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I Have Alzheimer’s or Another Dementia
Doing Everything I Can To Help Myself
I am also type-A (probably
excessively so), and highly motivated to do all I can to retain my function and
get my life back. This likely plays into
why I approach my diagnosis the way in which I do. I have also had a life where I have needed to
overcome, and did overcome, many things that others told me that I would have
to just live with. Like when I was
losing my ability to walk, and my left leg just dragged and I had a horrible scissor gait, and although I used
(gratefully) a walker, I really needed a wheelchair. But I couldn't accept that for myself. It might be that I lose my ability to
walk...but it wouldn't be because I didn't try everything in my power to
prevent that. Now, many years
later...after years of physical therapy and self work (dry brushed my leg, therapeutic massages, acupuncture, you name it), I walk well enough that
an outsider would not have any clue how far I have come. So I am no stranger to hard work and I am no stranger to finding ways when others
think it is impossible. But always I am
surprised by the negativity some people have when you try to do something they think you can not or should not be able to do.
Many are so willing to
sell us short, and no where is that more true than after you get diagnosed with
dementia. Doctors suddenly want to hear
from your caregivers (even if you don't have one), rather than you. You are suddenly not seen as being human, or
as in control of your life as you were just a minute ago. But I am still me, and I am still very much
the driver of my own life. And I still
want to do all I can to save my brain. My brain will likely ultimately fail
me...but it will not fail me for lack of my efforts to save it.
So I am stage 5 now, and I
have been struggling against the slow and steady, progressive decline for the
last 6 years. Back then I did not know
what it was, nor was it on any of my doctors or medical providers radar. All I knew was that I was struggling with
With each successive brain
loss (as I think of it), it would start with certain things becoming harder and
harder to do. Like I had to struggle to
bring it into my mind's focus, but still could with effort. Then it would require more and more effort,
but was still doable. I knew what I was
losing, because it was what I was struggling with. At some point I would need help with the
tasks. And despite having workers that
are there to help me, despite my being very articulate about what I needed, no
one seemed to either understand how to help or be willing to pick up the
ball. So eventually I would create some
sort of work-around to help me complete the task. Whether it was a sign, or a set of instructions. The challenge for me, is that it takes my
brain a very long while to sort out a work-a-round.
The work-a-rounds support me like a paid worker would, so in essence I
have become my own caregiver.
I eat well, mostly salmon,
fruit, nut butters, avocados...and my one indulgent pleasure, green tea. I don't eat much, I don't digest much. I can no longer figure out how to sort out my
digestive issues...and have forgiven myself for that, as well as forgiven my doctors for not knowing either. I take probiotics and
digestive enzymes, but they do not help much.
I take a taurine supplement once a week, because I no longer make it
well. I have made peace with my
diet...and with my inability to understand what else to do about it.
I exercise regularly. I do a daily routine that is a mixture of
yoga poses and physical therapy exercises and strengthening exercises. As well, I walk the dog an average of 4x a week (now that
I have a diagnosis of Myasthenia Gravis and a medication that really helps
improve my strength and ability to walk). When I can, I go to the Courage Center to continue my work in their gym and heated pool.
I meditate daily, often
more than once a day. As well as do some
semi-Buddhist practices, like Thich Nhat Hanh's "smile" practice, that I
do in the morning to help me start my day in the right frame of mind. Or being "mindful" of various
tasks, like walking or breathing.
I socialize as much as I
can. I found two great organizations
that offer weekly online video support groups by and for people with dementia
that has really helped me understand that what I am experiencing is normal, and
given me people to care about and follow their stories and progression. As well, I do a bi-weekly holistic support
group with people with chronic illness, which is the only place that I am
considered still me even after diagnosis and has been really great for me.
I am also starting to
participate in advocacy work which is something I have done throughout my life,
and is so needed...and there is just something about being part of the cog in
something that is needed that "pulls" you forward in a way that I no
longer have words for. As I started this
work, I noticed that the other people doing it were achieving great benefits
cognitively from this work, and I am excited to see if I experience the
same. What a nice side-effect, in my
I see my doctors
regularly, and I have a small team of people who help me meet my needs. They, of course, always push for me to go
into assisted living...and while some days I think that would be very nice, I
am not ready to throw in the towel on my life just yet, and (thankfully) they support me in staying in my home. In some ways, I consider myself (gratefully) well supported, in other ways I feel very much on my own and that they look to me to guide them.
I have signs, notebooks,
and charts that get me through my most important tasks...and I find a comfort
in my words, and my loving support of myself that carry me through my days.
I still drive (safely and without incident), I still pay the bills and manage the house, I still manage my meds (with great struggle), I still grocery shop, and I am still able to care for my mom...which others tell me is amazing. But, to me, these are the most vital tasks. All other tasks, I am largely unable to do. For some of them, like daily cares, I have supports for the most vital of the tasks, and just don't do the rest. I can still cook, but other than salmon, I don't tend to cook.
I wish everyone well.