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OT: Alzheimer's

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diggerfoot

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My "summer vacation" and beyond has been a five-month hike of the Pacific Crest Trail with my wife Cindy and daughter Charissa, starting last June and continuing until this coming Thanksgiving. This journey relates to Alzheimer's in several ways.

Cindy has early onset Alzheimer's, her first symptoms beginning when she was 49. Our unspoken mission for our recent 5,000 mile walk across the country was to improve her mental health. It worked. For example, she could not even help me set up a tent in the beginning of the year long hike; towards the end she could set up the tent by herself. This hike now is providing a similar "treatment."

Once the doctors stopped telling us "she is too young" and delivered the diagnosis of Alzheimer's we formed a bucket list of things to do, resolving that we would enjoy life until the end. The top item is to hike the Pacific Crest Trail, the only long distance trail we have not done together (I hiked the PCT in 1977, before we met). By completing this trail she achieves the Triple Crown of long distance hiking, something she has wanted to finish up for decades (she was the first woman to thru-hike one of those trails, the CDT, back in 1985).

In recent times I have used my passion for hiking to promote a cause. Formerly that cause was raising awareness for the presence and virtues of kindness and community. Now that the first five years of our marriage were spent taking care of my Mom with Alzheimer's, the last years will be spent taking care of Cindy, with a stint of taking care of her Dad in between, I've had it with this $&@-/):(; disease. My cause now is to raise Hope for Alzheimer's in several ways. Interested Boneyarders can assist me in several ways.

FOLLOW my blog. There's a button for that in the lower right hand corner. This currently reports on the Hope in Cindy's journey, with the underlying theme that even someone with advanced Alzheimer's can pursue dreams and live a vibrant life with enough support.
Most recent post: http://www.humanityhiker.com/of-dreams-and-dreamy-days

LIKE my Facebook page. Before the journey I was using this page to post articles about the Hope in lifestyle choices on Alzheimer's patients and caregivers. Admittedly I'm only reposting my blog articles right now because that is all I have time for on this journey, but I'll return to the former function when the journey is over. I also have a group page where I post nice pictures from the hike.
Fan page URL: http://www.facebook.com/humanityhiker
Group page search: 2014 Pacific Crest Trail Journey

DONATE to the Exercise for Brain Health Research Fund. This may be somewhat blasphemous on the Boneyard, but the University of Maryland is doing some good work in this regards and we are plugged in to that (other universities plugged into this particular line of research include Pitt, Wisconsin, Arizona and Harvard). As Dr. Carson Smith from UMd mentioned to me: "exercise is not patentable." Research into brain health does not receive the same level of funding as brain treatment with drugs. However, exercise is the only treatment shown to regenerate brain tissue. While that alone does not make you smarter or overcomes brain diseases, it's the one thing that provides the "raw material" to work with, something that provides Hope.
Donation site: http://tinyurl.com/umdbrainhealth

By Following my blog and Liking my Facebook page you will assist me with some fundraising ideas for the future. Such funds will continue to be used to support brain health research that focuses on lifestyle choices: exercise, diet, music, leisure, etc. Musicians might also want to check out my YouTube channel for a particular fundraising project, explained on the channel. That project will resume at the end of this journey.
YouTube project: http://www.youtube.com/humanityhiker

If you've arrived at this point thanks for your attention on this. Go Huskies!
 

UcMiami

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Digger - impressive stuff and I hope for the best for you and your wife - agree with your assessment of the disease as well!
Until I read this, I had not realized that physical exercise showed promise. I had seen that there was some positive results with mental exercise of different parts of the brain.
 

diggerfoot

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Digger - impressive stuff and I hope for the best for you and your wife - agree with your assessment of the disease as well!
Until I read this, I had not realized that physical exercise showed promise. I had seen that there was some positive results with mental exercise of different parts of the brain.
Exercise does not improve cognitive function directly, mental exercise is necessary for that. Exercise can repair what's been damaged, though exercise alone cannot repair faster than Alzheimer's can damage.
 

KnightBridgeAZ

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At the same time, CNN (and I think their medical man, Sanjay Gupta) is following a former dentist / professor with Alzheimers.

There was a long article on CNN (my homepage) yesterday. Especially striking was his comment, something on the order of, "all we really are is our memories", that's not an exact quote. Like your wife he is fighting as best he can, very frustrated with the battle and apparently doing better than some.

Sorry, I'm a bit inept at linking.
 
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My "summer vacation" and beyond has been a five-month hike of the Pacific Crest Trail with my wife Cindy and daughter Charissa, starting last June and continuing until this coming Thanksgiving. This journey relates to Alzheimer's in several ways.

Cindy has early onset Alzheimer's, her first symptoms beginning when she was 49. Our unspoken mission for our recent 5,000 mile walk across the country was to improve her mental health. It worked. For example, she could not even help me set up a tent in the beginning of the year long hike; towards the end she could set up the tent by herself. This hike now is providing a similar "treatment."

Once the doctors stopped telling us "she is too young" and delivered the diagnosis of Alzheimer's we formed a bucket list of things to do, resolving that we would enjoy life until the end. The top item is to hike the Pacific Crest Trail, the only long distance trail we have not done together (I hiked the PCT in 1977, before we met). By completing this trail she achieves the Triple Crown of long distance hiking, something she has wanted to finish up for decades (she was the first woman to thru-hike one of those trails, the CDT, back in 1985).

In recent times I have used my passion for hiking to promote a cause. Formerly that cause was raising awareness for the presence and virtues of kindness and community. Now that the first five years of our marriage were spent taking care of my Mom with Alzheimer's, the last years will be spent taking care of Cindy, with a stint of taking care of her Dad in between, I've had it with this $&@-/):(; disease. My cause now is to raise Hope for Alzheimer's in several ways. Interested Boneyarders can assist me in several ways.

FOLLOW my blog. There's a button for that in the lower right hand corner. This currently reports on the Hope in Cindy's journey, with the underlying theme that even someone with advanced Alzheimer's can pursue dreams and live a vibrant life with enough support.
Most recent post: http://www.humanityhiker.com/of-dreams-and-dreamy-days

LIKE my Facebook page. Before the journey I was using this page to post articles about the Hope in lifestyle choices on Alzheimer's patients and caregivers. Admittedly I'm only reposting my blog articles right now because that is all I have time for on this journey, but I'll return to the former function when the journey is over. I also have a group page where I post nice pictures from the hike.
Fan page URL: http://www.facebook.com/humanityhiker
Group page search: 2014 Pacific Crest Trail Journey

DONATE to the Exercise for Brain Health Research Fund. This may be somewhat blasphemous on the Boneyard, but the University of Maryland is doing some good work in this regards and we are plugged in to that (other universities plugged into this particular line of research include Pitt, Wisconsin, Arizona and Harvard). As Dr. Carson Smith from UMd mentioned to me: "exercise is not patentable." Research into brain health does not receive the same level of funding as brain treatment with drugs. However, exercise is the only treatment shown to regenerate brain tissue. While that alone does not make you smarter or overcomes brain diseases, it's the one thing that provides the "raw material" to work with, something that provides Hope.
Donation site: http:// .com/umdbrainhealth

By Following my blog and Liking my Facebook page you will assist me with some fundraising ideas for the future. Such funds will continue to be used to support brain health research that focuses on lifestyle choices: exercise, diet, music, leisure, etc. Musicians might also want to check out my YouTube channel for a particular fundraising project, explained on the channel. That project will resume at the end of this journey.
YouTube project: http://www.youtube.com/humanityhiker

If you've arrived at this point thanks for your attention on this. Go Huskies!
Alzhiemers Dementia usually takes so long for those around the sufferer it's too late. I was a non believer that it caused death--not any more. My Wife sister's husband retired had a few car accidents (something he never had) doctors of all kinds saw him, lawyers saw him, replaced his knees and his hips--but no mention to the family he was not well.
A year ago he was walking around his closed community (closed for security nothing else) then began falling, then wearing diapers, then writing nasty messages on the doors and interior walls--went to a 12,000 per month nursing home and within 6 weeks was dead. It isn't fun for the spouse everyone thinks she or he could have should have done more--but they didn't live with it.
 
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diggerfoot

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Alzhiemers Dementia usually takes so long for those around the sufferer it's too late. I was a non believer that it caused death--not any more. My Wife sister's husband retired had a few car accidents (something he never had) doctors of all kinds saw him, lawyers saw him, replaced his knees and his hips--but no mention to the family he was not well.
A year ago he was walking around his closed community (closed for security nothing else) then began falling, then wearing diapers, then writing nasty messages on the doors and interior walls--went to a 12,000 per month nursing home and within 6 weeks was dead. It isn't fun for the spouse everyone thinks she or he could have should have done more--but they didn't live with it.

Cindy's relatives fault me for not knowing and starting her on medications sooner. After an initial flurry of examinations for her mental impairments we went once a year, starting the medications as soon as the diagnosis was made.

The relatives were critical of our walk across the country, though the results vindicated us, improving Cindy's health more than medications could. However, perhaps that also contributed to the delay of the diagnosis.

Meanwhile, the relatives had a "Cindy needs to be fixed" aura about them that would have her in tears after a gathering. Obviously, I felt the same, but without making her feel bad about herself. I recommend that anyone dealing with an Alzheimer's patient have them feel as normal as possible even as you strive to find what is wrong.

As you can tell from this, I don't plan to stay in contact with them once this is over.
 

HuskyNan

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I heard about the Music & Memory organization from an item on the evening news. I was so moved by the stories I sent my iPod nano to them. Will this work for everyone? I don't know but if it brings the Alzheimer's sufferer even one minute of joy , then I'm all for it.

 
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diggerfoot

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I heard about the Music & Memory organization from an item on the evening news. I was so moved by the stories I sent my iPod nano to them. Will this work for everyone? I don't know but if it brings the Alzheimer's sufferer even one minute of joy , then I'm all for it.



I bought a nano iPod and a speaker for Cindy to use during the hike. Her most frequent request is for Carole King's Tapestry.
 

BooRadley

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I bought a nano iPod and a speaker for Cindy to use during the hike. Her most frequent request is for Carole King's Tapestry.
I've been thinking about your wife, you, Southbranch, Meyers, Winlots, Kib, and so many other BY'ers that are in that part of our life where medical issues come into an unwelcome focus. To deal with my own medical 'troubles' over the last decade and I made it a part of my daily morning diet to begin my day by tapping one of my muses for inspiration and strength. This morning, Euterpe was front and center... So, I began my day with Caro Emerald singing "A night like this"

And yes, I know it's a bit quirky to begin a day with 'a night like this"... but that's what my muse ordered , so that's what I did... and besides, although I'm not sure why Caro's singing this song makes me so happy... it does... I hope it does the same for you all.



Music heals,
Boo
 

easttexastrash

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Digger, my heart goes out to you and your family. This is one of my biggest fears; seeing a family member suffer with this disease. And I know that my diabetes increases my own chances of developing dementia or Alzheimer's.

Take care and keep us posted on your journey.
 
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Can't tell you how sad this makes me when i hear a story like Diggers and Cindy's. My brother was diagnosed with dementia when he was 55 and the journey since has been a long , emotional process. There is a fantastic book written by Lisa Genova titled "Still Alice". If one wants to learn about the science and progression of the disease while getting a flavor for the potential impact on the victims loved ones then I would strongly recommend the read. Digger...keep the faith and remain positive.
 

diggerfoot

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We are down in Southern California, near the end of ou journey, when I came upon this: Husky Monument

Btw, can anyone record November games for me, men and women? We'll be back by December.
 
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Now that the first five years of our marriage were spent taking care of my Mom with Alzheimer's, the last years will be spent taking care of Cindy, with a stint of taking care of her Dad in between, I've had it with this $&@-/):(; disease. My cause now is to raise Hope for Alzheimer's in several ways. Interested Boneyarders can assist me in several ways.

I hear you, digger. I went straight from taking care of mom's Alzheimer's from 2006 through the last days of 2012 to taking care of what we thought was chemo fog from my wife's breast cancer to learning this March that it was actually early-onset Alzheimer's with a very confusing etiology. We're still coming to terms with it, and she hasn't wanted to do a bucket list, so we've limited our trips to her hometown (Cleveland) and to London, where she has friends and we could show our art-history major some museums.

Brigid has a bunch of serious foot problems dating way back, so we can't do any hiking, but it is great for your wife that she can.

FWIW, the most useful book I've read on the early and middle stages is "Learning to Speak Alzheimer's" by Joanne Koenig Coste. Your mileage may vary (and every patient is SO different) but that and Teepa Snow's free videos for the American Society on Aging (message me if you need the URLs or want to talk/blow off steam) were incredibly helpful.

I'll look into the UMd program. Another really good place is that does interesting research and gets very high ratings from charity watchdogs is the Fisher Center for Alzheimer's Research Foundation in New York.

Please give my and Brigid's best to Cindy.
 
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