah, the future means working hard to ensure more people gain a better understanding of PSP, its causes and hopefully a cure.

“I know it will take a lot to find a cure. But we need to get a better understanding of PSP. That’s the only way anything will change,” Hannah added.
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20 Responses

  1. Patrick Asseau says:

    Hello, my dad was just diagnosed with PSP a few days ago after he hed lost mobility for nearly 5 months. Hes suffering a lot from Trismus(jaw blocking) making it near impossible to have solid food and has dificulties to swallow. Also has difficulties separating dreams from real life. Were going with Dopamine and AntiEpilectic treatment in the hope to give him the best quality of life even though knowing theres no cure. Have these treatment ever helped make life easier for anyones family touched with this disease?

  2. Hiba El Gharad says:

    my dad has PSP he's 56 yo. nd it's really hard to see him getting worsr day after day. it's just really hurtfull to know how your dad's life gonna end. He's not at this stage yet but we're really suffering with him cuz he can't stand or walk by himself we need to be next to him always. And I feel more sorry for mom who has got now all the responsability yo take care of him nd us . just seeing hanna's dad makes me realise how dad's endind gonna be wich is helpfull cuz better expect the death than a surprising one. All love. Hope we find a cure.

  3. judo hernandez says:

    My dad is suffering from PSP.

  4. Around the World says:

    My dad is suffering from same..

  5. Sara Raftery says:

    my poor aunt died of this terrible disease

  6. jk says:

    My heart goes out to you, your mom and George. Thank you for sharing your story and raising awareness. My dad also suffers from this awful disease and although he won't see a cure, hopefully one day we will. Carry on and continue to make your dad proud! (you could the pride in his eyes when you carried the Olympic torch)

  7. Bigg Redd says:

    My grandfather just passed away from this disease at 76 . Originally diagnosed for parkinsons disease , he battled this for over a decade and was in hospice care the last 3 years of his life. Hes no longer suffering and in pain but he will be missed dearly.

  8. Applerade says:

    I had someone special to me with PSP he passed away last year….

  9. liy morrison says:

    Hannah and family – thank you for being part of this video and raising awareness. My dad was diagnosed 3 years ago (tho onset was likely much earlier). I am so sorry for the loss of your dad – currently going through the same with my own…he was a managing editor of a regional magazine and was all about words, writing and talking about politics and current affairs. He's reached the point now where he is unable to speak and now very close to not being able to walk at all. It's terrifying but my mom sis and I try to be strong for him and just ensure that he is as comfortable as possible.

  10. amie a says:

    I have a extended family member with PSP. SIGH…

  11. Kathleen Jones says:

    Thank you hanna for your video. My step mom who is 68 has this disease. She is unable to perform any tasks at all. Is completely wheelchair bound and needs to be fed. Her friends have mostly drifted away because they don't know how to communicate with her. The amazing thing though, while speech is almost impossible she still laughs at the punch line of stories. Loves to listen to opera. Is aware of what is going on around her. When we come to visit , we realize she is totally aware of her surroundings she just can;t communicate very well. As I helped set up Nursing Aids to help my 85 year old Dad help care for her, I asked her what was most important about her care givers. And she responded " that they make me laugh" While this is a horrible disease, my step mom has shown a peace and acceptance that makes one think about what is really important in life. The little time we have with one another is the most important. And remember to take time to Laugh. Thanks so much for sharing your story Hanna!

  12. Brett Hanna says:

    My grandma has this disease. At first we didnt know what it was. She was always falling for no reason. Eventually it got worse she lost the shape in her face. She couldnt talk eat move or anything. Fortunately she didnt suffer very long. She passed away after only a day and a half in hospice. We need to find a cure for this disease. RIP Mary Calabrese. My beautiful grandmother.

  13. Matias Giacobbe says:

    Mi mama tiene esta enfermedad . Como me duele ver su deterioro sin yo poder hacer nada

  14. Cristian Provoste says:

    Hola, me recuerda mucho a mi padre, el igual sufrió de esa enfermedad, falleció hace 2 años, se de lo mal que lo pasaron ustedes, pasamos por lo mismo. Muchos cariños desde Chile.

  15. Randi R says:

    My mom was just diagnosed with this horrible disease not 3 weeks ago. She was diagnosed with Parkinson's Disease 6 years ago but a month ago she took a bad fall and things changed and deteriorated and she started having terrible hallucinations and her new neurologist in the hospital said she does not have Parkinson's but PSP. My dad and I can see the difference in my once beautiful, vibrant mom. She is 74 and lost 30 pounds and can't hold up her head or keep her eyes open. She keeps one hand held closed so tightly and the other she bangs on the sofa, I think out of frustration. She cries out for help and we are doing everything we can for her. Hannah, your story is so touching and beautiful and I wish there was more information here in the US and more to do but my dad and I have already made contributions to a site called CUREPSP and are doing all we can for mom. She has a physical therapist and a 24/7 live in aid to help. She is now having a hard time holding her head up and complaining of neck pain. It is killing my dad – they are together 56 years in a loving, compassionate, wonderful marriage – the kind EVERYONE would wish for and my dad is suffering watching my poor mom suffer – I don't know who to care for first…. I HATE this disease. Thank you Hannah for sharing your story. I commend you and your family for being so brave in your fight against PSP.

  16. 1865charlie says:

    I was diagnosed with psp or the same as pbp. 10 yrs ago. It is a horrific disease. I have pushed now for 10 yrs but the neurologist finally told me I have gone down bad since she last saw me, and there is nothing more she can do for me. Except keep a check on me. Anyway enough about me. But I pray for all you who have lost love ones like Hannah's dad and have folks with this dreaded disease.

  17. mustafa128h says:

    Such a touching video, I cried a lot, my dad just got diagnosed with PSP a few weeks ago, only because I took my dad to see another neurologist for a second opinion on what could be done. For the past 4 or 5 years we thought he had parkinsons or parkinsons plus. My prayers to all you others out there who have this wretched disease and for all those who are doing a great job in caring for them. RIP David

  18. Philip Swain says:

    My dad had this. It was heartbreaking to see him deteriorate so rapidly from an active, strong joyful man to exactly how Hannah's dad is, utterly dependent on other people. unfortunately my dad died from a heart attack likely caused by all the stress he suffered during his demise. This disease robbed him of seeing some major milestones in my life; getting married, buying my first house, having a baby. Even though he died over ten years ago, I'm still grieving. I really feel for Hannah and Dave's family.

  19. Derek Hall says:

    Peace to all who are dealing with this.  My grandpa who is 85 has PSP and I go out to help with his care every weekend.  I feel for anyone who can not get proper care for this, it is not something you can do alone.  I am doing an informative speech at my college in order to bring AWARENESS.

  20. Karen Johnson says:

    thank you so much for this video. our mom has been dealing with this since she was 55. she was finally diagnosed correctly two years ago. She will be 73 in 3 months

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