Hi, gang!
I'm new to KosAbility,
and I'm running late,
so I didn't take time
to read any past
KosAbility diaries,
so if I break any traditions,
sorry.
I've been posting for
The Grieving Room
for awhile,
so I hope I have a feel for group diaries,
in which I get a discussion started,
and,
often,
some of the comments
are at least equal to the diary.
Feel free to outdo me.
But,
now,
let's get started.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I was married,
for 30 years,
to a woman with muscular dystrophy,
congenital muscular dystrophy,
to be specific,
if I recall correctly what the doctors said.
She had two brothers
with the same disability,
an older brother,
David,
and a younger brother,
Jeff.
She also had two sisters
who did not have muscular dystrophy,
Sandy,
the oldest of the five,
and Shelly,
the next to youngest,
between Pam and Jeff.
Pam was the middle child of the five.
Sandy,
David,
Pam,
Shelly,
Jeff.
Without consulting any doctors,
it was clear to anyone who ever saw all three of the disabled ones
that they all had the same disorder.
None of them could ever sit up or walk.
In Pam's baby book,
under baby's first step,
the page is blank.
They all had bad posture in their wheelchairs,
with very crooked spinal columns.
In other words,
they were not able to hold themselves
in a desirable position.
David had the best posture,
and he used a kind of corset
for many years,
to sit up straight.
But none of them could walk,
feed themselves,
use their hands for anything useful,
or even speak clearly.
If you were close family or friend,
you had to wipe their asses
and pick their noses for them.
You can pick your friends,
you can pick your nose,
and you can pick your friend's nose,
with a q-tip
and a kleenex.
By the way,
if you know anything about genetics,
it's blindingly obvious
that their parents
both had a certain recessive gene,
(or maybe combination of genes?)
But their parents,
my in-laws,
were always deeply insulted by that idea,
as if the doctors were accusing them
of practicing the incest of close cousins.
They are from the same large group of Germans
who went to Russia 200 years ago,
and to Hays, Kansas 140 years ago.
They are called the Volga Germans.
They are Catholics,
not Lutherans.
Look them up.
By the way,
I just now looked at the list of diseases
under the umbrella term of
muscular dystrophy,
as listed at the
Muscular Dystrophy Association's website.
Congenital muscular dystrophy was on the list,
that's why I put it in the title,
even though I'm relying on memories
of a few words from a few doctors,
many years ago.
It's an odd term,
maybe a catch-all term.
Please understand,
I'm not a doctor or a nurse;
Nurse Kelley might clear up,
if she can,
any confusion I create.
But I want to describe the disease
of my wife and her brothers
in the way I understood it,
ever since Pam and I went to
The University of Kansas Medical center,
in Kansas City,
for a set of tests,
many years ago.
Most kinds of muscular dystrophy
are diseases
that make the muscles,
all or many of the muscles,
all over the body,
gradually weaker,
with time,
until the person can't breathe well enough
to fight off colds and such,
and they die of pneumonia,
in the case of duchennes, (misspelled, prolly)
for example,
very young.
Pam and her brothers had,
not a disease that made their muscles gradually weaker,
but rather,
a birth defect in the muscle fiber.
The details of this next sentence may not be correct,
but use it as an example,
and maybe Nurse Kelley can fill in the correct details:
If, for example,
your body has both smooth muscle,
such as your heart and your tongue,
and striated muscle,
in your arms and legs and all over.
Suppose the striated muscle comes in short and long strand types.
I'm remembering this from many years ago,
so it may not be technically correct,
but on to my point:
If you have short in place of long,
or vice versa,
the muscle fiber itself is defective.
They told me something like this,
after Pam tested normal in many ways,
but the muscle biopsy,
examining a small sample of Pam's muscle,
cut from her leg,
examining that sample
under a microscope,
that biopsy
told them
the muscle fiber itself is not normal.
So,
the signals from the brain are normal,
but the muscle is not normal,
and cannot respond well.
So,
Pam and her brothers had feeling everywhere,
not like those with spinal chord injuries.
Their brains were normal,
not like those with cerebral palsy.
By the way,
Pam and I were members of one or two
organizations
of and for people with disabilities,
there in Hays, Kansas,
for years,
and we got to know a few people
with other disabilities.
I learned to recognize,
and maybe many of you are the same,
but I can tell,
from a distance,
across a big room,
whether a person in a wheelchair is disabled by
spinal chord injury,
(one hand laid flat on the armrest,
the other hand working a joystick,
and a nice headrest)
cerebral palsy,
(wavering and wiggling of arms and legs and neck)
or amputation
(missing one or more legs or feet).
It's not so easy to spot someone with multiple sclerosis,
except that you see none of the above,
and it's a middle aged woman.
Ironically,
I don't know how to recognize folks with muscular dystrophy from a distance.
We would all recgnize Stephen Hawking,
cuz he's famous,
and we've all seen pictures.
By the way,
Stephen Hawking's disease
is listed under motor neuron diseases
at the MDA site.
So,
if we see someone who looks disabled
in a way similar to Stephen Hawking,
we might have a clue.
Otherwise,
I suppose the problem is that there are so many kinds of MD,
and,
most folks we see out and around
have one of the other conditions I described above.
For that reason,
it may be wiser to send money to
the Children's Miracle Network,
rather than the labor day telethon.
Of course you could do both.
Myself,
I help poor disabled folks I know personally.
Like me.
And Tonia,
and Bob,
and Bev,
and Lori.
I'd tell you what I did just this week,
but you'd accuse me of bragging.
Alright,
I feel like I've got a good enough diary,
if I needed to quit now,
so I can relax.
But,
if you have time to read,
I have a lot more to say.
I learned a lot,
in 30 years,
not about medical information
about MD,
but about what it takes to care for someone
who is as disabled as Pam was.
The following information
might be useful,
whether you are involved with
any of the disabilities I mentioned above,
anything that includes a severe mobility impairment.
First,
be realistic about how long folks will live.
Severe disabilities often shorten lives,
a lot.
Pam died at age 51,
her brother Jeff died at age 44,
and David at age 59.
I think all three died of pneumonia,
the disease that kills those who can't breath deeply.
I'm very healthy,
and was born in 1955,
Pam in 1956,
so,
if you're getting involved,
as I was,
with someone about your own age,
you will not grow old together.
Not likely.
Keep that in mind.
Focusing on my grief
brings out another issue,
not central to this diary,
but a very important point to make
here at KosAbility,
or anywhere the topic of
folks with disabilities
is discussed.
None of us is superman or wonderwoman,
so we all have our limitations,
and,
depending on where you care to draw a line
in the shades of gray abilities
and gray disabilities,
depending on where you feel you should draw those lines,
it would be easy to make the argument
that everyone is clearly very disabled,
but with different skill sets,
and so we fuction in teams.
I am mentally ill,
but physically healthy and strong;
Pam was mentally normal,
but physically disabled,
so we made a good team.
She made normal decisions
on how we should live,
and I worked hard,
physically,
to bring home money,
and take care of her,
wipe her ass
and pick her nose.
Remember,
you can pick your friends,
and your friend's nose,
with a q-tip.
By the way,
my mental illness is a mild bi-polar condition.
I don't need any meds,
but sometimes my widower's grief
starts a brief episode of depression.
When that happens,
I take my mother's advice,
I sit down and I eat.
My mother died in 1999,
but when I was a small child,
in the early sixties,
I would come in tired and hungry and crying my eyes out,
because someone hurt my feelings,
and I couldn't stand it.
My mother said,
you're tired and you're hungry,
sit down and eat.
So,
when I pulled out my old cassette tapes,
tapes that Pam had picked out,
back when folks were buying cassettes,
I pulled out those old tapes,
just before starting this diary,
and I cried and cried,
I'm so fucking insane and grief struck...
Anyway,
as I was crying,
I was making sandwiches.....
I feel much better now.
I wrote all that to make the point,
we are all disabled,
or at least I certainly am.
So,
let's work together in a team;
I wrote the diary,
you read it,
and you mellow out the edges
of the diary
with more sensible comments.
Working together,
we can have a good time.
By the way,
I advise you to visit
Black Kos Music: Late Night in the Justice Department.
There,
amongst the musicians and song writers
you may meet some folks who are mentally ill
in ways similar to myself.
My particular mix of obsessive compulsive personality disorder
and bi-polar,
and almost autistic,
if you use the old term,
idiot savant,
this mix seems similar
to other artists.
I feel I am similar to
John Prine,
Don Mclean,
Jim Croce,
and Gordon Lightfoot.
And one of the greatest sorrows of my life
is that I'll never get to meet John Denver,
and give him a hug.
Maybe I could meet Cyndi Lauper,
and give her a hug.
I cry when I hear,
or when I sing,
True Colors.
Anyway,
all that was to give you a flavor
of my mental illness,
and to let you see
that it's a big part
of why I write as I do.
Okay,
if you have any more endurance,
I have more for you:
I still get things in the mail
relating to Pam,
and her needs.
I just got an envelope
full of cards,
each card to be mailed in
to find out more about products
for folks with disabilities.
Let me describe some of them:
For only $15.95,
a book,
Enabling Romance;
A Guide to Love, Sex, and Relationships
for People with Disabilities
(and the People who Care About Them)
I wonder if that book has the advice I gave above about life spans.
$9.95
Kids on Wheels
The first book of its kind ever published
"Go-Anywhere"
(potty) chairs
"For home and on-the-road; When ya Gotta Go, It'll Go With Ya!"
ProBed
automated body rotation bed
(Pam didn't need turned,
cuz she could squirm a little if she was sore in a spot,
plus she was fat,
and therefore well padded.
I often got compliments
on her lack of bed sores.
I think those with spinal chord injuries really need this, though.
That's how Christopher Reeves died, I heard, from an infected bed sore or butt sore from sitting up. It's a serious issue. Ask Nurse Kelley.)
The Original Transfer Master Adjustable Bed
This would have been ideal for Pam and I.
We fought hard over this issue,
in the last years of her life.
It's a hospital bed,
plain and simple,
but without rails.
The big deal is that with this bed,
I could have gotten Pam comfy every night,
so much more easily
than the way she insisted.
She forced me to use a foam wedge
under her upper torso.
As she gained weight,
it got harder and harder to get the wedge under her.
I had fits about this.
She won that argument;
she died before she gave in.
More from the card;
A Dual King with the Original Transfer Master
is the perfect approach for a couple
to accommodate the requirements of one individual,
and also serve the relationship needs of both
in a desirable fashion.
This is a big deal,
and maybe Pam refused a hospital bed
because she never saw this ad,
and assumed we would be separated by rails,
or rails plus distance.
The ad shows the hospital bed jammed next to a twin bed,
set up to be the same height.
Aren't those Craftmatic in the TV ads
the same thing?
Anyway.
Permobil
Pressure Relief
Redefined
A picture of a power reclining seat,
for mounting on a power wheelchair base.
Redman
Chief Black Hawk
Edition
Power Chair
Twelve small pictures at the bottom,
showing a woman in twelve positions,
her body placed in those postions
by the machinery
on the wheelchair.
The three main positions are,
sitting,
lying flat,
and standing up.
Strap in and stand up.
I saw one like this on the TV show,
Ugly Betty.
Quantum
Life Beyond Limits
Picture of a man with no legs,
in a nice power chair,
in camo and face shield,
playing paint ball combat simulation games.
Hoveround
You've seen them on TV.
Okay,
now we get to something
that would have allowed Pam
to use her power chair.
We had a big Ford van
with a hydraulic lift,
but as Pam gained weight,
there came a time
when the weight of Pam
plus the power chair
was too much for the lift to lift.
Here's the solution:
Freedom Motors
2010 Honda Element
w/FMI X-WAV Conversion
The picture shows a ramp coming out the side of the vehicle.
Yes.
Another:
Toyota Sienna Kneel Van
The ramp is at the back,
with the vehicle modidfied.
Ams Vans Inc.
Chrysler, Dodge, & VW Available!
Any of these would have worked for Pam.
Bladder Control Products All Sizes!
Bev buys Depends.
Did you know that Kansas Medicaid does not pay for them?
Reduce UTI's with the Clinically Proven Rusch Introducer Tip.
I got pretty good at inserting a urinary catheter in Pam.
I do not recall her having any urinary tract infections in the last years of her life,
when I was changing her catheter on a regular basis.
New Mobility Magazine
America's leading Magazine for Wheelchair Users.
Life. Beyond Wheels.
Independence Expo
Long Island, NY
Saturday & Sunday, June 25th & 26th
Able to Travel
is a full service accredited travel agency
that understands the needs of wheelchair users
and all individuals with disabilities.
Alright,
I'm not here live,
I'm at work at Walmart.
I work 1 to 10 PM Sunday,
so you're likely reading this while I'm working hard.
Nurse Kelley assured me she'd be here,
and she can give you medical answers,
to clear up any confusion about my layman's descriptions.
When I get home,
and fix my meal,
I'll check your comments,
and reply to you,
as much as I can.
But I work Monday,
noon to 9PM,
so if I can't reply to everyone Sunday night,
I'll reply Monday night.
So,
to get my full dose of replies,
return to this diary in 24 hours,
and again in 48 hours,
or Tuesday morning,
if you wish.
Thanks for reading.
PS
Pam and her siblings were as follows,
from oldest to youngest:
Sandy, who does not have muscular dystrophy,
David, who did,
Pam, who did,
Shelly, who does not,
and Jeff, who did.
Sandy and Shelly
are the only ones still alive.