Living with primary progressive aphasia | Jill's story
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- เผยแพร่เมื่อ 28 ก.ย. 2024
- Jill has a rare and devastating form of frontotemporal dementia (FTD) called non-fluent variant primary progressive aphasia (PPA). In this video, Jill's husband, Mark, describes the challenges of arriving at a diagnosis of PPA, managing her symptoms, and finding meaning and joy in life whilst living with PPA.
PPA is a debilitating neurogenerative brain condition that affects speech and language. PPA generally presents before the age of 65 years, significantly impacting family, vocational, social and community roles. Sadly, there is no cure for this disease. For more information on PPA and FTD, visit: frontierftd.org
Jill and Mark's children are raising funds to find more effective treatments for PPA. For more information on their initiative and how to donate, visit: crowdfunding.s...
All donations raised are tax deductible in Australia and 100% of the proceeds will go the FRONTIER Research Group. FRONTIER is a specialist research group at the Brain and Mind Centre, University of Sydney, dedicated to improving the lives of people living with frontotemporal dementia.
To keep up to date with FRONTIER's latest research on PPA and FTD, visit:
/ frontier_usyd
/ frontierbrainandmind
Video production: www.jonathanba...
Music: / peppinamusic
Thank you for sharing your story. I understand your frustration. I live in the UK and have been living with Cognitive Impairment since 2014. I see subtle changes in my behaviour, partly because I worked as a House Manager for the elderly, the most recent is a decline in the ability to communicate. I have withdrawn from group situations partly because I can feel overwhelmed but also because I find trying to "explain" something v difficult now. And what are conversations if not "explaining", processing information? There is so much we still need to understand. One thing with Aphasia is that the "person" fully understands their behaviour, unlike many other dementia.
God bless Jill and her husband
I pray you are still doing okay
Love the moments walking with each other and sitting near the ocean
Much love ❤️
What a fantastic video. I do not think in my almost 70 years I have ever seen such an expression of love. The subject matter was why I watched this, but I got so much more out of it than I expected. This is much more of a love story than any movie I've seen or book I've read.
Incredible testament to true love. My mother passed from Lewy Body Dementia. She had aphasia that worsened as her disease progressed, but it wasn't PPA. Over the years, I've read a lot about the most common forms of dementia and I think FTD with PPA is so heartbreaking. Thank you so much for sharing your story. I pray you are able to make many more beautiful memories💖
Hi, I’m from India, my father is 60 yrs old, he just got diagnosed with PPA(FTD). He was absolutely fine till Dec’2021. We started noticing him missing out one or two words, till we were figuring out which doc to consult and whether it’s a serious problem or just our overthinking, the problem worsened. He now speaks 2-3 words in the entire sentence. My heart is breaking, as a family we’re all so disturbed right now. Yesterday he got diagnosed with PPA, and I’m going through all the articles and videos online. Please help with whatever you can suggest. And yes, anyone reading this, pray that he gets back to his old self, please.🙏 He’s my super hero, can’t see him like this.
@@Skullscape007 I'm so very sorry to hear about your father. Dementia of any kind is a horrible disease and such a hard journey. I took care of my mom until she passed. It was so traumatizing to me but I'd do it again in a heartbeat. I miss her so much. What is your father's name? I will pray for him to be healed🙏
@@wellbredthreds772 his name is Ashok Pandoh, thanks for this. Please do pray. And, I just wanted to know right now it has affected his speech, will it affect other functions of the brain? I want to be informed and prepared.
My husband suffered a stroke 2 years ago. He has aphasia and very little speach. Extremely frustrating for him. He understands everything said to him but is not always able to respond as he wants. Bless you both . It is a very difficult journey.
What a loving, devoted, kind and steady man Jill has in her husband, Mark. God bless you both.
I love Jill's haircut. She's a beautiful woman.
amazing heart touching story.
Thank you for sharing your very difficult journey / in my thoughts
What a beacon of love these two are ❤
My husband has the same, . He has difficulty swallowing so I purée all his food. We do a lot of porch sitting now.
Beautiful people!
Beautiful ♥️
Look up using a PECS BOARD OR SYSTEM. And assistive speech technology
My mum has PPA, terrible disease
My husband's left side of his brain is affected he cannot speak either.,he can't drive anymore his reflect is affected .As far as his reading he is very slow and his writing he can't put the letters together to form a word
Why don't drs help
I can feel his pain.. My father has ppa.. i am full time caregiver of my father.. I gave up my career.. Because someone told me.. To care for those who once cared for us is one of the highest honours in this world..
My girlfriend has exactly what his wife has. She can’t speak. Read or write . Frontal dementia etc. Sometimes I listen to her old phone messages just to hear her voice again. I knew her when she was perfectly well. She can dance very good. Now she’s in Assissted Living. Like he said, the hurt is immeasurable. I’ll continue to see her, bring her a Coke french fries. And tell her I love her.❤️
That made me cry. ❤️
Hero
Dang dude. 😔 Your story is heart breaking. I will be praying for her and you.
I wish you two all the best
You are a beautiful and wonderful loving boyfriend.
I think I may have PPA and I am very upset and depressed over it. Can you tell me about her very early symptoms ? I have been saying the wrong words for the past five months.
Example - My husband asked me where I was going and I told him the wrong place that I wanted to say. I do this about twice or three times a day.II am saying the wrong words. I am so worried that I may have PPA.
Mye good wife was diagnosed with PPA two months ago. She is 59. Now we are trying to find a way how we can make the best of our future together. On top of our list is another visit to Australia. We desperately hope it will open up sometime during the next few months. Thank you Jill for sharing your story. Love from Norway
God bless you both
Bless you both, truly. The love and care you show is incredible in the face of such a cruel disease. This is heartbreaking, yet it is so warming to see how you try to overcome the challenges focusing on the happiness and love that can't be taken away from you.
What a beautiful example of a good man /husband staying together no matter what happens and she’ll do the same for him , such a beautiful example of true love 💕 💕💕💕
This gentleman sure loves his wife. Heartwarming
What a great man!!! She is a very lucky lady, as he is lucky to have her! God bless them both!
Every day spent with a person you love is meaningful, remain strong, you are such a caring person!
Dementia is a horrible disease! Of all the ways we journey to the end of life this one is the most devastating. Admiration for all who suffer it or are caregivers to those who have it.
I am so sad when I see this. My mother had two brain tumors that precipitated two strokes and developed Wernicke's Aphasia mixed with Broca's and Global. It was like we all created a new, special and specific language to communicate with her. For better than 20 years she fought to train herself to "make sense" to us. She wrote our names, birthdays, and other anecdotes over and over on thousands of pages of notebook paper to try to relearn and not forget, to no avail. So frustrating for her, Like her mind was trapped and could not express itself. Like your wife, she was so loving and caring throughout the ordeal. I miss her so.
💕
I cried reading this. I wad very close to my grandmother and it was very difficult to watch her slowly slip away from us. I still come across her little notes where she grasped to hold onto meaningful memories to stay connected.
What a touching story demonstrating both the profound love of two beautiful individuals and also how integral communication is to existence. Jill is still alert and perceptive, given her emotional reactions to her husband's explanations and demonstration of love.
🙏 Hang in there - you look great together 🙏 Much love from Oregon, USA 🙏
Thanks, Mark, for sharing your strength and love for Jill. My situation is similar--heartbreaking, of course, but ever hopeful and grateful for our wonderful friends and family.
Are you experiencing this?
@@cynthia3536 he/she says ‘my situation is similar’ so YES
Thanks Mark, I am entering a situation with my lovely wife right now which is confusing and frightening.. Your calm, loving, strong and positive words are inspirational and much appreciated.
The father of my child was relatively quickly diagnosed with this as he has PBP MND/ ALS. A small percentage of people get both together. His emotions and mental ability fluctuate rapidly quite often, but he lost his ability to speak coherently some months ago, due to the MND/ ALS. He sends us text messages expressing what is happening for him, but now that is becoming more difficult due to losing functioning of his hands. The loss of functioning, and missing out on our child's future, are what he wants to express to me. We need to make jokes, too! Sometimes his messages go from fear, to anger, to a laughing/ crying emoji 🤣 In three short sentences. He can be completely logical and write with his usual complete mastery of language. and simultaneously be forgetful, or confused about something he would normally have no problem remembering or understanding. Sometimes his jokes are a bit...unusual! I don't know when the messages are going to suddenly stop. Coming to terms with all the losses is the challenge and pain of it all. My heart goes out to this beautiful couple, too. Appreciating what you had, and what you still have, helps.
Mark's a wonderful guy and I hope he only remembers the happy memories
Not sure how old this vid is but assuming its recent enough, they seem to still be making some good memories through the the hardship. Truly inspiring
What a loving and caring husband you are to your wife. May God keep you strong.
Could be Bruce Willis in a few years
He is the reason I'm looking this video up. So sad.
What a wonderful man. God bless Jill.
my husband died in December 2020 after a long illness.
his mom has aphasia. she can only say a couple words or sometimes just a single word. this communication barrier added a layer of misery to an already sad situation 😢
It’s hard to see loved ones suffering,especially with communication ❤
God bless you both.
Very nice to meet you both, god bless.
What a beautiful family. This is what true love looks like
Yes my girlfriend also has PPA. Last year her words were stumbling. Now she’s in Assissted Living, and can hardly talk but she still understands what we say as long as it looks right at her and of course body motion helps. She has difficulty walking too but I don’t know if that is related to PPA. If anyone can tell me about that please tell me. I just saw her today. I love her deeply. And it hurts me deeply. She just squeezes my hand. Of course she has good swings , in bad
If you don’t mind me asking, how fast did it progress from diagnosis to the decision of assisted living? Thank you for sharing this!
@@sergeisokolov6849 I was told, she would diagnose in 2018. I met her, and 2019 of April. I saw Mm
@@sergeisokolov6849 i’m sorry I pressed the wrong button. She was diagnosed in 2018. I met her in April 2019. I noticed no signs. I didn’t even know what PPA was. Until her son told me. They put her in assisted living, her family, in October 2021. And even from that point until now, it’s getting worse. Now she can’t talk. She might be able to say one word here or there but that’s about it. I just hold her hand. She still knows who I am. She only weighs 100 pounds. But she eats like crazy. And she loves sweets more than usual. Especially drinking Coke and french fries cupcakes, buns muffins etc. but thank you for asking. I saw her progression start to finish, so far. And it’s horrible. This was an intelligent woman. When I met her. She’s way beyond speech therapy now.Don’t know how much worse this will get. But I’ll stay with her till the end, wherever that goes. Thank you
Does speech therapy help? My father is diagnosed just now and its been hardly 2-3 months since this has started. We were dependent on him for the pettiest of the things, heartbreaking to see him struggle to complete even one sentence properly. Doctors told me speech therapy wont help. M still not sure, does it or not?
@@Skullscape007 My girlfriend is way past speech therapy. It helps a little bit until they get to the next phase. It’s one phase after another. Never stops. Now she can’t walk, speak. Or has interest in anything. We did try reading together speech therapy. This disease just keeps going. I know I’m living it.
What a wonderful couple god bless you 🙏 is that a Dublin lreand top ☘
What a lovely man he is.
no sound!!!
I wisher a prayer for your wife 🙏 including all the people who has Aphasia just like me. May the good Lord bless and guide us. Amen 🙏
Non-fluent Aphasia case my patented product Enigma 2x work's .some limitations observed low salivary secrtion,Dehydrtion ,High sugar levels,frustation time ,in presence Airconditiom Enviranment spech Delay,slurry spech noticed
❤️❤️❤️❤️❤️❤️ thank you for sharing your story your love
❤
I was searching up why I often will say something when I mean to say something completely different, or type something but type something completely different. For Instance I would say Im going to the office to make some copies, I will say something like I'm going to walmart to make some copies. And people look at me like im insane and I ask what I said because I know I've done it 100000 times and I have to explain that it happens a lot I didnt mean to say that what I meant was this. But looking into that led me to this, PPA. Which is very scary considering my grandma died due to complications of Dementia that she got in her early 60s. Is this something that I have to accept will one day happen to me or are there any tests that can be done that show this is what is wrong, or anything to prevent it? Any thing would be appreciated
I will be praying for you Montana. 🙏
HI Montana- I 've been doing the same thing for a few months now. It just came out of nowhere !! I am very upset. I have had depression all my life and been seeing the same psychiatrist for 20 years. She thinks it could be my anxiety and depression. But I don't know. I use to get my words mixed up when I talked for years but I thought that was depression but now I am saying the wrong word a lot about twice a day, something I never did before. I feel something is really wrong. How long have you had your symptoms ? . Do you have anything else besides word errors . Which BTW is called" semantic paraphasia " meaning saying a different word that the one you intended to use
. This is so upsetting to me, I don't even want to talk anymore. I am not going to see a doctor yet. I'm hoping maybe it will go away in a few months. This started in May and it's August now. I am so upset over this. Like you, when this first started I went on line as to see what it maybe... Aphasia popped up and PPA every-time. I would appreciate your reply. Thank you
So sad.
Damn. Good luck.
♥️
Coconut Oil, Ashwagandha, Magnolia Bark, Citicoline and there are many more supps that may be of help. Most of all.... God.
Unfortunately, none of those things will help 😢
Such a lovely caring husband ❤
What is the long term prognosis for this disease?
Unfortunately it is a progressive disease and there is no cure💔
My mom went through this and frankly I wouldn’t wish it on my worst enemy. Typically they start to lose the ability to swallow and often aspirate (breathe in food particles) often leading to pneumonia. Like other forms of dementia, PPA as a subset of frontotemporal dementia, ends in death.
May God give you Strength
2:44 she felt it..
what an unbelievably strong pair. I hope they can find some form of peace
+00++0+
Such a horrible disease.😪
what a good man.
😣😭😭😭😭😭