We need your help!

[DON MOYER]

Five years ago we started Alzheimer's Spoken Here, Inc as an Illinois not-for-profit corporation. Alzheimer's Spoken Here, Inc.now has $10,000 from contributions in the bank.

So, we've commissioned a thorough literature search to answer these questions:

What do we know about things which persons living with Alzheimer's (and similar conditions) can do to enrich their lives?

Can these life enriching things be useful for persons living at home with Alzheimer's?

Can information technologies be used to bring these life enriching things to persons living at home with Alzheimer's?

The principle investigator is a seasoned geriatric sociologist working on related Alzheimer's issues. She is aided by a doctoral student also working on related Alzheimer's issues. Both are at the University of Illinois, Chicago.

Examples of life enriching activities included in the literature search are: Advocacy, Art, Dance, Drama, Family Stories Writing, Gardens, Journaling, Mental Gymnastics, Music, Poetry, Reading Aloud, Spirituality, Walking.

Usually the test of efficacy of such activities is some measure of cognitive ability, but there is more to life than this. So, we are soliciting other tests of efficacy as well. We want to broaden the approach of the Alzheimer's establishment.

So far we've had these suggestions for indications of efficacy: It's fun, It gives me a more positive outlook, It is calming, It is thought provoking, It brings energy and spirit to my life, It quiets my mind.

Please add your thoughts. Thanks. Jenny and Don

[DON MOYER]

We got these thoughtful replies by email:

Don,

Thank you for your effort in this! Here are my thoughts. Hope they are
of some help.

I find music both calming & thought provoking. It inspires my meditations & brings me great peace.

My daily enjoyment of art is somewhat limited in scope but real none the less. I have art calendars in every room & a painting, & some art posters & drawings
cards & photo's & a mask. Those & my art books ,since I don't live in a city with a museum are
my sustenance. Every time a visitor or my grandchildren enter, they look around at the walls....Quite honestly they are my companions, since I live alone and bring energy & spirit to my dwelling.

One art you did not mention, but I will take the liberty to add, in case it is useful, is literature/poetry. Especially, when I am awakened in the middle of the
night in discomfort as a new migraine is about to begin, I find that the best way way to occupy my mind & keep it from from racing during discomfort is to read
literature or poetry.I'm currently re-reading Jane Austen's Emma. &. a page or so a day of Dante's Inferno

Best of luck in this wonderful effort!

===


Hi,
You have taken on a challenge. Personally, I found that as my active every day function side of my brain closed down, my other side holding more of the artistic, spiritual, intuition, physic abilities became stronger. Whether there was actually an increase in strengh, or if it became more dominate because of the loss of dominance on the
other half I am not sure. But what I found is that I HAD to respect these new abilities. I could push myself to function on my daily level, try to achieve the things I had lost; but then I would be driven to sit and paint, or create a poem, or write a story for my
grand children. Anything that used this new dominate side of my brain. And in doing so, I would take a tiny step in healing. A feeling of great accomplishment and worth. So, I think they might be missing the picture - it is not the activity that is making the difference - but the difference in our brain that is now increasing
the importance of the activity. My sister uses photography. Others have commented on how the world has taken on a new look.

Music might be considered seperate, unless you are a creator of music. The body responds to music in a beneficial, stress reducing, memory recalling, rebalancing way. It can even affect the vibrational level of the cells, leading to healing in a very micro way.

Hard to measure or note its effectivness. Other than - I feel better when I ......
Thanks
Chris

===

Don and Jenny,

Music has become a conscious and committed central
focus of my life since diagnosis. I've made a
commitment to continuing my weekly or bi-weekly
mandolin lessons that I started about three years
after my first symptoms and seeing a neurologist about
them, yet a full three years before eventually getting
a diagnois. Marilyn and I also joined a chorus about
two years before diagnosis, and we've continued that
together now for four years, and still going. Chorus
helped me get through my last two years of struggling
with working. Every couple of months we start a new
chorus session, learn three new songs, and perform
before an audience, where I often take a solo bit, or
we sometimes do a duet performance together. Also
since diagnosis, I've been attending mandolin and
guitar camps, participating in regular hoots and jams
with musical friends, learning new songs, going to
concerts, and the like. It provides a wonderful
source of joy and sense of accomplishment. I enjoy
taking guitar and mandolin classes, making music with
others, or just sitting alone for hours learning or
developing a new tune to play.

The value lies, I believe, in the frequent experience
of creative self-expression - the right-brain activity
thing. I hope everyone on our road will find their
own outlet for expressing of their talents and inner
feelings. I think that music, art, poetry, prose,
acting, dance can all provide the same creative outlet
and benefit.

I hold my musical self-expression, alongside regular
aerobic exercise, connection with my wife and
children, meditation, heathy diet, and support groups
as one of the best things I can do for me to keep
myself going and mitigate the progression of
Alzheimer's.

Good luck with your project. I hope it will help
others discover their passion and means of expressing
themselves.

Jay Smith

[Don Hayen]

I can't help but believe that writing ... creating stories and ideas ... is not helpful to those of us with Alzheimer's. I strongly endorse all the previous commentators regarding creativity being helpful.

Don Hayen

[Ted VanLandingham]

I enjoy spinning - that is, on a spinning wheel spinning various fibers into yarn. It is very relaxing, and also creates a product (yarn) that can be used to create any number of useful things by knitters and weavers.

While I do not knit, I do weave, and this is also a very soothing activity, and, like spinning, the outcome is a useful item. Both spinning and weaving are repetitive, which helps me retain the ability to do them. It also helps that I have been spinning and weaving for many years, so the process is pretty well ingrained within my brain.

[Joseph Potocny]

Don,

Unlike those that have answered I personally find for me, that solitude and quiet time are my best allies. It gives me the time to use my mind to wander, to remember and to think ahead. The items mentioned I am sure all are of benefit to one degree or another. I think alot about my Lord and spirituality and going home and enjoy various forms of music. My next to biggest enjoyment in decorating (interior). It requires that quiet time for me. Too much going on drives me to the wall and back, do not handle it well. Now that the wonders of medicine have finally diagnosed me with Ahlzeimers, Frontal Lobe, Bi-Polar and neuropathic Parkinsons, (PET SCAN CONFIRMED). They told me stop seeing doctors enjoy the time you have left, unless of course I break a leg, and actually collectively decided the meds were of no value to ME, so I do not take them. I think each of us finds comfort and help and direction in many different things, what motivates you I believe is what you should do, even if it is just taking out the garbage for the day as a set chore to complete. For me simplicity seems to be the best for me. The comfort of my wifes' companionship heals alot of the confussion. My grandkids and kids as much as I love them, I just cannot handle them, to much for this old fart. Thanks for being out there for me and others.
Joe

[DON MOYER]

Here are two more comments which we got by email. After Lisa's post I've added a link to some major new work on stress and AD.

===

How about subjective ratings of mood?

Physiological measures of wellbeing/relaxation versus stress/anxiety, like heart rate, respiratory rate, sweat in palms of hands---and measures of these alone and then while trying to do a mildly stressful activity.

Lisa
Lisa Genova, Ph.D.
www.StillAlice.com
BLOG http://actionalz.org/blog

===

stress link

===

You should get in touch with Dr. Cameron Camp. I have read articles he's written and have a book, "Montessori-Based Activities for Persons with Dementia". He's probably a wealth of information.

[Ted VanLandingham]

Don:

I appreciate your steadfast work to address Alzheimer's Disease issues - you have made a difference, and I know that you will geometrically increase your impact on the fight to alleviate and finally cure this disease.

I find that computers offer a lot to provide mental stimulation. There are a wide variety of games in terms of both subject matter and difficulty which can provide pleasure, mental stimulation, and the ability to decreases difficultuy levels to accommodate declining mental ability, e.g. in my case, Sid Meier's Civilization IV - but there are many from simple card games, e.g. hearts, war, etc to strategy games like the one I mentioned above. Plus many of the games are not time driven so you have all the time you want to finish your turn.

I also like repetitive activities, like spinning and weaving - it provides entertainment, and, unlike games, you are creating an end product that is useful.

Thanks again for your vigorous advocacy for people like me and our families.

Ted Van

[Anne Basting]

Don and Jenny -
this is exactly what we're up to at UWM's CAC. We're creating a website called Beyond Bingo, which will have 40 projects (not activities) designed for people with memory loss living at home. These will be created by a team of artists from a wide range of fields, and vetted by people with memory loss. We've also been doing research on creative storytelling, visual art, dance, photography, and healing gardens...
we should talk!
Anne

[Ted VanLandingham]

I find spinning on a spinning wheel to be a soothing activity and one which produces a useful product, i.e. yarn to knit or weave with. It is repetitive, tactile, and something with few steps to remember. I also weave, but as the Alzheimer's progresses, I have more trouble warping the loom and keeping up with more intricate patterns. I still weave, but not as often and I now I tend to use more basic weaving patterns.

I also play computer games, which exercises my mind and memory. The main game I play is Sid Meier's Civilization IV. This is a complicated game, but I have been playing it since 1992 (when CIV I was introduced) so I am somewhat "hard-wired" as to the game and how it works. I admit, I am not as sharp in my playing, but I still enjoy the process.

I also like to read, but I am having more trouble keeping up with more complicated stories, and, as a result, I am not reading as much as I once did - but, I am still reading, anyway.

I may not be as sharp as I once was in these activities, but I can still do them and enjoy the game/activity as well as exercising my mind/memory to some degree. I admit, I am sometimes frustrated in the computer games when I can see that my ability to play the game is waning, but the game is still fun. and it does exercise my mind.

I also do rosaries by memory, which is something that is pretty well ingrained in my mind - I also think that God will let me retain the memory to recite them without having to refer to printed text. This is very fulfilling to me and always soothes me.