tag:blogger.com,1999:blog-67166280917749719982024-03-19T18:12:24.434-04:00My MSA JourneyMultiple System Atrophy: I Have This Disease - It Doesn't Have MeAnonymoushttp://www.blogger.com/profile/18191886332489878636noreply@blogger.comBlogger79125tag:blogger.com,1999:blog-6716628091774971998.post-331916754848448012015-02-01T11:04:00.000-05:002015-02-01T11:05:30.234-05:00The Diagnosis<div class="MsoNoSpacing">
<span style="font-family: inherit;">Hi, this is Steve’s
daughter Deb writing.</span><span style="font-family: inherit;"> </span></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">It was very
important to my dad to donate his brain for research.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">He also wanted us to have a definitive
diagnosis – MSA is not typically hereditary, unlike some very similar diseases.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">He would have been relieved to know that the
brain autopsy results indicated a definite diagnosis of MSA.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">Here is the statement we
received from the University of Miami Brain Endowment Bank:<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<blockquote class="tr_bq">
<i><span style="font-family: inherit;">The section shows dense a-synuclein-positive glial
cytoplasmic inclusions (GCIs) throughout in the putamen, brainstem, and
cerebellum with lesser amounts in the caudate nucleus and thalamus. Rare a-synuclein-positive neuronal inclusions
and scattered a-synuclein-positive processes were observed. Gliosis was most evident in regions with
abundant GCIs. The clinical history
together with the widespread a-synuclein-positive warrants a definite neuropathological
diagnosis of multiple system atrophy. </span></i></blockquote>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">A little bit of googling
tells us that this is typical for MSA – basically, a specific type of lesion
throughout certain parts of the brain.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">We are glad to have the
diagnosis, but there’s a certain finality to it that is saddening to us. My mom is doing well, but we all miss my dad
every single day. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">My dad worked so hard on this blog - it was a way for him to deal with what was happening to him, and to share his experiences so that other people with this disease might benefit.</span></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: inherit;">It’s unlikely that we will
add more entries to this blog, but will keep it alive in the hope that it will
help other people who are facing MSA.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<span style="font-family: inherit;">The very best to all of
you.</span><br />
<div class="MsoNoSpacing">
<span style="font-family: inherit;"><br /></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-54975796699966366192014-07-06T08:06:00.002-04:002014-07-06T08:06:37.088-04:00Post 78 - STEVE STEIDEL 1944-2014<br />I'm so sad. We lost Steve on June 28.<br />
<br />He
was doing ok. We were managing all his symptoms and problems. <br />
We quietly celebrated
our 49th anniversary on June 12. <br />
Then, the following week he started with a low
fever. It climbed to 102.8 even though he was being given a strong antibiotic
through an IV. <br />Our family doctor sent his nurse practitioner every day.
One day she came 4 times. She was so caring and compassionate.<br />
<br />Steve
gradually got worse. He could no longer move his limbs but his eyes stayed on me all the
time. The worse for me was that he could not communicate. We tried everything
but his brain wouldn't let him blink his answers and he could no longer squeeze
my hand. He managed a big smile when our two daughters came. We stayed by him
around the clock. He knew what was happening, he could hear and understand
until the very end.<br />
After a week of this the nurse practitioner brought in
Hospice. What a wonderful organization. His lungs then began to fill up and
his larynx was closing. The end was near. The girls and I whispered our love to
him and hopefully he left this earth without pain.<br /><br />I have been inundated
with beautiful notes from so many people. I realize how many lives he has
impacted.<br />I also realized that the hospice nurses are more informed about MSA
than most doctors, especially the ones in the ER. <br /><br />Steve put so much of himself
into writing this journal, especially in the beginning when he wanted to get the
word out. I have tried my best to keep it going for him. This will be the
first post that he is not "editing". <br />
Will I continue the posts? I do not know
but I will let you know the results of the brain donation. I understand it takes
months before they contact you.<br /><br />I am including the link to his obituary
and a slide show for those that did not know him personally but faithfully
followed his blog.<br /><br /><a href="wlmailhtml:{F716F9B7-F2EE-4601-A5DF-D461E3F0545B}mid://00000013/!x-usc:http://www.kays-ponger.com/obits/obituaries.php/obitID/755589/obit/Stephen-E-Steidel">http://www.kays-ponger.com/obits/obituaries.php/obitID/755589/obit/Stephen-E-Steidel</a><br /><br /><a href="wlmailhtml:{F716F9B7-F2EE-4601-A5DF-D461E3F0545B}mid://00000013/!x-usc:http://youtu.be/BcKlu-pVPH8">http://youtu.be/BcKlu-pVPH8</a><br /><br />Thank
you, everyone for your support.<br /><br />Fran SteidelUnknownnoreply@blogger.com8tag:blogger.com,1999:blog-6716628091774971998.post-35432567987803854572014-06-01T14:34:00.000-04:002014-06-01T14:34:53.525-04:00Post 77 - New Month, New MessageI'm glad to say that things are going along pretty well. <br /><br />I am irrigating
Steve's catheter every morning and that seems to be keeping the sediment buildup
in check.<br />Steve has finally acclimated to the bi-pap machine and we only need
to adjust it once or twice a night because it moves and causes an air leak.
When there is a leak the noises it makes sounds like Steve is a one man band.
It's entertainment while we sleep.<br /><br />Caregiving is a full time job that is
both exhausting and physical and we are concerned about the toll it is taking on
me. Steve had a regular doctor's appointment this month and the doctor saw the
progression in Steve and also how hard it is for me to manage him physically.
Therefore he contacted hospice and arranged for a house visit. <br />Although
Steve's disease has progressed he did not qualify for hospice yet. I guess I
should be happy but I guess I was hoping for some help. The hospice organization
is wonderful. We are now in "Transition Hospice" which means a volunteer will
come and stay with Steve for 4 hours a week to allow me some respite. The only
problem is that most of the volunteers are snow birds and they have flown the
coop. We are hoping that they will recruit some nice, new folks and we can start
the program soon.<br />Meanwhile I have contracted with a home health agency to
come in several mornings a week to help with Steve's personal needs. That starts
tomorrow.<br /><br />In several months Hospice will evaluate him again. The
criteria they look at is weight loss, loss of appetite, bed sores, pain and
several other things. <br />So, yes, I am happy that Steve has not reached that
stage.<br /><br />We are looking forward to an uneventful summer. We have learned
to accept the hot and humid days of Florida. Hopefully there will not be any
hurricanes anywhere nearby.<br />Both girls and our granddaughter will be visiting
soon so that will definitely brighten our days.<br /><br />FranUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-9644274138710389352014-04-09T13:47:00.002-04:002014-04-09T13:55:05.546-04:00Post 76 - Ouch! Ouch! Ouch!Ouch! Ouch! Ouch!<br />
<br />
When things get ironed out on one end something else gets wrinkled on the other.<br />
<br />
Several new happenings this month.<br />
First the bi-pap machine. It was back to it's old self with dozens of alarms throughout the night. These are alerting us to Apnea episodes. Steve finally decided to have them disarmed. This took a summit meeting between doctor, technician and the medical supply company. Finally all agreed that Steve would need to sign an affidavit taking full responsibility for this decision. OK, done deal and what a difference it made. We BOTH now have a restful sleep.<br />
<br />
Second the catheter change. The nurse comes every three weeks to do this. About 4 months ago the doctor changed the type of catheter from latex to silicone to see if it would help with the sediment buildup. It did but it caused another problem. The silicone has a tendency to adhere to the inside wall of the bladder. The nurses have been having a hard time getting it out. Last time it really hurt him and there was blood in his urine for several days. This time the nurse tried but decided not to yank it out like last time. A trip to the urologist was in order to solve the problem. But his nurse could't do it either. So now the doctor was going to take charge. Steve and I both thought he would deaden the area or inject some novacaine. Not to be. Doctor walked in, took hold of the catherer and yanked it out. I guess it's like removing a bandaid, the faster you do it, the less pain you feel.<br />
Of course Steve does not agree with that analogy.<br />
<br />
Things are now fine. We are back to using the latex catheter but now I am irrigating Steve every morning to try and keep the sediment in check. <br />
Hopefully next month will be uneventful.<br />
<br />
Happy Easter<br />
Fran<br />
<div>
<br /></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6716628091774971998.post-33029405115594235482014-03-11T16:02:00.001-04:002014-03-11T16:02:06.627-04:00Post 75 - Odds and Ends (no pun intended)It has been a while, so I (Fran) thought I
would let everyone know that the Bi-Pap machine is doing it's job. The
technician decided we needed a new machine. It took a while for the supply
company, technician, and doctor to get on the same page but finally tweaking
some numbers solved the problems. I think it took so long because I was trying
to be nice and not my usual impatient self. Well sometimes vinegar works better
than sugar. Yes, the alarm still goes off but only several times a night. Steve
is getting a restful sleep and wakes up refreshed. He will be trying a new full
face mask in April because the smaller mask irritates the bridge of his
nose.<br />For those who asked, the machine itself is whisper soft. If you use an
older machine and it is noisy, get yourself a newer model.<br /><br />Life never
stays uneventful for long. For several days Steve complained of an odd
sensation on one side of his buttocks. He was worried he was developing a bed
sore. <br /><br />So what did it turn out to be......SHINGLES! On day 3 I could see
the signs of small blisters in a linear pattern. We went immediately to the
doctor. Funny thing is that Steve had the shingles vaccination three years
ago. We are finding out that it is only 67% effective. Between the vaccination
and the prompt dosing of an anti viral drug he has a mild case. Thank goodness.
Hopefully it will be all cleared up by our next posting.<br /><br />Some good news
is that the FDA has finally approved the drug droxidopa. This drug has been
used successfully in Japan for decades for orthostatic hypotension.<br />People
with OH have a sudden severe drop of blood pressure when they stand up, causing
dizziness and sometimes fainting. It will be available in 6 months. We will see
our GP about this. If he does not agree to prescribe and monitor it then we
will have to deal with our neurologist. We will keep you posted.<br /><br />We hope
you are all seeing some signs of Sping wherever you may be.<br /><br />Fran and
Steve.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-90406520262908266872014-01-25T11:43:00.003-05:002014-01-25T11:47:51.639-05:00Post 74 - A Note from Fran<span style="background-color: rgba(255, 255, 255, 0);">Several of our friends have been inquiring as to how Steve is doing with his new Bi-Pap machine. I've decided to post an entry to let you know about our trials and tribulations with this BOX.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);">Eventually it's going to be good, but until then, it has been frustrating and I am completely sleep deprived. The machine has a modem and SIM card so that the doctor and Medicare can read the results. The doctor wants to make sure it is working and Medicare wants to make sure that Steve really needs this expensive gadget. </span><span style="background-color: rgba(255, 255, 255, 0);">According to the technician that has come to the house twice now, this high tech machine is learning Steve's sleeping and breathing patterns ???? </span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">Steve has obstructive apnea and also the more dangerous type called Central Apnea. The brain of an MSA patient neglects to tell the lungs to push air out to start breathing when sleeping. This machine is suppose to "read" this and push a bigger burst of air out of his lungs. ( I think, or at least this is what I understand). </span><span style="background-color: rgba(255, 255, 255, 0);">This very smart machine has an alarm to warn you that you are having an apnea episode. The technician neglected to tell us about this alarm. The first night when this alarm sounded I jumped out of bed thinking the condo fire alarm went off. It then proceeded to go off another dozen times that night and every night thereafter. </span><span style="background-color: rgba(255, 255, 255, 0);">Steve has learned to reach over and silence it. If he doesn't then I get up and gently wake him. BUT remember this machine has it's own brain and agenda. It only stays quiet for 90 seconds and then automatically re-activates itself.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br />I will regress to tell you we go to bed earlier because it takes time to get the straps, mask and tubing attached and plugged in correctly. There is a small humidifier inside this box that gets filled with distilled water every night. Every morning the mask, tubing and filter has to be washed and dried. <br /><br />I hope this does not sound as if I am complaining because nothing is further from the truth. I am thankful that all these medical advances are available to us. <br /><br />Steve is still in good spirits but he is getting more tired and exhausted with time. Our Christmas was delightful with our children here but it took a toll on him. He has not wanted to go out to a restaurant now for over a month. <br /><br />Hopefully he will be in good form soon and write the next post himself.</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-69809480780029396632014-01-12T11:04:00.000-05:002014-01-12T11:04:31.310-05:00Post 73 - Finally!<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Times New Roman;">After weeks of waiting, I finally have taken possession
of a sleep machine; specifically called a BiPA autoSV Advanced System One by
Philips or, as it’s more commonly known, a new version of a BiPAP machine which
blows a steady stream of air into the sleeping victim, er, I mean patient. The
delay, I have since learned was due to the senior doctor taking an abrupt leave
of absence, the closing of one of two offices, the re-organization of the
remaining three doctors into a new group, and the failure of my doctor to
completely fill out my correct machine orders. And the Holidays. Other than
that, no problem!</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Times New Roman;"></span> </div>
<span style="mso-ansi-language: en-us; mso-bidi-language: ar-sa; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: en-us;"><span style="font-family: Times New Roman;">Wait – there is one slight problem. Do they really expect
you to sleep soundly with both a chinstrap to keep your mouth closed and a bunch
of straps to hold the mask in place? Looks like I’ll need another visit from the
talkative technician to show me how to make this thing work as
intended.</span></span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6716628091774971998.post-33171140145907421062013-11-21T13:22:00.000-05:002013-11-21T17:37:10.016-05:00Post 72 - The Results Are In.My sleep study follow-up was yesterday and even though I have been told by my
sleep partner that I probably have sleep apnea, I didn't expect the doctor to
say "severe OSA" which stands for Obstructive Sleep Apnea. He proceeded to add
Central Apnea, Sleep related Hypoxia and Restless Legs Syndrome to the
diagnosis.<br />
<br />
I won't bore you with the numbers but let me assure you that I am
not thrilled. But maybe it is best to know so that we can now deal with a c-pap
type machine at night.. <br />
<br />
Central Apnea is the main concern because breathing is
disrupted regularly during sleep because of the way the brain functions. It is
not that you cannot breathe (which is true in obstructive sleep apnea); rather,
you do not try to breathe at all. The brain does not tell your muscles to
breathe. This type of sleep apnea is usually associated with neurological
diseases, such as Parkinson's disease, Alzheimer's disease, and ALS ( Lou
Gehrig's disease) and as we can see, MSA.<br />
<br />
In very simplistic terms, Hypoxia is
not enough oxygen getting to the brain causing confusion. Having only 84 % is
cause for concern!<br />
<br />
Our next step is an overnighter on November 28th. This time the
technician will be trying out several types of machines and calibrating them to
my exact need all while I am suppose to sleep.<br />
<br />
Wish me luck. There
definitely will be more to come.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-85857753850168773812013-11-08T17:51:00.002-05:002013-11-12T11:52:01.945-05:00Post 71 - The End Of A Busy Week<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">As mentioned in Blog entry #68, this week was
chock-full of doctor visits, catheter changes, and assorted tests.<span style="mso-spacerun: yes;"> </span>Everything was going along predictably until
Wednesday night when the Sleep Study was held.</span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">First, a little bit of history; the Sleep Study was
ordered by my latest physician, a pulmonologist, whose technician performed
what turned-out to be a normal Lung Function test a few days earlier.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">Next, the only test remaining which might determine
the course of treatment for those nights when I act out or make strange noises
is the innocent-sounding Sleep Study.</span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">I appeared exactly as directed at 8:30 PM at the
testing site, which happened to be at the rear of the doctor’s exam complex.
The room looked reasonably comfortable.<span style="mso-spacerun: yes;">
</span>Fran, my wife, caretaker and chauffer, accompanied me as well, in case
my suprapubic catheter, or me, in general, needed attention. She got to sleep
in a recliner while I, the subject, slept, or tried to sleep in a Murphy
Bed-like set up.</span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">We were met by a helpful technician who immediately
hooked me up to twenty-four EKG-like sensors from the bottom of my legs to the
top of my head and then tells me to “go to sleep.” It reminded me of a trip to
the dentist where your mouth gets stuffed with about ten tubes and the dentist
wants to carry on a conversation.<span style="mso-spacerun: yes;"> </span>How
does he expect me to fall asleep all wired up like this?</span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;">Both of us must have eventually fallen asleep
because the technician sticks his head in the door to announce its six o’clock
and time to get up.<span style="mso-spacerun: yes;"> </span>He then proceeds to
remove the twenty-four sensors, leaving behind some adhesive as a souvenir of
my visit.</span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<span style="font-size: large;"><span style="mso-tab-count: 1;"> </span>It
was too early for our regular breakfast spot, so we found someplace open
instead.<span style="mso-spacerun: yes;"> </span>Turns out they make pancakes
the size of Frisbees.<span style="mso-spacerun: yes;"> </span>What a strange
experience!<span style="mso-spacerun: yes;"> </span>Now I‘ll have to wait until
Nov 20</span><span style="font-size: small;"><sup>th</sup></span><span style="font-size: large;"> for the results.<o:p></o:p></span></div>
<br />
<div class="MsoBodyTextIndent" style="margin: 0in 0in 0pt;">
<!--[if !supportEmptyParas]--><span style="font-size: large;"> <!--[endif]--><o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-77748341498671920852013-11-04T14:04:00.002-05:002013-11-04T14:06:41.972-05:00Post 70 - Isn't This A Pain In The #%&*<br />
First, let me apologize to the many nice people who have
left messages or comments in the past few weeks.<span style="mso-spacerun: yes;"> </span>Please do not think I have ignored you. Very much to the
contrary, I open and read all comments.<span style="mso-spacerun: yes;">
</span>Just when I had it figured out, Google went and changed a few things on
their blog page (for my convenience).<span style="mso-spacerun: yes;"> </span>I
think I finally have these new changes figured out but I can always be reached
at ssteidel@comcast.net<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
Now for the matter at hand; aside from the usual aches and
pains of growing older (I’m speaking about arthritis which flares up every
morning but can usually be massaged or medicated away by noon), I feel
fortunate in never having to bore my readers with comments about MSA related
pain. Fortunate because until about three weeks ago there was no pain
associated with my symptoms.<span style="mso-spacerun: yes;"> </span>Plenty of
other things were wrong, like loss of balance or speech – but no pain.<span style="mso-spacerun: yes;"> </span>I used to be able to say that – but no
longer.</div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
A few weeks ago,
I developed an annoying pain on the inside of my knees, mostly the</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
right one but
occasionally the left one as well.<span style="mso-spacerun: yes;"> </span>The
pain is at it’s worse when I am </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
transferring from
one chair to another.<span style="mso-spacerun: yes;"> </span>On those
occasions my hips decide to join in and </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
hurt as
well.<span style="mso-spacerun: yes;"> </span>I am also experiencing these
pains and sensations when in bed. </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
I only hope it
doesn’t progress any further.</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-21184644681543026422013-10-20T14:50:00.002-04:002013-10-20T15:16:42.810-04:00Post 69 – It’s Gonna Be a Busy Couple of Weeks<span style="font-family: Calibri;">Most weeks go by with nothing going on. Time to sit around
and read or to catch up on messages from good friends who genuinely care about
my condition. <span style="mso-spacerun: yes;"> </span>These coming weeks,
however, promise to be anything but routine and quiet.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">First, on Tuesday, comes a regular quarterly visit with my GP.
The biggest change since my last visit involves pain in my hips & knees
when any pressure is applied (like changing chairs or getting into or out of bed).
<span style="mso-spacerun: yes;"> </span>I’ll also tell him that these “pain and stiffness”
episodes seem to coincide with my taking the anti-infection drug Cipro every
time my supra-pubic catheter is changed by the visiting nurse.<span style="mso-spacerun: yes;"> </span>I will also mention an overabundance of
saliva when not called for or expected. </span></div>
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>And I’ll tell him
about my upcoming visit to a pulmonologist specializing in sleep disorders to
learn the results of my recent pulmonary function test to determine why I act out
during sleep and to assess my laryngeal stridor.<span style="mso-spacerun: yes;"> </span>After this battery of tests I should have
more information.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;">** This blog post was
typed by my daughter Debra who is visiting.<o:p></o:p></span></i></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-14969639583288438792013-09-14T16:11:00.003-04:002013-09-14T16:14:29.213-04:00Post 68 - My TurnI guess it's my turn to write. <br />
<br />
Steve is ok. It's just that it takes him so
long to type that he gives up. He has emailed several friends this past week.
Short notes that took him the better part of the day.<br />
<br />
We have had several
new developments.<br />
We finally were able to get a hospital bed. Medicare is
strict especially when you have an honest doctor. The bed is not for the
convenience of the caregiver but for the need of the patient. <br />
<br />
The other
development is what qualifies him to get the bed. <br />
In the later stages of
MSA a problem develops with breathing while sleeping. It is called Nocturnal
Laryngeal Stridor.<br />
<br />
What is happening is that his larynx cannot close and
open correctly<br />
(partial paralysis) and the air gets trapped going in with a
wheezing sound and then bursts out with a graspy sound. Seems that it is a
common occurrence with MSA. Soooo, nighttime is not fun. The second I hear him
start making an odd noise I wake him up. This happens about 5 times a night.
Oddly, there are some nights that it doesn't happen at all.<br />
<br />
We are
waiting for a scheduling of a sleep study to be done at the hospital. The
doctor prefers this than a sleep clinic because of Steve's medical
issues.<br />
<br />
His supra pubic catheter is working out very well. A nurse comes
to change it every 3 weeks rather than 4 because for some reason his bladder
makes tons of grit that clogs the tube. <br />
<br />
Bowel issues: Let's not go
there. I give him prunes and juice, miralax, docolax, liters of water, fruits
and veggies, and still he has a hard time. His brain may send the message but
his body is not receiving it.<br />
<br />
It's kinda like when I talk and he doesn't
listen. Chuckle!<br />
<br />Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-6716628091774971998.post-85062909234613896262013-08-08T15:38:00.003-04:002013-08-12T15:33:13.402-04:00Post 67 – What Next?<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">By now you’re probably
sick of hearing about the trials and tribulations I’ve experienced while
adjusting to my supra-pubic catheter which was surgically implanted on May 10<sup>th
</sup><span style="mso-spacerun: yes;"> </span>Just one more cautionary tale –
one about something I didn’t see coming!<o:p></o:p></span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>Each week I have a visiting nurse stop by to
check my vital signs and inspect the operation site.<span style="mso-spacerun: yes;"> </span>Her job, on a monthly basis, is to remove the
old catheter and replace it with a new one (a simple task that takes about 10
minutes).<span style="mso-spacerun: yes;"> </span>The first time she made the
change was about 60 days after the operation.<span style="mso-spacerun: yes;">
</span>Actually, the very first time the catheter was changed was by the
urologist’s nurse in the doctor’s office around 30 days after the procedure.<span style="mso-spacerun: yes;"> </span>So, after 2 different nurses had no problem
changing the catheter, I assumed every change would take place without a
problem.<span style="mso-spacerun: yes;"> </span>Little did I know!<o:p></o:p></span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">Now it’s early on a Monday
morning and the visiting nurse isn’t due until Friday to change the
catheter.<span style="mso-spacerun: yes;"> </span>I‘ve awakened early each of
the prior 3 nights with a feeling of fullness (almost pain) in my bladder
area.<span style="mso-spacerun: yes;"> </span>On each of those 3 nights I could
only get relief when I moved to a recliner and changed my position.<o:p></o:p></span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">My wife, Fran, called the visiting nurse service later
that morning and explained </span></span></div>
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">my predicament.<span style="mso-spacerun: yes;">
</span>Shortly afterward, the nurse called and confirmed she would </span></span></div>
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">come over as soon as
possible.<span style="mso-spacerun: yes;"> </span>When the nurse arrived she
changed the catheter and I immediately got relief.<span style="mso-spacerun: yes;"> </span>It turned out that the old catheter was full
of a grit- like substance that clogged the diameter of the tube therefore not
allowing the urine to flow. <o:p></o:p></span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">Hopefully, each month will
not bring a new adventure of this type.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">I will keep you informed.</span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-45181939162387330032013-06-29T14:34:00.000-04:002013-07-01T13:47:53.737-04:00Post 66 - Boy, Is My Face Red!<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-size: 14pt;"><span style="font-family: Calibri;">In a prior post on this
blog, Fran explained some of my urinary problems and mentioned how I had
decided to have a supra pubic catheter installed.<span style="mso-spacerun: yes;"> </span>For the benefit of those people who may not
know, a supra pubic catheter procedure involves making a small incision just
below the belly-button into which is run a <span style="mso-spacerun: yes;"> </span>catheter that takes the liquid waste into a
leg bag or, depending on the hour, into <span style="mso-spacerun: yes;"> </span>a night bag hung on the side of the bed. Now
that I sleep uninterrupted through the night I’m sorry I didn’t have the
procedure done sooner.<span style="mso-spacerun: yes;"> </span>There are a few
minor inconveniences associated with the aftermath of having this type of catheter
– one of which I ignored – and one which caused me great embarrassment!<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;">A small
pleasure I look forward to each month is when a few guys get together for a couple
of hours to eat lunch, shoot the breeze, and play darts at a local pub (I don’t
actually shoot darts – which could be very dangerous – I keep score, which
keeps me safely behind the shooter’s area, either propped against or holding on
to a counter-height table). <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>On this particular day,
our group of R.O.M.E.O.s (Retired Older Men Eating Out) consisted of Ray (who
usually drives me and pushes my wheelchair) Charlie, Allen, and Rob.<span style="mso-spacerun: yes;"> </span>The only ROMERO missing was Dave who was off
camping.<span style="mso-spacerun: yes;"> </span>We had finished our lunch and
were in the dart-throwing area already on our second game when disaster
struck!<span style="mso-spacerun: yes;"> </span>I was wearing new shorts which
Fran had recently bought to cover the leg bag, which on this day was strapped
to my right thigh.<span style="mso-spacerun: yes;"> </span>The only problem is when
you buy over-size shorts and you wear them before taking them in so the waist
holds them up.<o:p></o:p></span></span><br />
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;"></span></span><br />
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;">You can guess what happened next.<span style="mso-spacerun: yes;"> </span>We were halfway through the second game, it
was close, and I was intent on keeping score.<span style="mso-spacerun: yes;">
</span>Perhaps because I was concentrating on the game, I failed to notice that
my shorts were falling and were almost to the bottom.<span style="mso-spacerun: yes;"> </span>If I tried to pull them up I’d probably end
up on the floor – so I let them fall. <o:p></o:p></span></span><br />
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;"></span></span><br />
<span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;">Now I know that Ray and Rob are good friends – they both
helped me pull up my fallen shorts.<span style="mso-spacerun: yes;">
</span>Anyway, the other people in the pub probably didn’t know or care what
was going on at Dartboard #6 but if anyone was offended – my sincere apologies.<o:p></o:p></span></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6716628091774971998.post-81632158234845132182013-05-31T12:20:00.000-04:002013-06-04T11:34:54.708-04:00Post 65 - A Message From Fran<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">For those who don't know me, I'm Fran, Steve's wife.. </span>I told Steve I would help him type his messages if he dictated. I didn't think I would be writing my own message for his blog.<br />
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
A lot has happened since his supra pubic catheter was inserted on May 10, which by the way is a lot easier to deal with than constant self catherization.</div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
Two days after he was home from the hospital he developed a severe fecal impaction. I won't go into details. He may in the future. That wiped him out, literally and physically. Now, a week later he developed a fever and UTI. The high fever has rendered him incapable of picking himself up from the bed or chair, even with my help. He cannot keep himself upright and tilts to the side making it dangerous to be in a chair. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
I think we are at a crossroads. I can hope that when his fever subsides his strength will return, but I have my doubts. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
A nurse and an aide are coming today. I'm hoping they will evaluate the situation and give this information to our doctor. I will be speaking with him next week to see what our next step is. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
I have realized that I no longer have the strength or ability to help Steve properly and I don't want to see him fall on my account. Whether this means a hospital bed and more home health care I don't know. We will see. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
<br /></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">
Meanwhile we will be celebrating our 48th anniversary on June 12th. If we can't go out to a nice restaurant, I will just bring something in and enjoy our day together.</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6716628091774971998.post-35041002774736403782013-05-09T19:26:00.000-04:002013-05-11T08:23:52.102-04:00Post 64 - Part One and Part Two<span style="font-family: Calibri;">This is Part One of what is intended to be a two-part
post describing the lead-up (part one) and part two – the actual procedure , which
will result in the placement of a supra pubic catheter in the abdominal area of
yours truly.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Calibri;">T</span></o:p><span style="font-family: Calibri;">he decision to go ahead with this placement was really
an easy one after trying and failing to get the hoped – for relief from self-catheterization.
My urologist, who will perform the procedure, agrees that a supra pubic
catheter is the only related procedure that we haven’t yet tried.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<span style="font-family: Calibri;">My biggest concern isn’t the procedure itself, which
simply involves a small hole in the abdominal wall and bladder into which a long-term
catheter is placed.<span style="mso-spacerun: yes;"> </span>My biggest concern
is the anesthesia which may have lasting effects on someone with MSA.<span style="mso-spacerun: yes;"> </span>Fortunately, Fran and I were able to speak
with the anesthesiologist a few days beforehand and were able to tell him of
our concern.</span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">We are confident that everyone is “on the same page” for
tomorrow’s surgery.<span style="mso-spacerun: yes;"> </span>Now if I could only get
them to change the start time of tomorrow’s surgery – 5:30AM – isn’t that a
terrible hour?<span style="mso-spacerun: yes;"> </span>I’ll report back to you
either later Friday or Saturday. </span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;"><u> Part Two</u></span><br />
<span style="font-family: Calibri;">It’s about 4PM on the day of
the procedure and yours truly has just awakened from a several hour nap<em>.</em><span style="mso-spacerun: yes;"> </span><span class="MsoSubtleEmphasis"><span style="color: grey;">The n</span></span>ap was necessary because I was awake
at 4AM this morning to prepare for the placement of a supra pubic
catheter.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">This procedure, which was to be
performed by my urologist at Fawcett Memorial Hospital in Port Charlotte, FL,
required that I use a special liquid soap to get ready for the 7AM
operation.<span style="mso-spacerun: yes;"> </span>At the hospital I had another
discussion with the anesthesiologist that only a minimum of
anesthesia would be used.<span style="mso-spacerun: yes;"> </span>A few minutes
later, the urologist was in and made sure I had talked with everyone involved in this procedure.</span><o:p><span style="font-family: Calibri;"> </span></o:p><br />
<br />
<span style="font-family: Calibri;">It must have been a fairly simple
procedure - I was back in the Recovery room in 1 hour and reunited with Fran in
about 1hr 30mins. I was on my way home<span style="mso-spacerun: yes;"> by about 10:30AM. </span>All in all – not a bad
day!</span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;"><strong>Note</strong>: It's 8AM "the morning after", Sat, May 11th,and for the first time in months, I've slept the night thru. This morning, Fran changed the night bag for the smaller, day-version . Right now the supra pubic catheter seems like the best available option for someone in my situation.</span><br />
<span style="font-family: Calibri;"></span> </div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6716628091774971998.post-1153077857036779422013-04-24T16:57:00.001-04:002013-04-24T16:57:18.261-04:00Post 63 - That's All Folks (sort of)
<span style="font-family: Calibri;">This blog, which began in August of 2009 when I decided
to chronicle my trip to Germany for what turned out to be unsuccessful stem
cell treatment, will semi-conclude with this post, #63.<span style="mso-spacerun: yes;"> </span>Semi-conclude, not completely conclude
because I still wish to occasionally speak about MSA; how it affects me and
some experiences that might make life more bearable for my fellow MSA sufferers.</span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">I’m semi-concluding this blog for the simplest of
reasons; my fingers just don’t hit the keys I aim at.</span></div>
<span style="font-family: Calibri;">By the time I correct the misspellings in my latest entry
and the time it takes to complete and post an entry, a couple of hours have
gone by, hours that have become more precious as each day passes.</span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Fran, my long-suffering wife and caregiver, has just graciously
offered to type up my wandering thoughts in the future. <span style="mso-spacerun: yes;"> </span>She types much better than I ever did so we
should be in fo<b style="mso-bidi-font-weight: normal;">r </b>an
improvement.<span style="mso-spacerun: yes;"> </span>Until next time<span style="mso-spacerun: yes;"> </span>.<span style="mso-spacerun: yes;">
</span>.<span style="mso-spacerun: yes;"> </span>.</span></div>
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-6716628091774971998.post-44717016867661150882013-04-09T18:26:00.001-04:002013-04-09T18:26:15.131-04:00Post 62 - Just Another Accomodation
<span style="font-size: 11pt;"><span style="font-family: Calibri;">I‘ve mentioned several times
before<span style="mso-spacerun: yes;"> </span>how MSA involves adapting to a
series of physical conditions such as conditions affecting balance which
require first a cane or walker, later a wheelchair, so people don’t think you’ve
had too much to drink.<span style="mso-spacerun: yes;"> </span>Another condition
I’m dealing with now involves the loss of my voice and what to do when I want
to add something and be understood.<span style="mso-spacerun: yes;"> </span>Just
when I thought<span style="mso-spacerun: yes;"> </span>had encountered all the
annoying conditions MSA had to offer, a brand new one pops up.<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">This time the issue or
annoying condition I’m experiencing involves drooling or, as someone more
refined might say, having an excess of saliva when it’s not needed.<span style="mso-spacerun: yes;"> </span>Actually, these discharges don’t just emit
from my mouth, but my nose, taking a difficult situation and making it
extremely troublesome. Imagine having a spoonful of water placed in your mouth
with every forkful of food.<span style="mso-spacerun: yes;"> </span>You can
swallow or remove the excess with your napkin.<span style="mso-spacerun: yes;">
</span>Or, you’d like to add something to the conversation but first you’ve got
to deal with this water in your mouth.<span style="mso-spacerun: yes;">
</span>So what do you do?<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 11pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 11pt;"><span style="font-family: Calibri;">First, you go shyderager@yahoogroups.com
(the MSA Support blog) to find out if others have encountered this phenomenon
and how they dealt with it. You find it’s just another strange condition
sometime experienced by those approaching advanced stages of MSA.<span style="mso-spacerun: yes;"> </span>You also learn that there’s no treatment for
this annoying condition. Lastly, you find the only thing you can do is to
prepare for this dinner time visitor – and ask for extra napkins!<b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></span></span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-46577156696327698072013-03-05T12:41:00.000-05:002013-03-05T12:41:57.871-05:00Post 61 - Where do the Months Go?
<br />
<div style="font-weight: normal; margin-bottom: 0in;">
I must apologize
to readers of this blog for the delay between postings. I try to post
at least every thirty days but I realized today that I haven't posted
since January19th.
</div>
<br />
<div style="margin-bottom: 0in;">
<span style="font-weight: normal;">In my
defense, my mind may have been somewhat preoccupied by the fact that
I've been </span>fighting a UTI during the entire month of of
February. For the uninformed, a UTI is short for <u>urinary track
infection</u>, a condition many MSA'ers are familiar with.
</div>
<br />
<div style="font-weight: normal; margin-bottom: 0in;">
I think I've
whipped this bout of infection, through lots of juice and a
prescription for the antibiotic, Cipro,</div>
<br />
<div style="font-weight: normal; margin-bottom: 0in;">
Finally, I've
learned the most likely way I contacted this infection was less than
spotlessness at the catheter site. Lesson Learned: Germs are
ubiquitous. Scrub up thoroughly even if you don't think its
necessary.</div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6716628091774971998.post-7129281553539978712013-01-19T12:04:00.000-05:002013-01-19T12:04:02.800-05:00Post 60 - Who Moved That Wall
<span style="font-size: 11pt;"><span style="font-family: Calibri;">Those of you who read Post 58 or, “Another
Concession,” learned of my purchase of a <o:p></o:p></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;">Jazzy ”U<u>l</u>tra” motorized wheelchair to take the
place of my regular chair.<span style="mso-spacerun: yes;"> </span>This power <o:p></o:p></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;">chair was intended to make it easier to get around the
<span style="mso-spacerun: yes;"> </span>condo.<span style="mso-spacerun: yes;">
</span></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">I should have waited a few days before posting my
final comments – in order to describe <o:p></o:p></span></span></div>
<span style="font-size: 11pt;"><span style="font-family: Calibri;">how that intention actually worked out. With 5 forward
speeds you’d think I’d get from <o:p></o:p></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;">one end of the condo to the other, in no time at all. <o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">The problem wasn’t speed. It seems that things kept
getting in my way – like walls, <o:p></o:p></span></span></div>
<span style="font-size: 11pt;"><span style="font-family: Calibri;">doorframes, and even a pesky piece of base molding I
kept running into. I couldn’t figure it <o:p></o:p></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;">out – the chair had become more of a battering ram –
damaging everything it <o:p></o:p></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;">encountered.<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">It finally became clear what was causing the problem; <span style="mso-spacerun: yes;"> </span>I’ve lost most of my sense of <o:p></o:p></span></span></div>
<span style="font-size: 11pt;"><span style="font-family: Calibri;">depth perception which makes things seem closer or
further away than they really are.<span style="mso-spacerun: yes;">
</span></span></span><br />
<span style="font-size: 11pt;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">Since there’s no improvement in sight, you’ll soon see
a “For Sale” notice on Craig’s List or our </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt 0.5in; text-indent: -0.5in;">
<span style="font-size: 11pt;"><span style="font-family: Calibri;">local </span></span><span style="font-size: 11pt;"><span style="font-family: Calibri;">Classified –before I knock down the condo!</span></span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-24394300420330809452013-01-01T12:54:00.002-05:002013-01-01T18:00:27.376-05:00Post 59 - Help for the Handicapped<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Every
other year, a quiet and subdued Christmas celebration takes place at our house
– just a few close friends or relatives who aren’t heading north or who live
here year-round.</span></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"></span></o:p></span> </div>
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Next
Christmas, however, the activities around here (and I expect to be here) should
be merrier and certainly noisier, since our oldest daughter, Deb, our son-in-law,
Mike, and our 8-year-old granddaughter, Lily, will be spending the Holidays with
us.<span style="mso-spacerun: yes;"> </span>And, if we’re really lucky, our
youngest daughter, Lee, will get away for a few days and the whole family will
be together.<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">This
“off year,” no matter how quiet and peaceful, was not without its share of health-related
surprises.<span style="mso-spacerun: yes;"> </span>The first item was the gift I
decided to give myself. Every time I chose to transfer from my wheelchair to
some other chair was becoming more dangerous because I had to rely more on Fran’s
help. That “team” act would be no problem if she and I were anywhere near the
same size, but she’s nearly a foot shorter and considerately lighter, and a
transfer always meant risking a fall or muscle strain. So, to guard against
injury to either of us, we treated ourselves to a motorized “lift” chair from
our local medical supply store; the same one we got our scooter from a few years ago.
The chair was delivered on Christmas Eve and has been working just fine. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">The
next item was a surprise from Fran to me, disguised with bright-colored Holiday
wrapping. <span style="mso-spacerun: yes;"> </span>Apparently, my dear wife is
tired of cleaning up after me, especially around the dining table where food regularly
spills from our standard shaped, every-day bowls. My gift, as much for herself
as for me, was a few dishes especially designed for the handicapped or people with
dexterity issues.<span style="mso-spacerun: yes;"> </span>I’m pretty sure they’re
working as intended – Fran has ordered the whole set and the dog isn’t hanging
around my chair as much.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Seriously,
let’s hope 2013 turns out to be Happy & Healthy for us all!<o:p></o:p></span></span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6716628091774971998.post-7325271722178879882012-11-30T18:08:00.001-05:002012-11-30T18:12:30.702-05:00Post 58 - Another Concession <br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">If
you have spent your valuable time actually reading some of the many entries that
make up this blog, you’ve noted a theme that pops up every now and then.<span style="mso-spacerun: yes;"> </span>You may recall that I complain that I’ve had
to grudgingly rely on an increasingly complex number of appliances – just to carry
out my daily activities.</span></span><span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Back
so many years ago – it’s only been about 5 years – that MSA became a reality
for me, I’ve gone from nothing to a cane, to a walker, to a motorized scooter,
to a travel wheelchair, to a full-sized wheelchair, and now to the latest piece
of equipment.</span></span><span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Before
I write about this latest addition to my artificial mobility, I have to admit
that the last few items have been much easier for me to accept than the
first.<span style="mso-spacerun: yes;"> </span>The most difficult was actually
the first, the use of a cane. <span style="mso-spacerun: yes;"> </span>I guess
that’s because the cane was the first outward sign that MSA was for real and
that it was likely going to lead to its inevitable conclusion.</span></span><span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">Now
that I’ve got you curious about what this latest addition could be – I am the
happy new owner of a slightly used, 2005 edition of a Pride “Jazzy Ultra” motorized
wheelchair which gets me around the house in no time – as long as I stop
hitting doors and walls.<span style="mso-spacerun: yes;"> </span>New, this chair
- which even comes with a cup holder – retailed for around $6000. <span style="mso-spacerun: yes;"> </span>Fortunately, I paid only a fraction of that
because it was gently used.<span style="mso-spacerun: yes;"> </span>I’ll get the
hang of driving it soon – until then, you better watch your toes when I’m
around.<o:p></o:p></span></span></div>
Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-6716628091774971998.post-84078267947229838192012-10-24T11:09:00.001-04:002012-10-24T11:22:13.410-04:00Post 57- Another Post, in Less Than A Week - How Come? <span style="font-size: 12pt;"><span style="font-family: Calibri;">I usually try to spread out
these posts to once a month; and honestly, there are months when I really have to
work at coming up with a topic of interest. Occasionally the opposite is true;
once in a while I come across several stories or personal happenings when I
have the pleasant task of picking what to include now and what to put off until
a later post. Recently, however, I became aware of something that not only
deserved its own post, but warranted my very first letter of support directed
at a congressperson – actually several. <o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><span style="font-family: Calibri;">I’ve mentioned a number of
times in this blog about a support group I belong to that contains much
valuable information and news about upcoming drug tests or recent
pharmaceutical releases</span></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">(<a href="mailto:shydrager@yahoogroups.com">shydrager@yahoogroups.com</a>).
As long as I’ve<span style="mso-spacerun: yes;"> </span>belonged to this user
group I read about the use of a drug called Droxidopa, which the Japanese have
used <span style="mso-spacerun: yes;"> </span>for years to safely treat
neurogenic orthostatic hypotension (NOH).<span style="mso-spacerun: yes;">
</span>Since just about all MSA patients suffer from NOH (a significant drop in
low blood pressure upon standing; causing light-headedness and risk of
fainting), it seems that the rapid approval of Droxidopa by the FDA is a
“no-brainer.” Instead, the FDA has been demanding more tests before approval,
despite years of successful usage in Japan, a country with rigid pharmaceutical
controls. Chelsea Pharmaceuticals, the U.S. company hoping to bring this drug
to our market has established an action group called the Treat NOH Now
Coalition to encourage rapid action to evaluate Droxidopa.<span style="mso-spacerun: yes;"> </span>The Coalition’s web site </span><a href="http://www.treatnohnow.com/"><span style="color: blue; font-family: Calibri;">www.treatnohnow.com</span></a><span style="font-family: Calibri;"> contains a thorough
explanation of their goals as well as a complete </span></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">definition of the problem and
a place to compose and send off an email letter of support.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><span style="font-family: Calibri;">Enclosed below is a copy of the
email message I recently sent off in support of the Coaliton (my premier letter
to legislators).<span style="mso-spacerun: yes;"> </span>You may wish to use it
as a guide if you plan to email one.<span style="mso-spacerun: yes;"> </span>Thank
you for taking the time to learn about NOH.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">"My name is Steve Steidel, I live in Punta Gorda FL and I’m a
retired police officer from Suffolk County, NY. I’ve been diagnosed with a rare
neurological disease called Multiple Systems Atrophy (MSA) which has been
described as a ‘”fast-moving” Parkinson Disease.<span style="mso-spacerun: yes;"> </span>On average, a person with MSA survives 8
years after diagnosis (my diagnosis was made in 2009 so time runs short). I,
like most MSA patients, suffer from neurogenic orthostatic hypotension (NOH) which
causes us to experience symptoms of dizziness, lightheadedness and/or fainting
when we sit or stand up. For many with NOH, including me, these symptoms are
persistent and interfere with our everyday activities.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I am bothering you today because the only U.S. Food and Drug
Administration (FDA) approved treatment at this time is Midodrine; however,
this agent is not yet proven to affect symptoms associated with the disorder
and it causes a range of undesired side effects. Midodrine faces FDA withdrawal
from the U.S. market if it does not demonstrate symptomatic benefit with its
two ongoing studies by 2014. That’s why new treatment options need to be made
available now.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Therefore, this letter’s objective, while it may be somewhat
self-serving, asks you to fulfill your role as a member of Congress by urging the
FDA to accelerate review of NOH treatments and support the goals of the Treat
NOH Coalition who seeks to advance the development and approval of treatments
for NOH.<span style="mso-spacerun: yes;"> </span>These goals of the Coalition
are spelled out ohttp://www.treatnohnow.com</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Thank you for your time and attention to this correspondence:"</span></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6716628091774971998.post-16235112348586880982012-10-18T10:42:00.002-04:002012-10-18T10:43:48.143-04:00Post 56 - Just How Fat Is This Guy Gonna Get? <br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><span style="font-family: Calibri;">When I started this humble
blog in August of 2009, I weighed somewhere around 150 pounds, the same weight
I carried for many years, especially since replacing my highly caloric lunches
with a cup of yogurt and an apple. Of course, I was always on the go somewhere,
in particular since landing a training consultant’s job which involved lots of
travel and prep work.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;"><span style="mso-spacerun: yes;"> </span></i><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">At the beginning of 2012,
after about five years or more of dealing with the effects of this damned
disease, I noticed a continual weight gain until today I tip the scales at a
robust 175 pounds, the heaviest I’ve ever been.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">Some of this excessive
poundage I can attribute to a loss of mobility which has caused me to spend
more of my time in a wheelchair BUT, when the gain began to worry me, about 10
pounds ago, I watched my diet more closely and found that my intake was still
quite moderate.<span style="mso-spacerun: yes;"> </span>Fran, my resident
nutritionist, who, while using the techniques of Weight Watchers, has shed
about 25-30 pounds, which is suspiciously exactly what I’ve gained, can attest
to my portion control and other dietary restraints.<span style="mso-spacerun: yes;"> </span>Yet, still I keep on gaining!<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">My “girth enhancement” is
becoming more problematic in a number of ways. First, Financial – Fran has
bought me a bunch of “big boy” clothes based around size 36 pants and XL tee
shirts to accommodate my increasing waist size and expanding pot belly.<span style="mso-spacerun: yes;"> </span>Second, Physical – extra pounds, in
particular around the middle, are very uncomfortable, especially when trying to
get comfortable in a wheelchair or other piece of standard furniture – the “’belly”
always seems in the way. And third, Psychological – simply put, I dislike this
extra weight, don’t like how it looks, and am anxious to lose it.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="font-size: 12pt;"><span style="font-family: Calibri;">I took a look at the
side-effects of the medications I’m taking and found that one, Florinef, (fludrocortisone)
which is prescribed for low blood pressure, helps raise one’s pressure thru the
retention of salt and water – in fact, some people mention the Florinef ”fluff”
which describes unwanted weight gain.<span style="mso-spacerun: yes;">
</span>I’ll discuss this with my GP, but I already know what he’ll say.<span style="mso-spacerun: yes;"> </span>“You’ll need the extra pounds in case you’re
hospitalized from a fall or with aspiration pneumonia and are likely to lose
weight.” A big help, he is.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><span style="font-family: Calibri;">So maybe I’m stuck with these
extra 25-30 pounds or maybe I can shed some or all of them.<span style="mso-spacerun: yes;"> </span>I’ll keep you posted. If any other MSA’ers
would like to comment, I’d appreciate hearing from you – either comment here or
e-mail me privately at ssteidel@comcast.net <o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6716628091774971998.post-50142998655960036962012-09-24T17:47:00.002-04:002012-09-25T11:02:02.363-04:00Post 55 - You Want Me To Put That Where?<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">The
following is a conversation that took place in my urologist’s office during my
last visit a few weeks ago.<span style="mso-spacerun: yes;"> </span>This is the
same specialist who has seen me for at least five years and has treated my neurogenic
bladder with different medications, experimenting until he found the one that
worked best and had the fewest side-effects. Right now, Proscar seems to
working fairly well.<span style="mso-spacerun: yes;"> </span>Based on how those
prior visits went, I expected more of the same, perhaps discussing the merits of some
new medication. Boy, was I ever wrong!<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Doctor:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"> <span style="mso-tab-count: 1;"> </span>On each office
visit over the years, we’ve taken a scan of your bladder to determine if you
are <b style="mso-bidi-font-weight: normal;">r</b>etaining any urine.<span style="mso-spacerun: yes;"> </span>We’ve discovered the amount you’re retaining
has increased to an unacceptable level.<o:p></o:p></span></span></div>
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"></span></b></span><br />
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Me:<span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span></span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">That’s probably not a good
thing.<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Doctor: <span style="mso-tab-count: 1;"> </span></span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">No, it’s not – in fact, when
your bladder retains urine it increases the chance of a nasty bladder infection
or the possibility of a troublesome kidney problem.<span style="mso-spacerun: yes;"> </span>Believe me you don’t want either of those bad
boys.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Me:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>Sounds serious – so I guess
it’s time to change the medication again?<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Doctor:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>I don’t think
so.<span style="mso-spacerun: yes;"> </span>We’ve tried all the drugs available.
Unfortunately, there is no medication that helps the bladder empty out. You’ll
have to get rid of this excess MANUALLY, through use of a disposable CATHETER.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Me:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>You gotta be
kidding!<span style="mso-spacerun: yes;"> </span>How do I manage that?<span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt 1in; text-indent: -1in;">
<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Doctor:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>On your way out
today make an appointment with my nurse – she’ll show you what to do.<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Me:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>Are you sure you read
the scan right?<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;">Doctor:</span></b><span style="font-size: 11pt; mso-bidi-font-size: 10.0pt;"><span style="mso-tab-count: 1;"> </span>Don’t be such a
baby. (He didn’t really say that, but I know he was thinking it)</span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><span style="font-family: Calibri;">So
three days later, there I am with Fran, my wife and super caregiver, back in
the office talking with a nurse young enough to be one of my daughters and she’s
keeping a straight face while demonstrating<span style="mso-spacerun: yes;">
</span>everything involved in self-catheterization. <span style="mso-spacerun: yes;"> </span>And I kept a straight face, which was
especially challenging when she asked about what size catheter to start with.<span style="mso-spacerun: yes;"> </span>She must have noticed the confused look on my
face; small? medium? large? (later I learned that catheter sizes start at 14”
long and go up in length to around 19”). The nurse explained that since all you’re
doing is draining the bladder, smaller is better – the less the likelihood of an
obstruction.<span style="mso-spacerun: yes;"> </span>Definitely don’t want any
obstructions, no sir! </span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 10.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
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<span style="font-size: 12pt;"><span style="font-family: Calibri;">I wasn’t prepared for the
next part of the demonstration which by now seemed like a final exam I had to successfully
complete to obtain a passing grade in “catheter class.” If you guessed I had to
actually perform a catherization on myself right there in front of Fran and the
nurse- you’d be right.<span style="mso-spacerun: yes;"> </span>There’s no need
to get specific about what came next except to say that modesty and MSA are mutually
exclusive.<span style="mso-spacerun: yes;"> </span>In other words, if a person successfully
completes “catheter class” he or she must be prepared to surrender any
remaining modesty and dignity.</span></span></div>
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<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
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<span style="font-size: 12pt;"><span style="font-family: Calibri;">My new, twice daily task
really isn’t so bad after all. Just a few minutes each morning and at bedtime
and I’m “good not to go” for several hours and I usually sleep the night thru.<o:p></o:p></span></span></div>
<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"></span></o:p></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Calibri;">Now if they could better
prepare you for the final exam.<o:p></o:p></span></span></div>
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