I think it’s terrible that Wendy has been accused of faking her diagnosis. I also think that what people need to remember is that everyone is different and so the disease will play out differently for everyone. Where Wendy digs deep and finds the strength to tackle events, others may not be able to due to lack of mobility or other issues. Where she has a magical connection to the keyboard others do not. This negates neither experience.
A major issue is the ignorance of the keyboard warrior. Keep up the great work, Wendy!
Absolutely, and as Wendy says herself, her experience of the disease is just that. HER experience, that's why we included so many other voices in this book – and they can't all be misdiagnosed!
Absolutely agree. We have a grandson with DS and autism and there is no way he will ever be able to appear on TV as an actor or presenter as some of his peer group have been able to do. It’s hard for us when people tell us how inspiring it must be for our grandson to see his friend George on CBeebies. Grandson is applauded when he can copy one letter of his name for instance. We are very proud to know George and we are very proud of our grandson.
Thanks for commenting, Doreen. I think it’s all about representation, isn’t it? And it’s very easy to become or at least feel invisible if there is no-one in the community representing your voice. In my opinion it is even more important for children to see people who look like them on TV/in the media because it starts a conversation for everyone. That’s what Wendy and other dementia ‘champions’ are doing, opening a conversation, comments like those of the Professor intend to close the conversation and how could that ever be good for anyone?
I agree about representation, but think those of us dealing with medical issues wish we didn't have to be part of a conversation teaching people or 'champion' anything. There are no two people who are the same - that's the big message. And, that Professor should know better!
I really enjoyed Wendy's first book and look forward to reading her new book. I think your collaboration is fantastic and it was really interesting to read what she had written about typing. My mum was the same with the piano - she could play when she could remember nothing else. And sing all the words! It was wonderful to see and we cherish the memory.
That story of your mum, reminds me of Paul Harvey, who was a music teacher, playing the piano. He has dementia, and his son encouraged him to play, using just four notes-you can hear it on YouTube. His talent is very much intact, to the extent his music has moved many to tears. How wonderful to have such a gift for many to enjoy!
More power to Wendy! I admire Wendy greatly and am inspired by her courage and determination. Dementia takes many forms as any competent medical professional should know. I have read both of Wendy's books and follow her blog.
This chap is probably a faker himself, someone who’s had some medical knowledge, and faking credentials to liven up his life a bit! Else he would not be quite ignorant to assume someone could possibly present signs & symptoms in the order on the page of the out of date textbook he’s borrow from the library! Go Wendy, you’re doing well!
Sir Terry Pratchett wrote seven books after his diagnosis and before his death and all but the last was still up to his high standards, his death stopped him polishing up that final book. He could type until almost the end but could not speak or write for those final few years. Without his computer he would have been stuck in bed cut off from the world. According to what Prof Howard seems to believe STP should have taken to his bed on the day of his diagnose and waited to die not raise millions for dementia support nor become a spokesperson and advocate for those suffering from dementia. Maybe Prof Howard would say STP did not have dementia but pretended to have it to sell more books - that seems in my opinion to be the line of reasoning he takes if anyone with dementia does anything more than lie in bed waiting to die. Maybe just maybe giving everyone an iPad, tablet or pc and lessons on how to use them at diagnosis might just help keep it progressing as fast as those who do give up as they may still be able to communicate and interact with the world after speech becomes too hard to use - my aunt in law died within two years as she gave up as she saw her parents die from its years before, shoved in a bed from moment of diagnosis and left waiting to die in the 1960s and she sadly presumed it would happen to her early 1990s. Her sister, my mother-in-law also was diagnosed but she went the opposite way into denial and in a way, it helped her, she was able to live alone, with our help for certain things until just over a year before her death but even at the end she was not so bad she had forgotten who we were or herself as breast cancer took her. She had made friends in her care home and took part in most activities, living life to her fullest until she suddenly slipped into a coma and died six weeks later from the breast cancer. She lived 8 years from diagnosis to her end and if not for the cancer who knows how many more years, she would have enjoyed life, still doing things even if in different ways from normal, she adapted as Wendy has.
I can understand that Wendy's ability to type has stayed with her. I am a typist and the minute I am conscious of which keys I touch it all goes wrong. When I type without thinking it flows. I can also copy type reams of information but be daydreaming of sunny holidays whilst my hands bash out yet another days work. It's just a different parts of the brain. I enjoyed Wendy's book, it's been very helpful. My mother (86) has undiagnosed but advanced dementia. My father sticks by her, he's 92. She refuses any medical help and I know from my own experiences with my ankylosing spondylitis it is incredibly important to have the right specialists around to, literally, have my back! My mother can no longer converse coherently, she's like a happy child and apart from refusing to wash, change clothes or use a toilet is still very much herself. It is a cruel disease.
Sorry to hear about your mum… but you’re right about typing, that’s a good way of looking at it, I’m the same with touch-typing. Wendy definitely relies on her gut brain, her gut instinct, her intuition as her other brain is less reliable. I wish there were more research on this particular area, perhaps we would nurture our gut brain more.
I couldn't agree more. I found his comments upsetting and uncalled for.
I find Wendy to be an inspiration, she uses her time to help others to adapt and understand the affects of a terminal condition. Sharing her experience to better our understanding and to enabling social and emotional connection so they don't feel so alone. That is selfless and is what this world needs! Not a outdated small minded pompous opinion 😐.
Yes, those comments were very upsetting, not just to Wendy but to anyone living with dementia. He clearly hasn’t read her book otherwise he would have seen that we had written about people just like him. So, perhaps he’s not as curious about the topic as he likes to think.
Although I've not been diagnosed with dementia, I can fully relate to what Wendy is describing. I've been through a very early menopause after I had my reproductive organs removed in my mid 30's, and ever since, I've had brain fog. Words will literally fall out of my head when I'm speaking, and I'll forget what I'm trying to say. I stumble over words and stutter my way through conversations.
When I'm writing, however, I'm eloquent and able to express myself with absolute clarity. I'm happier behind a keyboard, then I would be in front of an audience, even though I've hosted my own radio shows.
As for diagnostic 'experts' on the internet? They're idiots. Idiots who seem to think they know better than the NHS and the GPs and consultants who regularly see their patients. Some of these people even exist in real life, though, unfortunately.
My son was diagnosed with Autism when he was four years old. Throughout Primary School, his Speech Therapist decided she knew him better than we did (his parents) and the specialists at the children's hospital where he was diagnosed after a two day multi disciplinary panel had overseen him interacting with them, his peers and us. She dogged us for several years to get his diagnosis revoked; she contacted our GP, the local hospital and even refused to acknowledge his diagnosis in letters and meetings. A disability nurse attended one meeting and insisted she stop, that he was very much autistic and she was being unprofessional. The Speech Therapist did not relent, and we ended up having to make a formal complaint about her conduct. It was stressful and harmful; we began to think we were being Walter Mitty-esque characters - that maybe we were seeing things that were not there. We got him referred for a new diagnosis at a different hospital, and they refused to acknowledge it - saying that they were more than comfortable with his existing diagnosis and that the Speech Therapist needed to be fired for her conduct towards us and our son. We eventually got a new Speech Therapist for him, and she was everything the other one was not. She worked with us, and our son's speech began to improve in leaps and bounds.
I have a diagnosis of Endometriosis. And the amount of trolls I see online who state that it's not a real disease, that it's merely women complaining about periods. Not always men, either.
Unfortunately, we're always going to have to contend with Google Experts. They don't actually know very much, but think that because they can google the definition of something, they suddenly know everything about that subject and so are able to voice their uneducated opinions on stuff they know little to nothing about.
I think it’s terrible that Wendy has been accused of faking her diagnosis. I also think that what people need to remember is that everyone is different and so the disease will play out differently for everyone. Where Wendy digs deep and finds the strength to tackle events, others may not be able to due to lack of mobility or other issues. Where she has a magical connection to the keyboard others do not. This negates neither experience.
A major issue is the ignorance of the keyboard warrior. Keep up the great work, Wendy!
Absolutely, and as Wendy says herself, her experience of the disease is just that. HER experience, that's why we included so many other voices in this book – and they can't all be misdiagnosed!
Absolutely agree. We have a grandson with DS and autism and there is no way he will ever be able to appear on TV as an actor or presenter as some of his peer group have been able to do. It’s hard for us when people tell us how inspiring it must be for our grandson to see his friend George on CBeebies. Grandson is applauded when he can copy one letter of his name for instance. We are very proud to know George and we are very proud of our grandson.
Thanks for commenting, Doreen. I think it’s all about representation, isn’t it? And it’s very easy to become or at least feel invisible if there is no-one in the community representing your voice. In my opinion it is even more important for children to see people who look like them on TV/in the media because it starts a conversation for everyone. That’s what Wendy and other dementia ‘champions’ are doing, opening a conversation, comments like those of the Professor intend to close the conversation and how could that ever be good for anyone?
I agree about representation, but think those of us dealing with medical issues wish we didn't have to be part of a conversation teaching people or 'champion' anything. There are no two people who are the same - that's the big message. And, that Professor should know better!
I really enjoyed Wendy's first book and look forward to reading her new book. I think your collaboration is fantastic and it was really interesting to read what she had written about typing. My mum was the same with the piano - she could play when she could remember nothing else. And sing all the words! It was wonderful to see and we cherish the memory.
How lovely… and want a wonderful memory
That story of your mum, reminds me of Paul Harvey, who was a music teacher, playing the piano. He has dementia, and his son encouraged him to play, using just four notes-you can hear it on YouTube. His talent is very much intact, to the extent his music has moved many to tears. How wonderful to have such a gift for many to enjoy!
I think, from memory, we included Paul’s story in the book…
More power to Wendy! I admire Wendy greatly and am inspired by her courage and determination. Dementia takes many forms as any competent medical professional should know. I have read both of Wendy's books and follow her blog.
This chap is probably a faker himself, someone who’s had some medical knowledge, and faking credentials to liven up his life a bit! Else he would not be quite ignorant to assume someone could possibly present signs & symptoms in the order on the page of the out of date textbook he’s borrow from the library! Go Wendy, you’re doing well!
Sir Terry Pratchett wrote seven books after his diagnosis and before his death and all but the last was still up to his high standards, his death stopped him polishing up that final book. He could type until almost the end but could not speak or write for those final few years. Without his computer he would have been stuck in bed cut off from the world. According to what Prof Howard seems to believe STP should have taken to his bed on the day of his diagnose and waited to die not raise millions for dementia support nor become a spokesperson and advocate for those suffering from dementia. Maybe Prof Howard would say STP did not have dementia but pretended to have it to sell more books - that seems in my opinion to be the line of reasoning he takes if anyone with dementia does anything more than lie in bed waiting to die. Maybe just maybe giving everyone an iPad, tablet or pc and lessons on how to use them at diagnosis might just help keep it progressing as fast as those who do give up as they may still be able to communicate and interact with the world after speech becomes too hard to use - my aunt in law died within two years as she gave up as she saw her parents die from its years before, shoved in a bed from moment of diagnosis and left waiting to die in the 1960s and she sadly presumed it would happen to her early 1990s. Her sister, my mother-in-law also was diagnosed but she went the opposite way into denial and in a way, it helped her, she was able to live alone, with our help for certain things until just over a year before her death but even at the end she was not so bad she had forgotten who we were or herself as breast cancer took her. She had made friends in her care home and took part in most activities, living life to her fullest until she suddenly slipped into a coma and died six weeks later from the breast cancer. She lived 8 years from diagnosis to her end and if not for the cancer who knows how many more years, she would have enjoyed life, still doing things even if in different ways from normal, she adapted as Wendy has.
Thank you for sharing …
I can understand that Wendy's ability to type has stayed with her. I am a typist and the minute I am conscious of which keys I touch it all goes wrong. When I type without thinking it flows. I can also copy type reams of information but be daydreaming of sunny holidays whilst my hands bash out yet another days work. It's just a different parts of the brain. I enjoyed Wendy's book, it's been very helpful. My mother (86) has undiagnosed but advanced dementia. My father sticks by her, he's 92. She refuses any medical help and I know from my own experiences with my ankylosing spondylitis it is incredibly important to have the right specialists around to, literally, have my back! My mother can no longer converse coherently, she's like a happy child and apart from refusing to wash, change clothes or use a toilet is still very much herself. It is a cruel disease.
Sorry to hear about your mum… but you’re right about typing, that’s a good way of looking at it, I’m the same with touch-typing. Wendy definitely relies on her gut brain, her gut instinct, her intuition as her other brain is less reliable. I wish there were more research on this particular area, perhaps we would nurture our gut brain more.
I couldn't agree more. I found his comments upsetting and uncalled for.
I find Wendy to be an inspiration, she uses her time to help others to adapt and understand the affects of a terminal condition. Sharing her experience to better our understanding and to enabling social and emotional connection so they don't feel so alone. That is selfless and is what this world needs! Not a outdated small minded pompous opinion 😐.
Yes, those comments were very upsetting, not just to Wendy but to anyone living with dementia. He clearly hasn’t read her book otherwise he would have seen that we had written about people just like him. So, perhaps he’s not as curious about the topic as he likes to think.
Although I've not been diagnosed with dementia, I can fully relate to what Wendy is describing. I've been through a very early menopause after I had my reproductive organs removed in my mid 30's, and ever since, I've had brain fog. Words will literally fall out of my head when I'm speaking, and I'll forget what I'm trying to say. I stumble over words and stutter my way through conversations.
When I'm writing, however, I'm eloquent and able to express myself with absolute clarity. I'm happier behind a keyboard, then I would be in front of an audience, even though I've hosted my own radio shows.
As for diagnostic 'experts' on the internet? They're idiots. Idiots who seem to think they know better than the NHS and the GPs and consultants who regularly see their patients. Some of these people even exist in real life, though, unfortunately.
My son was diagnosed with Autism when he was four years old. Throughout Primary School, his Speech Therapist decided she knew him better than we did (his parents) and the specialists at the children's hospital where he was diagnosed after a two day multi disciplinary panel had overseen him interacting with them, his peers and us. She dogged us for several years to get his diagnosis revoked; she contacted our GP, the local hospital and even refused to acknowledge his diagnosis in letters and meetings. A disability nurse attended one meeting and insisted she stop, that he was very much autistic and she was being unprofessional. The Speech Therapist did not relent, and we ended up having to make a formal complaint about her conduct. It was stressful and harmful; we began to think we were being Walter Mitty-esque characters - that maybe we were seeing things that were not there. We got him referred for a new diagnosis at a different hospital, and they refused to acknowledge it - saying that they were more than comfortable with his existing diagnosis and that the Speech Therapist needed to be fired for her conduct towards us and our son. We eventually got a new Speech Therapist for him, and she was everything the other one was not. She worked with us, and our son's speech began to improve in leaps and bounds.
I have a diagnosis of Endometriosis. And the amount of trolls I see online who state that it's not a real disease, that it's merely women complaining about periods. Not always men, either.
Unfortunately, we're always going to have to contend with Google Experts. They don't actually know very much, but think that because they can google the definition of something, they suddenly know everything about that subject and so are able to voice their uneducated opinions on stuff they know little to nothing about.
Ahhh,
McNea's Law for Journalists.
I've still got my copy from University.
Well spoken Anna!