The Alzheimers Society has two videos on youtube....one is a clip of Christine Bryden speaking to the Forum
The second is a short interview I gave after the Forum. Unfortunately there was a lot of background noise, however I think I got the message across that we still have a lot of good living to do.
Monday, March 28, 2011
Sunday, March 27, 2011
Another article
Here is the third article done by The Star in Toronto:
Two of our sons have phoned to say the CBC link to my video is broken, however I imagine CBC will get it up and running tomorrow.
Saturday, March 26, 2011
Great success
Just a quick note to say the Changing Melody Forum was a huge success today, and my speech went very well. Here is the link to the CBC article and video which came out today as well.
Click here
Click here
Thursday, March 24, 2011
Globe and Mail article
Rethinking our approach to Alzheimer’s
A new pamphlet for Alzheimer’s patients suggests readers 'see the world through the eyes of your grandchildren and the young people in your life.'
I was talking on the phone with a woman named Brenda about public speaking – which as a challenge ranks very near the top of everyone’s nightmare list.
“In the beginning, you could not have paid me any amount of money to speak in public,” Brenda told me. “The first time I did I was a mess.” Now she can speak for up to an hour – “I do have to have notes” – and always has people to prompt her.
She’ll be speaking briefly this weekend to more than 200 people at the Sheraton Hotel in Toronto, but what’s remarkable is that Brenda Hounam has Alzheimer’s disease. She’s one of the organizers of A Changing Melody, an interactive forum complete with audience activities, which will also be broadcast live online for people living with dementia, their caregivers and professionals, to be held Saturday in conjunction with the 2011 Alzheimer's Disease International conference.
Ms. Hounam, a former accountant who lives in Paris, Ont., was diagnosed at 53 with the early onset of a disease that has only one public profile. It’s portrayed as a tragedy that robs its victims of their selves, upends families and – you’ve seen the headlines – is the potential calamity awaiting us all. In fact, some middle-aged people I know are so terrified that they will get “it,” they can’t even joke about having a lousy memory.
Brenda Hounam says that when she was first diagnosed in 2000, “I lost everything.” She couldn’t work and when she told people about her condition, she says, she was met with “patronage, avoidance and denial.”
But now she is passionate about conveying that “there’s hope and possibility.” The general public, she says, doesn’t know anything about that.
She’s been instrumental in getting people with dementia together to produce a series of pamphlets called By Us For Us (“at first they said you can’t put eight people with dementia in a room together and get this done”), offering tips on how to get the best out of life. A recent pamphlet, Living and Celebrating Life Through Leisure, suggests readers “see the world through the eyes of your grandchildren and the young people in your life as they have unconditional acceptance,” play Nintendo and Wii, and “DVD your favourite TV shows or news and watch them several times to follow the story line.”
I loved talking to Ms. Hounam. We both laughed when I said, “You’ve had this disease for 11 years,” and she paused and said, “Have I?” Her disease has definitely progressed, she said, but “I always seem to find something to keep me going.” Without that sense of purpose, “you get drawn into this disease very quickly.”
I also spoke to Mary McKinlay, 66, who is from Napanee, Ont., was diagnosed five years ago, and writes a blog – My New Adventure ~ Alzheimers (alzheimer-journey.blogspot.com). A recent entry which began “Sometimes I really hate being me!” detailed her misadventures with what she thought was a rice cooker but turned out to be a small crock pot. (Her husband Jim is now going to put a sign on the crock pot saying “no rice.”)
Last year, even though she was terrified, she delivered the keynote at a Kingston forum and said, “I got a standing ovation.” And this weekend, she’s actually looking forward to being a featured speaker: “This disease has taken away my fear – it’s great!”
I normally get suspicious of any attempt to prettify a disease, like the upbeat pink ribbonizing of breast cancer, to the point that some women write they are “grateful” they got the disease. So when A Changing Melody’s organizer, Sherry Dupuis, director of the Murray Alzheimer Research and Education Program at the University of Waterloo, pointed out to me that most of the media “perpetuates a tragedy discourse” about Alzheimer’s, I pushed back – what, you want us to say it isn’t a terrible disease?
But she held her ground: “There is an alternative discourse, one of hope. We try to show this isn’t just about challenge and loss. There’s also the feeling that “I’ve grown because of this. I'm an evolving person. I have the right to be treated as a valuable citizen.”
Most of the attendees, who come with family members and caregivers, are in the early stages of the disease and even though they find the day – from 10 to 3 p.m. – overwhelming, they come away inspired, reassured and even entertained.
Something about these two women lifted my soul: I suppose because, as a writer, I am aware of what effort it takes, even in a so-called healthy mind, to string words together to form a narrative, to tell your story in a way that is convincing and powerful enough so others will connect, let alone benefit.
Ms. McKinlay says she will talk about every aspect of her life, and the changes she and Jim have made to accommodate her disease. For instance, they used to love bicycling but when it became too much for her, her husband got a tandem bicycle so “I could sit back and enjoy the ride.” They’ve stopped even that now, but, she says, “I’ve discovered each day is a joy. You have to laugh at yourself.”
She then offered advice that's good for everyone who is getting older, never mind whether they have Alzheimer’s: “Just make everything work as long as you can.”
“In the beginning, you could not have paid me any amount of money to speak in public,” Brenda told me. “The first time I did I was a mess.” Now she can speak for up to an hour – “I do have to have notes” – and always has people to prompt her.
Ms. Hounam, a former accountant who lives in Paris, Ont., was diagnosed at 53 with the early onset of a disease that has only one public profile. It’s portrayed as a tragedy that robs its victims of their selves, upends families and – you’ve seen the headlines – is the potential calamity awaiting us all. In fact, some middle-aged people I know are so terrified that they will get “it,” they can’t even joke about having a lousy memory.
Brenda Hounam says that when she was first diagnosed in 2000, “I lost everything.” She couldn’t work and when she told people about her condition, she says, she was met with “patronage, avoidance and denial.”
But now she is passionate about conveying that “there’s hope and possibility.” The general public, she says, doesn’t know anything about that.
She’s been instrumental in getting people with dementia together to produce a series of pamphlets called By Us For Us (“at first they said you can’t put eight people with dementia in a room together and get this done”), offering tips on how to get the best out of life. A recent pamphlet, Living and Celebrating Life Through Leisure, suggests readers “see the world through the eyes of your grandchildren and the young people in your life as they have unconditional acceptance,” play Nintendo and Wii, and “DVD your favourite TV shows or news and watch them several times to follow the story line.”
I loved talking to Ms. Hounam. We both laughed when I said, “You’ve had this disease for 11 years,” and she paused and said, “Have I?” Her disease has definitely progressed, she said, but “I always seem to find something to keep me going.” Without that sense of purpose, “you get drawn into this disease very quickly.”
I also spoke to Mary McKinlay, 66, who is from Napanee, Ont., was diagnosed five years ago, and writes a blog – My New Adventure ~ Alzheimers (alzheimer-journey.blogspot.com). A recent entry which began “Sometimes I really hate being me!” detailed her misadventures with what she thought was a rice cooker but turned out to be a small crock pot. (Her husband Jim is now going to put a sign on the crock pot saying “no rice.”)
Last year, even though she was terrified, she delivered the keynote at a Kingston forum and said, “I got a standing ovation.” And this weekend, she’s actually looking forward to being a featured speaker: “This disease has taken away my fear – it’s great!”
I normally get suspicious of any attempt to prettify a disease, like the upbeat pink ribbonizing of breast cancer, to the point that some women write they are “grateful” they got the disease. So when A Changing Melody’s organizer, Sherry Dupuis, director of the Murray Alzheimer Research and Education Program at the University of Waterloo, pointed out to me that most of the media “perpetuates a tragedy discourse” about Alzheimer’s, I pushed back – what, you want us to say it isn’t a terrible disease?
But she held her ground: “There is an alternative discourse, one of hope. We try to show this isn’t just about challenge and loss. There’s also the feeling that “I’ve grown because of this. I'm an evolving person. I have the right to be treated as a valuable citizen.”
Most of the attendees, who come with family members and caregivers, are in the early stages of the disease and even though they find the day – from 10 to 3 p.m. – overwhelming, they come away inspired, reassured and even entertained.
Something about these two women lifted my soul: I suppose because, as a writer, I am aware of what effort it takes, even in a so-called healthy mind, to string words together to form a narrative, to tell your story in a way that is convincing and powerful enough so others will connect, let alone benefit.
Ms. McKinlay says she will talk about every aspect of her life, and the changes she and Jim have made to accommodate her disease. For instance, they used to love bicycling but when it became too much for her, her husband got a tandem bicycle so “I could sit back and enjoy the ride.” They’ve stopped even that now, but, she says, “I’ve discovered each day is a joy. You have to laugh at yourself.”
She then offered advice that's good for everyone who is getting older, never mind whether they have Alzheimer’s: “Just make everything work as long as you can.”
Published on Thursday, Mar. 24, 2011 2:45PM EDT
Sunday, March 20, 2011
A day in the life of......
Sometimes I really hate being me! I decided to cook some rice for supper tonight. I got out the rice cooker and measured out the water and rice then plugged it in. Twenty minutes later I went to check on its progress, and the pot was barely warm. I searched on the internet to see if I could find how long these rice cookers take. Then a light went off in my head....wait....was that the rice cooker, or was it a small crock pot I also keep in the bottom cupboard? Yep....slow cooker!!! I should have realized my error when I didn't see the measuring cup and instruction book that I keep inside the rice cooker, you would think eh? Jim says we could label them .... "No Rice" on the crock pot, and "Not Slow" on the rice cooker!
Saturday, March 19, 2011
Changing Melody Forum
I'm into the last week before the Changing Melody Forum in Toronto. Besides the CBC interview, I've also done a phone interview for the Toronto Star, and Monday do another interview with the Globe and Mail. Maybe I should double up on the vinpocetine to make sure I don't have any brain glitches this week!
Friday, March 18, 2011
No Changes
I can't say I've noticed any improvements with vinpocetine as yet. It certainly didn't make any difference at our son's birthday party. The activities and noise really got to me after a couple of hours. I'll keep taking them in case it just takes a wee while longer to sort out the mess in my head.
Sunday, March 06, 2011
Day Four/Five/Six of Vinpocetine
Well on Day Four I made it through a 3 hour interview for a documentary for CBC with hardly a brain glitch at all. Day Five we travelled to Ottawa to help Jim's Mom celebrate her 87th birthday, and then spent the evening playing Canasta with my siblings and their spouses with no problems. Today was a day of traveling on snow and ice covered highways to get home again, and I managed to keep it together just fine. Mind you I had my eyes closed a good deal of the way! So far I'm thinking vinpocetine may indeed be helping to keep things less scattered in my head. I will definitely keep on taking it, and keep you posted.
Thursday, March 03, 2011
Day Three of Vinpocetine
I guess two days of vinpocetine is not doing the trick. We went to Walmart and bought a few things, and left our shopping behind at the check-out counter. It was nearly an hour later after some more shopping that I was thinking about our Walmart purchases and realized the bag was no where to be seen. We were thinking how nice it is that we live in a small town, and going back to Walmart was only a five minute detour on our way home! So far there is no improvement that I can see....but we're in the early days yet!
Wednesday, March 02, 2011
Day Two of Vinpocetine
I was awake for awhile during the night and I was sure my frontal lobes felt like they were filling with blood! I probably have an overactive imagination, but it sure did feel like that! I asked Jim if he had noticed any difference, and he replied that no, he was a stupid as ever! I asked if I could quote him on that and he said that he would probably forget he'd said it was OK! tee hee
Tuesday, March 01, 2011
Day One of Vinpocetine
After visiting all the local pharmacies yesterday we had no luck finding vinpocetine. This morning I started searching via phone to Belleville and Kingston and finally found one single bottle at the Green Door vitamin store in Kingston. 15 mg capsules...90 in a bottle for $27.99. So Jim and I each took one with our Chinese buffet, and will take a second one with our dinner tonight. The Nutrition House in Kingston phoned me back to say they could order them in and the price should be around $12 for a bottle of 90 of the 15 mg capsules. I wonder if they are cheaper by the case lot.....I could start selling them to all my friends and relatives with foggy brains!
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