Prime of Life: A Family's Story (PSP)
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- Опубликовано: 19 дек 2017
- Pierre Gervais was diagnosed with PSP, and when he passed away his brain donation allowed for an autopsy that revealed he instead had CBD. Jocelyne and Pierre share their story.
My dad just passed away last July and he was definitively diagnosed with PSP with a brain autopsy. He had the frozen gaze, drooling (took drops to help reduce this), went from living independently to full-time care within 2 years, eating pureed food, in a wheelchair, unable to talk. First signs were confusing with Aphasia, Dementia/Alzheimer's symptoms-slightly slurred speech, slowed speech, softened vocal strength, "tip of the tongue" moments where he couldn't think of the word or would forget what he was about to say. He never had the tremors of Parkinson's, but his gait was stiff and he lost range of motion in joints, his eyes were both dry and didn't scan easily (but he had good vision-had cataract surgeries before diagnosis). He never complained. He used to take notes when he was able to write (fine motor went before gross motor), to express thoughts or make lists of things he wanted to communicate. We had a laminated letter board with pic symbols to help him communicate (but had to be at eye level and it took a long time to get through a word). He had drops for his eyes, We had to monitor his eating to prevent aspirations or him putting too much food in. Part of his symptoms almost OCD stuff-moving items back and forth, putting things in a particular way, moving his chair back and forth. He would fall and not tell us at the beginning. then his falls led to emergency room visits (stitches). Sometimes he had bladder infections so we thought that might be causing the fall). He had a cane, but couldn't coordinate using it properly, so he'd trip on it. Then he started using a walker, but would walk away from it, forget to take it with him when he went across, became incontinent, started needing more support with hygiene /bathing etc. He came to live with my husband and I for the last 7 months (when covid hit his care home). As awful as it was to watch him go through daily issues with eating etc., we are so grateful he as able to be with us and give something back to a man that gave me so much as a dad. He was active, athletic, was a retired high school teacher, travelled a few months of the year and went dancing every week. He was super social, funny, generous and kind to all that knew him. this is a cruel disease, and although the prognosis is not good, I am grateful he is not suffering anymore. he basically was trapped in his body for closer to 5 years. Sorry for going on here, but I thought my mentioning his specific symptoms may resonate with others trying to figure things out.
Thank you for sharing.
This was very helpful, my mother is in her 3rd-4th year of diagnosis. she is on thickened food orally, is there a possibility that she never has to go through PEG TUBE and continue oral feed throughout?
Thank you for sharing.....I felt like I was reading about my dad🥺😟
@@haniasaleem3832 Hello Hania. Unfortunately your mother will eventually get to the point where you will need to recure to tube feeding. My mother has PSP as well, she is on her 5th year already….bed bound….completely palalyzed, not talking….she still eats but very very hard and the food is blended… I think this fall we will consider a feeding tube for her as well….
My heart and prayers go out to you and your mother….it is the most painful thing…. Stay strong, please 🙏🏻
Thank you for writing this. You described what one of my parents is going through now. It has been over 7 years now. It is so difficult to see what is happening to the person. Bless you and your dad who is now at peace.
Grieving for someone who is gone, but still alive.
My husband has been diagnosed with PSP about 2 months ago but was in 2018/19 a geriatrician said that my husband had Progressive Supranuclear Palsy and put him on Kinson and said to our GP that if the Kinson did make a difference then it was Parkinson’s! My husband’s speech has been affected, his memory with cognitive impairment! My husband chokes on things at times, but, what hasn’t helped is having a stroke just after Christmas last year followed by another one in the first week of January which was a week after his first one which also gave him a brain haemorrhage which had taken about 4 and a half months to clear away ! He also has a blood clot on his brain! We are taking things one day at a time as I have Parkinson’s which I was diagnosed with in 2018! Thank you for sharing your journey with your husbands PSP!
My beautiful mother passed away 4-14-2020 from this horrible disease at the age of 80. She and my father were ready to have been married 61 years in May. It has robbed her of her life !!!! She fought this disease for over 6 long and hard years !!! In LOVING memory of my mother, Beverly. Love you Lori
My sister died from psp last week..She lived 4 years with psp ...what is the death reason of your mother?
So very sorry about the loss of your sister. My mother had PSP for 6 long years ! I could check off every box in the checklist for her. I really lost mother before she passed away. She could barely talk, couldn't eat much (food had to be pureed and thick it in her drinks). We were told she would either choke on her food or stop eating . She wouldn't even eat for me.. She stopped eating She was bed ridden and had a pressure wound (bed sore), that unfortunately didn't get any better because she wasn't getting enough nutrients in her body. Mentally, she was in a fog, starring. When she did give up her fight, she was ALL bones, she was about 80-90 pounds. 😪
How did she pass? I was diagnosed about six months ago and yes I fall a lot
Awful
My mother stopped eating and drinking, that's what she died from. Watching her mentally and physically decline was so extremely painful.
ABSOLUTELY HORRIBLE and RARE DISEASE
My dad died from this psp 3 years ago. From a fall. I miss him everyday. I prey and keep all of you in my hearts.
Thanks for sharing this. This knowledge will help me help someone I know with this
My mother has this, for 4 years now. It is too sad. It kills me inside.
I'm carer for a man who has this too, my heart goes out to you, very challenging times ahead for family members.
My sister died from psp last week..She lived 4 with psp..how is your mum now?
@@sarathsirimanna8964 Hi Sarath! I am sooo sorry for your loss! May she rest in peace and my hearth goes out to you!
My mom is still alive…now she is bed bound….hardly talks… Tomorrow is her 73 rd birthday…. I am at peace now with her condicion….
For whomever has a loved one right now with PSP….I wish everyone peace… and the power to get thru….
I am glad my mom is still alive….but at the same time….I am ready for the day that I will lose her….😞
Mu father died 15 days back because of psp
@@salmankhan-ud2tv I am sooo sorry for your loss…! May your father rest in peace and I wish you strenght thru this hard times…. 😞😞😞😞
Just been to my moms funeral today she was diagnosed 4 months ago, the last 4 months is absolutely awful never mind the last few years seeing her struggling to walk and all the falling
I lost my husband to PSP in 2017...I miss “us” every day as well....
Diagnosed with psp, just made 60. trying to get a second opinion a specialist. Please pray 🙏 for my health and strength. Thanks
Now a days is there any treatment for psp disease?
Actually my mom suffering from this disease.
I'm carer for a man with this disease, there is no medication, but I know he has no pain. He is in the late stages all I can say is he's progressing by the day. 💜
My uncle has recently been diagnosed with this we had no idea how long he's had it but he's already falling down a lot and having other issues does anyone know what time scale a person has once they have been diagnosed does it vary depending on the individual or once everyone reaches a certain stage it goes downhill fast and hard?
My mother had it and fought for 6 LONG and HARD years until she passed in April 2020.
She had every symptom that there was.
For PSP please search prashanth jana on youtube ...spread the awareness
Hi Aabhushan, my father is also diagnosed with PSP 6 months back. Can we connect? Need to talk to you about Dr. Prashanth Jana.
my lover men was died by this ill will be nearly 2 years before. We was not living together I WAS living in Poland and he in GERMANY/ We was not marry but I WAS loving him so much so much by 12 years. THE last 3 years he was in specjal home for ill and I EVER MONT WAS GOING TO HIM FOR 3 DAYS LOKKING FOR HIM. I WAS SEEING HOW HE WAS CHANGE MONTH BY MONTH AND MAY HEART WAS BROKEN THE MORE THE MORE/ I LOVE HIM VERY MUCH AND MISSING OLL THE TIME BUT HIS CMENTARY IS SO FARRYWAJ FROM MY CITY 7WARSZAWA7 AND HIS CMENTARY IS NEAR DORTMUND 7germany7.ITS 1300 KM ITS VERY FARRYWAY BUT i MUST GOING TO hin. I missing him everu moments and I WILL BE LOVING HIM EVERY TIME/
Em português
I really don’t know what to say.
My dad passed just this year (2020) from this disease.
He was first diagnose in 2014 .
Although I think it’s effects showed up much earlier than 2014.
I miss him everyday he was such an intelligent man.
I watched this destroy him every day.
Doctors could not offer much at all. In fact nothing.
CBD oil did help with his sleeping. That’s all
Right now I stand curious
Why
We apparently have a pandemic???
Less than a year later we apparently have several cures???
However it seems that no one knows anything about my dads disease. Apparently this has been going on for years?
Can any doctor help
I think not
With rare diseases, pharmaceutical companies and researchers do not prioritize them. It is the same with some rare cancers such as pancreatic cancer...not enough people get it to make it profitable for companies to invest in research.
@@v.a.9934 Pancreatic cancer is not rare. I wish it was, but it’s not.
I'm here because I saw a meme that Trump has this because he stands weird.