Q: And your position is?
A: Alzheimer's is a health issue. It is about diagnosis and
treatment - just like diagnosis and treatment of arthritis and diabetes
- the earlier the better. Diagnosis is not hard and treatments do work.
Q: Is the new advocacy part of your treatment - and when you say "treatments" do you
mean lots of things other than medication?
A: Yes, I've spent many years as a health advocate and this new
advocacy gives me continuity and purpose and keeps the Alzheimer's at
bay. And, yes by "treatments" I mean lots more than medication.
Q: Let's come back to "treatments" after filling in some history. How did you discover that you had Alzheimer's?
A: Running a small, underfunded, but creative organization I became
frustrated when I couldn't remember names of my staff, couldn't find
the nouns I needed, and would start a sentence and then not remember
what I intended to say. I was angry, hostile, and sad at work and at
home. It was rough on Don.
Q: But, what got you thinking about Alzheimer's?
A: On her Christmas visit (2001) my daughter Olivia got concerned
when she noticed that I asked the same question several times in a row.
She called Don, and that got us started with various tests.
Q: Tests?
A: We did a basic physical exam and then an MRI. I didn't like the MRI but now I do MRIs as part of research.
Q: Lets come back to that.
A: Right, the next step was an examination by a neurologist. I
didn't like the neurologist at first because he spoke to Don rather
than to me. I now like him a lot.
Q: And?
A: As a result of his exam and his study of my MRI he suggested
that I might have vascular dementia. It was funny. After just putting a
name on the beast - even though it is an ugly name and turned out to be
the wrong name - I became much more calm and the anger, sadness, and
hostility left.
Q: Wow, what next?
A: Next came the full neuropsychological exam where they found more
cognitive impairment than could be explained by what looked like
infarcts on the MRI. To see if we could discover if it was Alzheimer's
we did a lumbar puncture - aka spinal tap.
Q: Was that nasty?
A: No, we made it a bit of a picnic. The results did show that it
was 95% certain that I had Alzheimer's. This was May of 2002. My
children came to visit and talked us into going to England - my
original home - in June. My son Orlando lived in London so we could
stay in his flat.
Q: Let's get back to your main theme. You said that diagnosis was not difficult.
A: Right, there was nothing hard about any of this. The hard part was knowing to seek a diagnosis.
Q: Do people avoid diagnosis because they fear the outcome?
A: I'm sure, and I can understand why. My first reaction was that
life looked bleak. I would have to leave my work. I couldn't imagine
what I'd do. Now that I know that treatments work I'm busy with all
kinds of things.
Q: What happened to change your outlook.
A: In October my organization had a big 25th year anniversary
celebration. It was sort of a culmination of my work there, and I knew
that I would retire at the end of November. My responsibilities as
executive director were essentially over. Also at the end October I
became a part of a buddy program.
Q: What's that?
A: It's a great program. First year medical students become buddies
with people like me who are in the early stage of Alzheimer's or a
similar form of dementia. We spend four hours each month through the
school year doing things together. My buddy Amy and I spent our time in
museums. I learned more about Alzheimer's as Amy and I talked about
medical school. I began to realize that there are lots of people with
early stage Alzheimer's and that there are lots of things which we can
do to live active and useful lives with Alzheimer's.
Q: What was the next step?
A: After I retired Don and I spent two weeks in Key West. I forgot all
about the job I'd just left. I started sketching and discovered that I
was quite good at it. Not long after we returned we joined an early stage group.
Q: Yes, I read about these groups.
A: Well now I met a bunch of people living with Alzheimer's and
began to recognize key issues. Naturally I wanted to start organizing
around these issues. Meanwhile, Don in his group was having the same
reaction. We had fun thrashing out these out these issues together, and
soon our Alzheimer's adventure became a positive part of our lives.
Q: So you started the organization?
A: There was one more step. I was interviewed for a TV feature on
the buddy program. This got my advocacy juices flowing full force. I
began to see how lucky I was to get the early diagnosis. I knew by then
that there were lots of things which we could do to slow the progress
of the Alzheimer's and lots of ways to work around the Alzheimer's.
And, I got up in arms about all the people who don't get early
diagnosis and don't get the chance that I have to keep the beast at
bay. It wasn't long, nor a big step, to starting our advocacy
organization.
Q: OK, you said several times that treatments work. What do you mean by treatments?
A: There are the medications of course. I'll leave discussion of these to experts. I will say that they are working for me.
Q: But by "treatments" you mean more than medications.
A: Yes, Don sees to it that our nutrition is consistent with what
the best research shows. That means lots of fish and good-for-you
veggies. I love it - I'm full of energy. It's lots of work for him, but
it's part of his contribution to our Alzheimer's adventure.
Q: There's more?
A: Walking. People from England like me love walking, so I get lots
of exercise that way. Don loves walking too - that's one reason we
decided that we could get along. The physical activity is known to be a
good weapon against Alzheimer's, and walking is especially good because
I'm always seeing interesting and new things and getting mental
exercise as well.
Q: Mental exercise?
A: My sketching is great mental exercise because I have to see my
subject, form my own ideas about it, and then get that on paper. This
can take several days, with some of the work away from the subject.
Also, looking deeply at things leads me to the library to read up on
them. I was sketching a Tang Dynasty image and ended up spending more
time reading about the Tang Dynasty than sketching. Often people
approach me when I'm sketching and ask how I can do that. I've come
close to saying, "well, first you have to have Alzheimer's."
Q: Do you have other projects?
A: I've been helping my friend Edna with her advocacy work on
school funding. She's in her 80's and still a force of nature. After
I'd been helping her for several months we had this amazing
conversation where we told each other that we each had Alzheimer's [it turns out that Edna doesn't have Alzheimer's]. I'm
also working with friends writing a history of our health advocacy as
original members of the Chicago Women's Liberation Union. My cousin Liz
and I are putting together a family history. I participate in CNADC
research which got me back in the MRI machine. And, I have a new
medical student buddy, who again shares many of my interests, so we'll
have lots of fun together.
Q: How can you do all of this with Alzheimer's?
A: With Alzheimer's I have lost some cognitive ability, but I have
lots of ability left, and I can work around the things which I can't
do. That's one of the things that activity does, one learns by doing
how to work around a problem, just like learning how to avoid using a
strained muscle. This is another reason why early diagnosis is so
important, because it gives me the chance to do these things which keep
the beast at bay.
Q: Which brings us back to the mission of Alzheimer's Spoken Here.
A: Clever us. I won't tire of pounding my fist and saying that we
must increase early diagnosis. Early diagnosis is not hard and
treatments do work. It's terrible that so many people are being robbed
of the opportunity for early diagnosis. It's not right and we must
change that.
[This session of the interview took place early in June of
2004.]
Q: You recently made a very strong statement about funding for Alzheimer's research. Can we include it here?
A: Sure, remember that it's my personal view and not the view of Alzheimer's Spoken Here, Inc. nor the web site. Here it is:
"Those of us who are living now with Alzheimer's know our destiny, and
thus we know - as only we can know - how unforgivably cruel it would be
to cause others to share that destiny because opportunities toward
conquering Alzheimer's which now await funding are not funded.
If funding for Alzheimer's research is not increased, then clinical
trials which are now ready to commence will not start and the cost in
human suffering - and the economic cost - will be huge, simply because
of the greatly increasing number of people about to enter the age where
the incidence of Alzheimer's is high.
It will be said that we can't provide this funding because of the need
to fight terrorists, but we can only fight terrorists by making
ourselves less hated - for example by conquering Alzheimer's. If we were
to fail to pursue the opportunities which we now have at hand toward
conquering Alzheimer's, would we deserve to be loved?
It will be said that we can't increase funding because of our national
debt, but the national debt can be reduced by conquering Alzheimer's. If
we fail to invest just a tiny bit toward conquering Alzheimer's, then
the huge cost of caring for the growing numbers of people about to get
Alzheimer's will make our current debt look like the good old days.
It will be said that asking for increase in funding for Alzheimer's is
not appropriate when all federal funding is inadequate, but there are
few cases where so much good can be done for so little funding, and so
much disaster surely awaits for lack of that little funding."
Q: Can we also include your blast of the Medicare prescription drug benefit?
A: Sure, with the same qualification:
"Except for ideologues who can't tell their elbow from a hole in the
ground, everyone knows that all the legislation will do is to turn tax
dollars into campaign contributions from drug companies to their friends.
We're outraged that we have to support a bad bill in order to start an
experiment, perhaps lasting five years, which will show that the
legislation doesn't work, so that maybe good legislation might then be
passed. If we didn't support the bad legislation we might not get to do
this nasty experiment for another ten years - putting any possible good
legislation 15 years in the future.
It could be different. We could use reliable knowledge and intelligence
rather than ideology. Elected officials could promote the general
welfare (as they swear to do) rather than just grub campaign
contributions. But, our world is not different - yet."
Q: Do you want to blast anything else?
A: Yes, I want to blast people who patronize me. The most hurtful
thing about having Alzheimer's is knowing that I can't do some things
which I once could - so when people patronize me they rub salt in that
wound. When I need help I'll ask for it.
Q: More?
A: OK, stress amplifies the symptoms of Alzheimer's, so when I've tried
to work with friends on projects and they make the process too
stressful I have to stay away. I lose and they lose.
Q: Can we end this session on a positive note?
A: There's lots of that - those of us living with Alzheimer's have a
very keen sense of what's important and what's not, which leads us to
find no end of simple things to be happy about. I recommend this to everyone.
Q: So again, what's next?
A: I don't know. Ask me again later.
Q: OK, let's do that.
A: You know where to find me. I'll also try to answer any questions which are sent by anyone by email to me.
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