Hannah's Story - Life with Progressive Supranuclear Palsy
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- Опубликовано: 25 окт 2012
- 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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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.
I'm very sorry to hear that. I'm in that position now- my dad was diagnosed with PD - about 5 years ago and then was diagnosed with PSP about 3 years ago. Now he is in bed - has PEG tube and has zero reaction... does not talk or move. It's killing me and my family to see him like this.... he is only 63 yrs
My husband had psp, was diagnosed in 2013 and passed away in 2016. He too suffered the
Same symptoms like Hannah and Dave’s father. It was extremely painful to see him suffer. To this
Day I cannot forget the last few days we spent in the hospital.
PSP is a brutal disease.
It's terrible, I feel you
My mother suffers from this awfull syndrome.... Can you please let me know how was with your loved ones...? The stages?
My mother can still walk, but very little....she is deterioring very fast... 😞
I never felt sooo helpless in my life...I even tought about killing myself...because I can’t take all this pain anymore...
Alexandru Elena Ruxandra be strong for her, there are more people like you so you are not alone. My mom has it too and It’s very painful to see her suffering but I’m here with her, taking care of her, making her laugh sometimes and loving her. Be strong and take care of yourself as well!
My dad passed away 6 months back, he was diagnosed wrongly every time we approached any hospitals in India.., the last diagnosis he had was 6 months back that he had PSP not parkinson.. . It's been a hell of 6 years of his life .. I don't have words to describe the pain we all suffer from PSP and families go through.. its the worst kind of disease possible .. just a big hug to all ... We will someday find a solution
Brother my mother passed away from this MSA 😢this june
My mom too...we haven't recovered from the trauma this disease caused us,one year later.
My husband passed away from PSP back in 2021. Horrible to see your love one dying slowly. The trauma from the pain the family goes is unbearable.
@@myrkaberros2663 take heart
My father is having psp disease and i am also very sad to see all the comments
Can any one give me some suggestion to help my father from psp
Thank you for making this video. I am so sorry this happened to your Dad and your family. I too was the main caregiver for my fiance who died a year ago from PSP. It was NOT a pretty journey as you all know. I can't imagine any worse disease now that I lived through all of the stages. You all did the best you could and your love shines through this video. I never left my Steve's side except when I went to work (I am a teacher). I took him anywhere I could in the wheelchair and fed him at outdoor events, etc. Steve was a strong and vibrant motorcycle rider, chef, mechanic, musician, and boxer. He was an inspiration to all when we went out as people told us our bond was an inspiration to what true love and compassion for someone is. Steve was my hero because he helped me (along with God :)) be the best person I could ever be through caring for him. I'm sure you feel the same. If there is anything I can do to help this cause, let me know. I want to spread awareness and help find a cure for PSP also. God bless!
I lost my father in June, I watch this horrible disease take my father in a 7yr period. I am so sorry for your father. I am 58 and it is devastating for me also. Thankful for your support and awareness you are raising. I cried through this video as I saw the exact condition as my father was. I am a Christian and my hope and faith keep me strong in Gods word that my father is now in Heaven ....pain free and no disease. I will be with Him again. I pray for all of you and will follow PSP progress info. Thank you again for sharing your life with the world and the awareness you are bring . Stay in touch, God bless you sweetie 😍✝️❤️
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!
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.
My Father is also Passed away 16 of December 2020 due to this Cruel Disease. I m from Pakistan, this disease was very New here.. Even A lot of good Doctors were not able to diagnose it, then a Doctor who had a lot of practised from US, he told us in first visit abt this Disease,and he told us abt it's, unluckily there is not any Treatment for this disease and even not any one Effective Medicine which can Help to Improve My Father. That was the time when i started to Read abt Psp. My Father fought with this Disease almost 6 years.. And in last he gone very weak even he can't take side on bed.. he also suffering Bed sole from last 3 months but this was recovered much till to his last day... Me and my Elder Brother both Try our level Best to Care our Father, we didn't arranged any Care taker, bcoz what Can do Childs for their Parents, caretaker can't do That, and in this way Childs bcome Satisfy, they Do their level best, Bcoz All things of world U can Get Again but Parents r The One who can never get Back and Alhumdulillah! We Tried our Level Best first for our Mother till her last time and now for Father...
I seen my Father going as Sand slips slowly slowly from hands.... We both brothers and sister Missing our Father very Much...
I wrote all this for just onething. Please don't let be Alone to ur Parents when they bcome old or Sick,,, this is the time when they need Pay Back from U, what they did for us when we were a baby and we cant even drink or eat with the help of our Parents,. Believe Me if we Take Care of our Parents for Whole life then too we can't Pay reward of that Night, when our Mother or Father Let us take to dry and Warm place of bed and they go on that wet place of bed where we were pee🙏🙏🙏💓💓💓💓.....
In Islam There is Paradise in under of Mother's feet and Father is The Gate Of That Paradise❤️..
So Pay Attention to our Parents when they Need Us...
Hope All will b get what i wanted to say, bcoz of my English... Tc, Thnx❤️❤️❤️
I read this weeping,my mom passed away of this cruel disease too. So heart wrenching,I'm so filled with sorrow. It's been one year since her death,im still hurt.
So sorry for you But so admirable your caring. Hands on. Husband’s Diagnosis changed this week. June 28 2024
from Parkinson’ to PSA I am also sick and I find it very hard to. Why are you always crying People ask as I cry everywhere now At mall at library Neurologist ordered PET scan but really no cure no treatment You are a wonderful son to be with your father
I had this problem too. This is what I used Weedborn CBD products for :)
My Mother was diagnosed with PSP in 2016. Her symptoms started out with her being less social in 2012.. I also noticed a pink tint around her eyes. In 2013 she fell and broke her hip. The doctors did not know what her diagnosis was for several years. Her symptoms worsened which was hard for her because she was always fiercely independent. She also had this frozen look on her face, she would lose her balance and sometimes she would become combative. She evidenced many of the key symptoms of PSP and by October 2017 we had to put her in a care facility (which was the hardest thing to do). On November 26th, 2017 (several days after Thanksgiving), my Mother passed away. My Father and I went to see her on Thanksgiving. I told my Mother how much I loved her. Her last words to me were "I love you!" I think of my Mother everyday and I miss her so much. I pray that a cure is found for those with PSP.
😢😢😢😢
My dad had this also. All the visits to the hospital and failed treatments. Parkinsons meds etc. After 10 years he finally passed. He never lost his faith in God throughout it all, so I know we'll see him again. I know what you guys dealt with. Thank you for the video. Even though I'm posting 8 years later, I know you still think about him daily.
This is a terrible disease. It stole my fathers personality, his smile, his ability to laugh, and lost the ability to walk. He was always falling backwards in the shower, and bathroom, he was always full of bruises and stitches. He cried a lot and I cried with him. They worst part was he was all there and aware what going on. His last years he couldnt pray because he couldn’t talk and couldn’t remember the words. When he was bedridden he mumbled to me to “say a prayer” one day while I was lying in his bed telling him stories about his grandkids, this happened many times a day. I would tell stories thinking even if I could get him to forget he was sick even if just for a moment. I miss him dearly, what I wouldn’t give to see him one more day, to pray with him one more time. I look forward to seeing him again, until I get there I know he’s with Jesus now and he isn’t suffering any more.
Thankyou so much hannah,i was diagnosed recently with this,the hardest hill i have to climb,is in front of me,but i like your father,am at peace with this,i will continue to carry on,untill its time
I cannot express in words what I feel now... you are very brave and you are a real hero! RESPECT
May god bless you 🙏
My dad age 55 also suffering PSP from last 2 years, it's very difficult see our love ones in such conditions
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.
My mom died from this disease 2017, 2 years after it was discovered. It's a horrible illness, it sucks the life out of the body. My mother wasn't the Person anymore I used to know. For me it was especially hard and devastating to see my mom fading away in front of my eyes. I hope she has peace now, I love you mom.
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)
Hi Hannah, my dad has this, I don't think he has long left. Thank you for your film, it was very difficult to watch but does help people to get an understanding of this horrible condition. I'm planning to do the London2Brighton walk next year to raise money for the PSP Association and will use this video to help my fundraising.
My husband also sick of PSP. Sooo hard and such a wonderful,brave man with carrying this
Thank you for such a truly moving video. It was great to see you run the touch through Sheffield for such a good cause.
My dad has PSP and it really is hard to watch how it progresses but you just have to stay strong and believe❤️Live in the moment and don't think ahead just enjoy life as it is. In the present.
It;s terrible Im in the same situation. My dad is bed-bound with feeding tube, immobile and does not talk. It's a big tragedy for our family..
Thank you for making this video. I have recently become a care giver for a woman with psp. Everyday brings new difficulties and my heart goes out to everyone feeling the effects of this horrible disease.
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.
You are a hero!
we are so going through this right now. thank you for sharing your story.
My brother William was diagnosed January this year, thank you for sharing your families journey with this terrible disease.
My father also just passed away from complications of PSP, thank you for making the video.
It's terrible, May his soul rest in peace... me and my family are going thru this right now. My dad is bed bound for 3 months now, no talking no moving, on tube feeding - barely eating. Its a devastating disease for both the individual and his/her family.
Hi what were the complications?
I am so sorry for your Dad and your family. I know this video was posted several years ago, but I wanted to learn about PSP. I found recently learned that my High School Coach has PSP. She helped to look out for me when I was a kid. My heart breaks for her. Sending out energy for a cure for PSP someday. Big hug for you and your Mum.
It was lovely of you to share your story, and I understand how hard it is to go through with the pain of watching someone you love go through with it. My father who just passed away last July of PSP was diagnosed at the age of 58, and there fore had the disease for 6 years. My dad, too, was called David, and all of the things that you have described about him, I can almost say that are fathers are almost exactly the same person! I know it's hard, to feel the pain of watching him suffer. Just think of all the positive memories you and your family had with him. My deepest thoughts are with you, George and your mother. God bless.
I just lost a patient after caring for him for 11 months. This is a dreadful sad disease. Peace and love to all who have to deal with PSP. ♥
My dad has psp , it’s heartbreaking to see the decline in my dads condition…. People don’t know about this condition. Xxx
This made me cry. My adopted uncle has this condition and it’s difficult to see the disease progressing. I constantly look at videos to see if there is anything else we can do to help him. Your story touched my heart.
Excellent video, thank you, great help to all of us coping with this as carers for our family members at the moment.
Very sad and a very young man
Best Wishes to You, George and Mum xxx
Saw sad seeing this video. Thank you for sharing it.
Hi Hannah, Thank you for your sharing this video. I admire you for your courage and doing something for all the PSP patients out there! My dad was diagnosed with PSP in October 2012. It is a terrible disease and often I do feel helpless. You showed how you can make a difference. At the moment my dad is still with us, however, everyday the battle gets harder. Specially for him and my mom, who is his caregiver although he is now at a stage were his whole body got stiff........ Thank you!
Hi
Your father is still living? My sister died last week. She lived nearly 4 years with psp and died from covid..it is a very horrible disease.
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
My dad too just got diagnosed with PSP ,i thought he had parkinson for the past 2 years and here i am just looking for some videos to understand the diffrence between them :(
@@mayssa8790 I'm so sorry to hear that your father has PSP, lemme know if I can be of any help
@@mustafa128hhey man, any update about your dad? How did the disease progress over the years? Thanks
My mom may have PSP, she’s 64 years old and it’s hard to watch her day after day struggling to keep her balance, speaking, remembering things. I can’t imagine my life without her, luv her so much! 😥
Lost my Mum to PSP a week ago today. It was an awful disease that prevented her from eating and drinking in the final year due to chocking incidents, and instead she required RIGG feeding tube. As you are probably all aware it affected her mobility, sight, and in the last week to fortnight her speech. She was a true legend throughout and never once complained or questioned "why me?". We were lucky enough to get here into the most wonderful nursing home, when most wouldn't take her because of the unknowns of the condition or the reduced income because of the resource required. The last 11 months of Mums life was full of laughter, fun, and joking about with her new friends in Brandon Park (mostly staff). Without Brandon we wouldn't have been able to cope with day-to-day living so far from where Mum called home and Mum wouldn't have been her playful self with a single line-in carer. We cannot thank the home, and the amazing people that run it enough for what they have added to our lives - true angels!!
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.
I feel you... my dad is 63 and he's in the last stage has feeding tube, does not move or talk... it's terrible... its a big tragedy for us .... so I feel you
My dad has psp, he first got diagnosed with parkinsons. Second neuro was the one who told me, I never heard of this before. It's videos like this which help me get advice thanks
My Dad's wife has psp. I don't feel he is able to cope. Prayers to everyone reading this whose lives have been touched by this condition.
I lost my dad only a fews months ago to this disease.
As like many others, diaganosis was missed for a long time, within 9 months of him still driving and working and with the family thinking he was just ageing quickly he passed peacfully at home. I knew nothing of this disease and nothing prepared us for those 9 months of seeing such a active man slip away so fast.
The only advice i can give is to be prepared as the disease always ends the same way i am afraid.
Get medical care in place early and sort out your home so your loved one can be comfortable in familiar surroundings.
Our family was so consumed by the disease we didn,t have chance to seek support outside of the medical teams and in truth we proably felt uncomfortable looking as well.
Also make sure CHC funding is in place early to help get the correct medical support early.
Friends and family raised over £1000 for the PSPA instead of flowers on my dads final journey in the hope they can support you in your journey.
I'm so very sorry for your loss.
thank you for inspiring me
Thanks for sharing your story. My Dad of 70 just got diagnosed after 5 years of his balance deteriorating and not knowing the cause. heartbroken.
We believe our brother has this. There are so many emotions, mostly, sadness and fear of the future for him. He is the youngest of the 5 of us, the funniest, the most social. It is beyond heartbreaking. We need to look into round the clock care. Please pray. 🙏 ❤
Prayer for your precious brother. I lost my baby bro at 54. Symtoms out of blue started at 43. His only child teased for years about his drunk father who fell, couldnt talk right..kid needed intense therapy as result. Refused to have Dad at school events..so sad. By thirteen his kid had matured a hundred years caring for his father with such love..daily riding his bike across town to check on him and bring a treat..giving up lunch money. He lost his father right after..diagnosed bacterial pneomonia ..beat it in hosp..came home and aspirated three days later just before christmas..choking on floor despite feeding tube..middle of night. Declared brain dead. Worst experience seeing the impact on my beloved baby bro and family. His son is now 19 on his own and an amazing human beings. Kind to all. The world needs to know more about this insidious disease. In my brothers case it was misdiagnosed for years as myasthenia gravis. Finally, correctly diagnosed three years before his passing. It comforts me to know he's not suffering anymore . God bless you and your beloved brother and family.
GOD BLESS THIS FAMILY cried a lot ...
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
Hi
Your Mom is still living? My sister died last week. She lived nearly 4 years with psp and died from covid.PSP is a very horrible disease
My hope and thoughts go to you and your beautiful family Hannah
Thank you so much Hannah! My dad ist affected by PSP.
My Brother has started to spend Money for PSP. We need your Help!
Hello Hannah. My father is on the last stages of PSP,he went from jst a hardworking , always doing something, to jst crippled bedridren. So its very hard to watch my dad suffer from this
Sorry to hear about your father. My father also has it, and it's so distressing. Deteriorating so quickly. 😔
Going through this with my dad now. It's so hard.
CL ❤️
Me too. It’s horrible. He supposed to he playing with my kids and fishing. I miss my dad so terribly. He’s alive but not living anymore
Me too. I miss my dad.
@@shanikatharangi7596 Me too. I miss him so much. Lost him 7 months ago. Hugs.
Even my with my mother 😢
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.
I'm very sorry....
My dad passed away yesterday from complications of pneumonia. He suffered for 8 years, his last 6 months was painful to witness. I will never forget how my father went from normal to helpless in 8 years.
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.
dad, my hero got diagnosed with psp in 2021.3years changed him a lot , I feel like I need to always protect him while I was daddy's girl as Hannah said now I feel like I'm the one who's responsible for him, I love him so so so much and I can't imagine life without him , I just keep watching our old videos and photos , it hurts it hurts seeing him like that , I wish if I can do something , I hope whenever I come back and read my comment dad will be still here with us , I don't wanna lose u dad , please stay with me till I graduate , till I get married , I want my kids to meet their amazing grandfather , you are my hero and u will always be ..01/05/2024
Hey Mayssa, sorry to hear about your dad’s condition. Could you please share details about how the disease progressed over the years from onset ? My mom recently got diagnosed and I want to know what to expect. Thanks
My dad was misdiagnosed 😢 we are going through this now. Thank you for sharing 😢😢😢
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.
I sent a post about my father who got diagnosed PSP 3 months ago. He passed away the month after. He left us the day after his grandsons from New Caledonia left him to go back home... Even though they seem controless they still pick when and how to say goodbye.....
Thank you so much for this video. My Grandfather was diagnosed with PSP in 2006, he is in bed rest with a feeding tube and breathing support. It makes me feel like my Grandmother is not alone. Thank you. This touched me and helped me understand my Grandmothers suffering.
Jenny Smith Thank you!! Prayers to you as well.
My father was misdiagnosed first with PD about 5 yrs ago and 3 yrs ago was diagnosed with PSP. It's sporadic and devastating. It's killing us so hard. He has feeding tube as well. all the best to your grandma
My sister has CBD which is very similar to PSP. She was only 40 when she developed it. Lost the ability to talk completely within 3 months, lost the ability to walk within 6 months. My Mother had to move her out of her family home as her husband wasn't coping and was becoming abusive. Then my sister needed in home caring. We got her a computer that could pick up her eye movements and she used that to communicate with us for nearly 3 years. But now we feel she is rapidly going down hill and has dementia.
So sad watching someone so young go through this. Personally i think Stress led to my sisters illness starting.
My friends father has psp and I hadn't seen him in 4 yrs and when I did he was unrecognisable 😪 I cried from knowing what he was 2 what he became...i hope your at peace now uncle Jimmy. 💖🙏💖
My grandma was diagnosed with this a couple of years ago and it was horrible watching her slowly fade, only a couple weeks ago she passed away
Just found out my dad has this condition, he was originally told he had parkinsons. Since then the second Neuro as said he has this condition. In a way I am sad, but finally have a explanation why my dad is like this.
My step mom was just diagnosed. It’s just the beginning and it’s already so hard. 😥
I just lost my dad today from this illness that lasted 4 years. It tears my heart out.
My sister in law is in the last stages of this disease. Praying for all who are effected
My mother in law has this. Like many others we thought it was onset of parkinsons mixed with depression. We thought it was the medication she was on for depression. It's just such a rare condition with no awareness, even some doctors are unaware of it. This video had me sobbing as I know it's coming our way. All the best with your campaigns, I'm also trying to raise awareness through my RUclips channel.
We are a South African family whose lives were touched by PSNP.
It is the cruellest condition as it rolls slowly day by day.
My Mum was also first diagnosed with Parkinsons.
Her first indications were the falling backwards and the lack of mobility in her facial expressions which is also a feature of Parkinsons.
The most frustrating part of this type of MND is that there are insufficient numbers to do meaningful research.
Let's hope they can tailor the research to require fewer numbers.
Our hearts are with you across the ocean.
My dad past away with this terrible disease 3month ago. But I keep In mind he passed at home with is family at home and wa' not in pain.
I really hope they find something to just slow the progress atlest. But nothing atm. Feel for you guys all the best looks like he was well looked after buy you all
My heart goes out to those who has the disease, my brother in law has it and he is 55yrs my sister takes care of him, he is like a brother to me not a brother in law. From Cape Town South Africa
My father in law was diagnosed with psp this year, it’s absolutely heartbreaking to see him deteriorating,and being completely different person.
i wanted to document my grandma's journey with psp, but taking care of her was so tolling that i didnt have the energy to record anything. she's still alive but little more than a shell of what she was.
No words.
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.
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?
My dad is diagnosed with psp. Hard to see how fast he is deteriorating. He is still living in a hope that there will be a cure soon and he can be cured. Very hard to see him going through this terrible disease :/
just lost my grandad to this last week, truly awful illness
My grandma has this and I’m only 12 and I just can’t I’m sorry 😞😭😭😭😭😭 the worst part is the person feels everything they can’t do anything with themselves my grandma was also sooo active 😪😭😥😞
I lost my father he has PSP.Feeling helpless 😢.It is hard to see him like this
im 18 my father has psp im in my first year in uni and with this difficulty over my head ive been failing my course ive decided to change course and am currently struggling to cope with my dead he is in his finaly months
My granddad has this condition. It's hard to see him like this. It's nice to know we're not alone.
Same here
@@thefrenchfryguy9959 We lost him in February. Please, hold your loved one close for me. Hope you stay strong.
@@ThreeUnderscores I am so sorry to hear that😔. My grandfather is in hospis right now with maybe days or weeks left. And its very hard
@@ThreeUnderscores how long did ur grandfather have this condition?
@@thefrenchfryguy9959 We got three and a half/four years with him.
My brother, Gary Wood, passed away at 78 years of PSP. We still have no idea of how he developed this Disease.
My Grandpa had this. And he just passed away.
Beautiful Viideo! My 1st birtday today after my father passed away from PSP. Is there any place worth donating to fund for PSP cure research?
im so sorry for your loss... my dad is in the last stage... bed bound with feeding tube ... terrible cannot imagine its happening
I had someone special to me with PSP he passed away last year....
My grandfather suffered this problem he died 4 years later
2 Corinthians 4:16-18
[16] So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. [17] For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, [18] as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
My dad passed away 15/10/21 he just survived two years after diagnosed from psp he was just 64😭😭😭😭
Write to me about such symptoms under the comment. Ill for 19 years, the disease progressed slowly. Symptoms: observation, floaters, darkness, photophobia, headaches, severe buzzing in the head, narcolepsy, muscle atrophy of the whole body, muscle twitching, a feeling of inductance, body heat, sweating, severe general weakness. At the moment I am in bed 23 hours a day. Write below this comment if you have the same symptoms.
My beautiful grandma passed away as a result of this horrible disease. I miss her so much. She was two months shy of 70.
Rest In Peace Ahma. I think of you every single day and will for the rest of my life.
My dad is currently 55 years old and was diagnosed with psp 4 years ago. You know the rest I guess
My nan has it :(
My dad is suffering from same..
my poor aunt died of this terrible disease
I have a extended family member with PSP. SIGH...
❤
My poor mother died from this last December. She was diagnosed with it three years ago. She never got to the stage that Hannah's father got to here. She died from pneumonia in the end. It was absolutely terrible, there just aren't many worse conditions out there
توفي والدي بهادا المرض بعد اقل من سنة من ضهور الاعراض عليه و من معرفتنا بهادا المرض اللدي ليس له دواء و هو من الامراض التي تحسسك بالعجز من ان تفعل اي شيء للمريض سوي انك تحاول تخفيف اعراض المرض علي المريض و مع ذالك تبقي عاجزا امامه لا تستطيع فعل اي شيء للاسف و تبقي معانات المريض قاسية للحربي و لا قوة الا بالله
الله يرحمه 🙏
@@lumaa.3187 🤲 اامين
my dad also psp patient
My mate died of the disease ,this April age 57 ....a complete Bastard of a disease
My Grandfather died from PSP, and so I never really got to know him properly as I was so young. But everything I know from this decease comes from what I learnt from my mum; although I did not experience it first hand I can imagine how difficult it is having someone in your life slowly deteriorate as such. I send all my blessings to her family.