I Keep Falling

Front view of a Hoyer lift, used for lifting p...
Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)

“Sometimes I
wish for falling
Wish for the
release
Wish for
falling through the air
To give me
some relief
Because
falling’s not the problem
When I’m
falling I’m in peace
It’s only when
I hit the ground
It causes all
the grief”

― Florence
Welch

The type of
wheelchair transfers I do are called “stand – pivot.” The reason that I can
stand at all is because of the spasticity in my legs and Kim’s firm grip on the
back of my pants, not because of actual standing ability. During this type of
transfer there is a critical maneuver where I rotate 180° and land at my
destination. It works pretty well, almost all the time.
But last
Friday morning my legs lost their spasticity halfway through the pivot, and I
started crumpling to the floor in slow motion. My legs were stuck in an awkward
and painful position under my full body weight. “Pull me forward. Pull me
forward!” I implored Kim. She was able to do that and I had a semi-smooth
landing, face down on the carpeted floor.
Kim rolled me
over and placed pillows under my head and under my knees. I was comfortable. We
did the usual roll call of body parts and found that, once again, I had fallen
without significant injury. She then went out into the garage to gather up the
various pieces of our portable Hoyer lift. This would be the second time we had
used this lift in the last year to raise me off the floor.
Did I mention
that my daughter and her longtime boyfriend have moved into our house? There’s
probably enough interesting material on this subject for a future blog post.
Anyway, Nick heard Kim making noise while gathering up the Hoyer lift
components, so he emerged from their luxury accommodations at the back of the
house (which I fear are so cushy that they will never leave) so that he could
help get me off the floor. The Hoyer lift is barely adequate for transferring a
disabled person from a wheelchair to a bed, or vice versa. But this lift is not
set up well for picking a large person off the floor. Therefore, Nick had to
support my head and back while Kim operated the lift. Before long I was back in
my wheelchair, only slightly battered and bruised from the ordeal.
Each of my
transfers is now a near fall, except
for the ones that are actual falls. I
know that you are tired of reading about this sort of thing, and I am tired of
writing about it, not to mention living through it. I realize that there are
several choices for safer transfers. Instead of the stand – pivot, we can do
the squat – pivot. Kim has been trained on this procedure. We can also use a
slide board. I ordered one and it arrived last week. But these
are merely incremental improvements. I’m inclined to make a dramatic improvement.
What if there was a system that provided much safer transfers and actually
allowed me to accomplish these transfers independently? How cool would that be?
Well, there is such a system, and I’m trying to get my hands on one.
Stay tuned to
this channel for further updates….
Here’s one
parting quote on the subject of falling, by a man who ought to know.
“The greatest
glory in living lies not in never falling, but in rising every time we fall.”  ― Nelson
Mandela
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An Argument from Love

“If you refuse
to do it yourself, I’ll do it for you,” I threatened.
“Oh no you
won’t!” Kim replied.
What had begun
as a legitimate debate soon deteriorated into a test of wills.
Last week Kim
received a letter from our primary care physician indicating that she was due
for her annual physical. I informed Kim of the correspondence, and she was
rather dismissive. “Yeah, whatever. I’ll make an appointment when they refuse to fill my prescriptions.” Yes, our doctor has been known to hold our
prescriptions hostage if we don’t come in for a physical.
Kim’s attitude
toward these annual checkups is not an uncommon one. Like so many people, she has
no pressing health problems (that we know of) and is a very busy person. My
understanding is that annual checkups are not as much fun for women as for men.
I’ve seen the stirrups. Nevertheless, I just couldn’t let it go.
I argued that
physical examinations are even more important as we grow older (perhaps an ill-advised tactic). I brought the letter over to her, and while
channeling my inner male chauvinist (another ill-advised tactic) I demanded,
“Call the doctor’s office right now
and make an appointment.” I sat there, alternately staring down at the letter
and up at her eyes, so as to indicate my resolve.
Unafraid,
undaunted, and unimpressed, Kim pushed the letter back toward me and said, “No.
I’ll do it when I feel like it.”
I slid the note back toward her and made that threat, “If you refuse to
do it yourself, I’ll do it for you.”
“Oh no you
won’t!”
“Try me.”
“It doesn’t
matter, because the doctor’s office will never let you.”
“I guess we’ll
find out, won’t we?”
I did it. I
contacted the doctor’s office and they allowed me to make an appointment
for Kim, no questions asked. I felt like the secretary to an important person.
My important
person became steaming mad. “What you just did is not okay.”
Kim determined that my punishment was
approximately one hour of the silent treatment. The tension in the room was
palpable, but eventually it dissipated. Since that time we have made our
respective cases to several impartial people, but few are foolish enough to
choose a side. We each stand by our original positions.
As I began writing
this account of the confrontation, I had to ask myself why I felt so strongly
that Kim should make an appointment sooner rather than later. As I said, I
didn’t suspect that she had any particular, underlying medical problem. That
wasn’t it. Of course I have immense love and compassion for my wife. That was
obviously a major factor. Given my own medical situation, I’m more aware of the
effect that health problems can have on a person’s life, and the importance of
frequent and open communication with your medical team. I go to these
appointments with a long list of issues, many of which are addressed at least
to some extent during the checkup. These experiences definitely influenced my
desire to have Kim hurry up and schedule her annual physical.
But if Kim
wasn’t both my wife and my caregiver, and I didn’t depend on her so completely
for my personal well-being, would I have been so insistent? In the heat of the
argument I truly felt that I occupied the moral and altruistic high ground. But
was I also motivated by self-preservation, at least a little?
Like so many
arguments, this one was a mosaic of legitimate concerns and questionable
tactics. There were plain statements and hidden agendas, genuine concerns and
shameless posturing. Even though intentions were good, communications were
flawed. In the end, however, this was above all an argument from love, and
that’s the most important thing.
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Potpourri

It’s becoming more and more difficult for me to don my winter coat, even with assistance, especially the part where I try to stuff my arms into the sleeves. So I bit the bullet and ordered this ridiculously expensive winter Cape, which has no sleeves. Once I try it out, I’ll give you a review (picture on right). Who else wears a cape: Batman, Superman, the magician at your child’s birthday party.

Marie Suszynski at Everyday Health published a column called Nine MS Myths, Busted. Myth 2, “Everyone with MS Ends up Severely Disabled”, and myth 9, “Everyone with MS Will Quickly and Steadily Get Worse,” are sadly ironic for me. But the rest of the items are pretty sound. Thanks to Stu’s Views & M.S. News for this link.

Apple’s iPhone has an abundance of accessibility features. Click here for a summary.  I also came across this article in USA Today a couple of days ago: Five Things You Had No Idea Your IPhone Could Do. I’m going to try #1, and I’ve already started using #3. (sorry Al)

Maintenance and parts support for the iBot will expire on March 31. I know people are still working on saving the iBot, and I have my fingers crossed. I wasn’t aware that Dean Kamen brought the iBot on the Colbert Report way back in 2006. Watch this clip – very entertaining. Thanks to Cynthia and Charles Riordan for the link.

Here’s a TED talk that everyone with a brain disease, like MS, or anyone who knows someone with a brain disease should watch. Siddharthan Chandran: Can the Damaged Brain Repair Itself? I have little doubt that medical researchers will find a way to repair the damage done by neurological diseases, but will it be soon enough for people like me?

Finally, I wanted to let you know that I have been asked to write another “Men with MS” column in the magazine MS Focus. It will be in the spring issue, and I’ll let you know when it comes out.

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