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This page started out as
a long reply to an e-mail as you'll see below. It tells a lot
about my care, and actually gives a pretty detailed overview of the
primary aspects of my care (respiratory, bladder / urinary, general quad
care, and a little more). Between this page, and the "details
of my care" page, that should give anyone a solid idea of what my
care entails, some of which could be beneficial for a high-level
quadriplegic and/or ventilator user. I have been quite healthy
(knock on wood and thank you God:) considering I'm a vent-dependent
quadriplegic, which means we must be doing something right with the
below routines. I incorporated what the sender wrote into my
replies below, so this gives the whole "conversation."
If you're a
ventilator-dependent quadriplegic (or a caregiver for one) I think
you will find everything here interesting and perhaps useful, but if not,
and you're only interested in a certain category, here are direct links:
•
Healing
Pressure Sores (and preventing them)
•
Respiratory Care
[UPDATED 9/17/2008]
-
An
Aside on Homeopathy (an alternative medicine that's my second line
of defense)
•
Bladder
/ Urinary Care
•
General
Quad Care (bathing, bowel maintenance, physical therapy, etc)
-
An
Aside on Paralysis "Cures"
In
a message dated 1/4/07 12:18:35 PM Eastern Standard Time, RN Beth
writes:
> Hello Bill, Greetings!
Thank you for the warm wishes! They are
> very much appreciated.
I wish you a Happy New Year too!
> I have a question that
is troubling me. Many times I get the
> inspiration you may
know the answer, or at least an educated
> opinion. I wish you
knew how much time and money is spent on able
> bodied people debating
the needs of quads. I hope you don't mind,
> but I have quoted you
in high profile meetings where a lot of money
> is involved. AND don't
worry, I do pass on your web site.
.......Hi Beth, I don't mind. If
someone has specific questions, they can e-mail me directly.
I have opinions on certain quad things, but I certainly don't
know everything and I'm not afraid of saying "I don't know" if
that's the case.
> So, here is the next
great debate:
> In the issue
of non-healing pressure sores which is most effective
> and at what percentage
compared to other variables?
>
> 1) Specialty air mattress
> 2) Assist with frequent turns
> 3) Being up and about
>
> I'm guessing (no idea
if I'm close:) 1) 60 2) 10
3) 30
> Am I close? Each one
has a cost on this planet and I need to
> recommend the best
bang for the buck.
.......Fortunately for me and perhaps unfortunately for you, I don't
have much experience with pressure sores.
Here's what I can tell you... I was on a super expensive and
fancy bed during my initial hospitalization after my accident.
It was supposed to prevent pressure sores, without the need for
turning. However, I got a
pressure sore from that bed and/or from not being turned.
I eventually went to a relatively regular hospital mattress, with
relatively frequent turns, and the sore healed. Your number 3 doesn't make sense for quads, we can't really
get up and about; unless you mean being in the chair and doing things.
Incidentally, I haven't had any pressure sores since my initial
hospitalization over 8 years ago; doing weightshifts while in the chair,
i.e. tilting or reclining all the way back for a minimum of one minute
EVERY half hour, is extremely important (click
here for the importance of weightshifts).
The
BEST way to heal an open pressure sore is to prevent red areas (from
pressure) from becoming open sores. Besides weightshifts and
turning, an ointment called
Lantiseptic
(available from most pharmacies / drug stores) is good to apply to areas
that are red from pressure (technically I think areas that are red from
pressure are stage one pressure sores; such areas are usually seen on
elbows, heels, one's sacrum, and other bony prominences -- it's
generally wise to pad / cushion such areas before redness develops, or
keep all weight off such an area when possible).
Anyway,
bed wise, I'm pretty sure
this link is for the mattress I
use.
> Also:
> We had said
before that you would fill me in on all the primary
> details about your
routines in having excellent health. Remember I'm
> an old veteran nurse.
Any detail you share is for the intention of
> letting someone else
know: Hey, I see you're having health issues
> with xyz, I have some
recommendations about how maybe you could
> better contain the
problem...
These might not work for others, but as a C1-2 quadriplegic on a
vent, here are my basic routines (respiratory,
bladder / urinary, general quad care, and a little more):
RESPIRATORY CARE:
Trach care twice a day. This
requires changing the dressing around the trach (I get a 4 by 4 drain
sponge at night, and a 2 by 2 IV sponge during the day; the smaller
dressing looks better and by alternating sizes, it's easy to
remember/determine if trach care has been done).
We clean around the tracheal stoma with a normal saline &
peroxide solution (approximately 3 parts saline to 1 part peroxide)
using Q-Tips, then apply bag balm (available at drugstores, pet stores,
and in the pet section at Wal-Mart for about $5) fairly liberally around
the trach and stoma with a Q-Tip. Bag balm works. During
a bronchoscopy, my ENT (ear, nose, and throat -- for people who read
this on my website later:) doctor's nurse remarked "you have the
nicest tracheal stoma I've ever seen!"
Upon getting in bed, I receive 5 cc's (a cc is essentially the same as a
ml) of Broncho Saline (240 cc of Broncho Saline can be purchased on the
Internet and delivered for a total price of less than $9 per bottle) by
removing the vent circuit and squirting the Broncho Saline in through
the inner canula. Shortly
thereafter, we use the CoughAssist (in-exsufflator) and change the inner
canula when finished (my inner canulas are technically disposable, but
we have a cleaning system and we use/reuse 5 in a rotation every month).
Then we do a nebulizer treatment (twice a day; when I get in bed
and before I get out, which is also when we do trach care).
Before the nebulizer treatment, I receive another 5 cc's Broncho
Saline. The nebulizer
treatment consists of 0.5 cc of acetylcysteine 20% solution (generic for
Mucomyst and/or Mucosil) mixed with one cc Broncho Saline, all delivered
via nebulizer. The Broncho
Saline and nebulizer treatments loosen my secretions which tend to dry
out when I wear my speaking valve all day (the Passy Muir speaking valve
negates the effect of the artificial nose/heat & moisture exchange
unit on my ventilator circuit, which is why I don't wear the speaking
valve while sleeping, so I can re-humidify my airway).
UPDATE 5/28/2008: I used to use
Broncho Saline as described above, but now I use a total of 15cc (or
15ml) instead of 10cc (or 10ml) of sterile saline with my twice-daily
routines because my ENT doctor mentioned that my airway looked dry after
he performed a bronchoscopy (he actually mentioned it each time after
two separate bronchoscopies). Also, it's actually cheaper to buy (a case
of 1000) 5ml "saline bullets"
HERE. I switched saline products because I was having a hard time
getting Broncho Saline delivered for about $9 total per can. Plus, at
least one or two out of 10 of the 240cc cans were routinely defective
(wouldn't pump). But even if every can worked perfectly, the saline
bullets by the case are cheaper -- plus they are GUARANTEED to work
(they are just little plastic tubes with twist-off tops, and are
dispensed by squeezing) -- there's no pump mechanism that can fail.
Brilliant! :-)
Respiratory continued (as if the above update wasn't there:)...
After nebulizing, we will again use the CoughAssist (I am NEVER
suctioned, the CoughAssist is a superior alternative to suctioning --
check my website, www.LookMomNoHands.net, for details on the "Life
with an SCI" page) and again we will change the inner canula when
finished with the in-exsufflator (CoughAssist).
We don’t always change the inner canula after in-exsufflating
and generally don’t after in-exsufflating when I’m in my chair,
unless it’s necessary, i.e. the secretions didn’t get pulled through
the inner canula, they got partially stuck and are impeding the airway
enough that I can feel a difference.
Usually changing the inner canula will solve this problem, but in
an emergency (if the trach itself is occluded), a spare trach should be
available (a clean used trach should be in a “trach kit” on the
wheelchair and above the bed) to replace the occluded trach and
caregivers should all at least be briefed on how to change a trach,
although in the more than 8 years I’ve been injured, I don’t recall
requiring an emergency trach change (more on this later).
The CoughAssist (which is the updated version of the in-exsufflator) is
used as needed, approximately 5 or 6 times a day, but 10 times wouldn't
be a big deal. Any time I
feel or hear secretions, especially if they are "bothering" me
(making me attempt to cough, or affecting my speech) then we'll
in-exsufflate. Again, we
don't always change the inner canula afterward, only if we think the
secretions didn't come out clean (but we do change it like mentioned
above, as part of the bed routines).
Broncho
Saline
beforehand is optional when in-exsufflating during the day. I
tend to be pretty well hydrated, therefore my secretions don't usually
get overly sticky or dry. The
CoughAssist machine efficiently and effectively clears secretions using
air only (it's a noninvasive procedure, compared to suctioning). Again, see the above referenced page on my website for more
info on in-exsufflating.
That's essentially my daily respiratory care.
To further loosen secretions after nebulizing, we'll use the ambu
bag (squeeze hard and give quick FULL breaths, about 10 or so) and also
do CPT (which stands for chest physiotherapy or chest percussion
therapy, i.e. cupped hands "pounding" on my chest).
I have two LP-10 ventilators, two in-exsufflators, and two ambu
bags (one of each is for bedside use, the others are for chair use).
We change my vent circuits and disposable tubing associated with
the aforementioned products every two weeks.
Initially we were changing tubing every week, but every two weeks
seems sufficient, especially if caregiver's hands are clean before
handling any tubing (or respiratory equipment).
Actual hand washing is important, but for quick cleaning when
hands aren't really "dirty," we keep hand-sanitizer in easy
pump bottles around, and also baby wipes are good for quick hand
cleaning, when hands aren't really "dirty."
The most important times to have clean hands is before handling
respiratory equipment or doing any respiratory procedures, and before
AND after cathing or adjusting the urinary catheter.
But, generally, a caregiver should be careful about keeping his
or her hands clean, and use a baby wipe or hand-sanitizer after rubbing
his or her nose, or touching anything that is "less than
clean." I might sound
paranoid, but I haven't had a respiratory infection or urinary tract
infection (UTI) in well over 3 years (or anything which would require an
antibiotic) and part of that is because my caregivers are careful with
their hands (friendly reminders help:).
That said, occasionally an antibiotic is necessary and I’m not
too stubborn to take it (especially if I agree with the doctor’s
assessment:). However, my
first line of defense (besides a pretty healthy diet supplemented by
colloidal vitamins & minerals and the other beneficial practices
expressed here) is… homeopathy.
(AN ASIDE ON HOMEOPATHY:)
Homeopathy is an alternative method of medicine which treats the problem
based on the symptoms; it doesn’t simply target the symptoms like
certain aspects of traditional medicine.
One of the best things about homeopathy is how inexpensive the
remedies are, not to mention that they won’t interfere with any other
medication you may be taking, so it doesn’t hurt to try a homeopathic
remedy. I mentioned UTIs
above, well at first sign of any bladder or urinary problem, I take a
homeopathic remedy called Cantharis, which usually stops the UTI in its
infancy, before it becomes a problem requiring an antibiotic.
Cantharis can probably be purchased from most health food stores
and some pharmacies for under $10 without a prescription.
Cantharis is also probably in every homeopathic “starter” kit; the
kits usually contain between 10 and 20 of the most common remedies, and
likely cost between $40 and $100 dollars (they usually contain a booklet
which is a quick guide to homeopathy; we've purchased these kits
HERE).
Most doctor visits cost in excess of $100 AND you usually have to
buy prescription medicine afterwards!
(That said, quads need to find a doctor who will familiarize
himself or herself with the quad’s medical needs and be available if
needed.)
I would like to think the preceding paragraph makes it pretty clear that
families can benefit from having a
basic homeopathy kit of remedies as a first line of defense, for use at
the onset of symptoms and beyond (if not treated and “cured” right
away). Our family has had
personal success with homeopathy and our health, and also with assisting
others in our community. With
each problem needing a remedy, homeopathy will either help a lot
(possibly “cure” the problem), help a little, or not help at all.
I’m not an expert, but from everything I’ve read and been
told, trying a homeopathic remedy won’t hurt you, even if you’re
taking heavy prescription drugs or simply taking a homeopathic remedy to
try to help you while you wait to see a medical doctor.
The homeopathic medicines come from nature and are highly diluted
and mixed with either a sugar or milk base (in tablet or pellet form).
The odd thing to me is that the more diluted the remedy is, the
stronger the remedy is (that doesn’t seem logical, but it’s true).
I’ll have more on homeopathy on my website soon (if it’s not
on the “Life with an SCI” page where this will be, e-mail me a
reminder please:).
That was an aside on homeopathy, now back to respiratory care
(incidentally, occasionally my secretions indicate a possible
respiratory infection, and although there are others, a particular
homeopathic remedy that helps me is Phosphorus, which should also be in
almost every starter kit:)…
About the only respiratory aspect I haven't discussed above is trach
changing. I get enough
respiratory supplies to last two months.
This includes a new trach, 10 new disposable inner canulas, and
10 new trach tube holders (the other supplies are related to the
ventilators, and other equipment already mentioned).
I mentioned above that 5 new inner canulas are opened and reused
(after cleaning, of course) every month.
We change the trach tube holder once a week (with a new one).
We keep a couple "old" (but in good condition) trach
tube holders available in case we get the one I'm wearing wet when
washing my hair. As I think
I mention on the "Details of My Care" page (on the above
referenced "Life with an SCI" page) because I use a cuffless
style trach, changing my trach is easy enough to do at home.
When I get a new trach (every two months) we change my trach, but
we don't throw away the trach it replaces.
After the same cleaning process that we use for my other
respiratory equipment (described below)
we then put the
clean & dry trach in a zip lock bag.
Cleaning Process for Respiratory Equipment
[Updated 9/17/2008]
Our cleaning process for respiratory equipment is basically this: hot water & brush scrubbing
(if needed) to remove secretions; then
soaking in a bin of soapy water for a little while; then rinse
thoroughly; then soak in a vinegar & water solution for a little
while, rinse thoroughly, shake off excess water and allow to air dry in
"safe" / clean area (definitely not near a toilet).
Trachs, canulas, and couplings dry on a clean paper towel. The
in-exsufflator extensions and hoses have to have the water "slung" out
(raise the tubes above your head and bring them down real fast like
you're going to throw them on the ground--but don't release them:).
Keep slinging the water out until there are only very small beads inside
the tubes. If "slung" out well, they should finish drying fairly
quickly, but we devised a clothespin "hangar" to which we attach the
tubes for them to finish drying. Incidentally, even though it is
just water, you may want to sling out the tubing outside -- but since
they are respiratory equipment and need to stay clean, and door handles
aren't exactly clean,
I ask my nurses to take
a paper towel or perhaps a baby wipe for the door handles. It
might not be necessary, but people handle the tubing immediately before
changing my inner canula out, which goes directly inside my airway.
To finish my overview on my respiratory care...
I have a couple extra trachs, old clean trachs saved for potential
emergency. If my trach got
"blocked" with a large, sticky or hard secretion, and changing
the inner canula and/or using saline, ambu-bagging, and in-exsufflating
didn't solve the problem, then it's time to quickly change the trach.
I keep one above my bed, and one in a saddlebag on my wheelchair,
along with moist towelettes (to clean hands) and water-soluble lubricant
(and all things required for trach changing) all together in a bag,
which we call a trach kit. I
also have cath kits assembled similarly.
Anyway, we use a Sharpie marker to put the number of the month on
the trach. If my secretions
are particularly odiferous (which happens from time to time) then we may
change the trach and replace it with the newest "old" trach,
as often as once a week. Also,
my ENT doctor said it's ok to use
bactroban (an
antibiotic ointment) to lubricate the trach before inserting it in me.
We alternate
bactroban and a water-soluble lubricant every other week with my trach
changes.
The
bactroban helps
eliminate foul smelling secretions.
When my secretions become discolored (beyond the ordinary
discoloration that is associated with old secretions which have remained
in my chest for several hours, like while sleeping) that’s when we use
Phosphorus to literally "clear up" my secretions -- they
usually become white/clear again after several doses of Phosphorus, and
getting the old secretions out (e-mail me if my guide to “homeopathy
& the Internet” isn’t on my website).
Ok, that's respiratory, pretty much everything.
BLADDER / URINARY CARE:
I was discharged from Shepherd with instructions to use a straight
catheter intermittently every 4 hours.
This works ok, if you don't consume a lot of fluids. My daily fluid intake is about a gallon -- seriously.
Even though I now eat a normal diet, we kept my gastric tube so
that my caregiver or nurse can give me water & meds while I'm
sleeping. I get about 1,000
cc of water (a liter) while in bed, and a full glass of water with meds
3 times while I'm in the chair. Add
in what I drink with meals, and I also sip water all day long from a
Camelbak drinking system (available at stores with outdoor equipment,
and bicycle shops, etc) and it's pretty easy to stay well hydrated and
consume about a gallon of healthy liquids every day (water, orange
juice, apple juice, milk, Gatorade, etc -- not soda, tea or coffee, one
of my nurses said extra water needs to be consumed for every caffeine
drink that is consumed).
With such intake, the output has to essentially match.
Therefore I remain cathed virtually at all times (although I can
go for several hours without voiding my bladder).
We remove the catheter before transferring and bathing, but
otherwise the catheter remains in me almost all the time.
This is not an indwelling Foley (there's no balloon on the end of
my catheters). When I'm in
bed, I don't move around a whole lot (aside from being turned) so we
just occasionally check the cath to see if it's still in far enough to
be effective (caregivers please clean your hands before & after
adjusting:). When I'm in my
chair, we use a bungee cord to hold the catheter's bag in place (one end
of the bungee hooks to the bag, the other end hooks to my chair). This works well. Occasionally
the catheter will slip out a little too far to work, but we adjust it
and I'm back in business (please clean hands before checking and after
adjusting:). Otherwise, we
just drain the cath bag periodically throughout the day and I can drink
all I want!
By taking the catheter out for transfers and bathing (and cleaning it --
no, not with my respiratory equipment as mentioned above, cath stuff has
it's own process, basically: rinse catheter thoroughly with hot water,
and "store/soak" it in its own basin of vinegar & water
until needing it again, rinse well after taking it out of the solution,
before using it again; the catheter bag gets a mild bleach solution
squirted inside of it, and it's rinsed thoroughly inside and out, and
hung up to dry before using it again -- although it can be wet, it
doesn't have to finish drying before using it again) anyway, by removing
the catheter several times a day, and using a baby wipe to clean my
privates before cathing and after removing the catheter, we're able to
break the bacteria "path" that often results in frequent UTIs
for people with indwelling Foley catheters.
Incidentally, we usually use a catheter for one week before
throwing it away and opening a new one.
My cath bags are usually replaced once a month.
That's my bladder & urinary system care.
Incidentally, good hydration is very important for quads.
Kidney failure is the number one cause of death in quadriplegics
(so I'm told). But also,
UTIs and kidney stones are common in quads also.
Having lots of fluids to flush the kidneys and urinary system
probably helps prevent UTIs and the formation of stones.
I can't say that for sure, but I can say I very rarely have a UTI
(it's been well over 3 years since I've needed an antibiotic for
anything -- thank you God:) and although we haven't had my kidneys &
bladder checked for stones, I haven't experienced any mysterious
dysreflexia or had blood in my urine, which could indicate a problem
with stones. I'm told that
when there are stones, either dysreflexia will persist with no obvious
reasons (a full bladder is the number one cause of dysreflexia;
dysreflexia is simply a rise in blood pressure which results in a
possibly reddened face and perhaps a headache, red "splotches"
on the upper chest, and/or neck and face -- dysreflexia is an autonomic
response that quadriplegics experience when the body has a pain, it's an
alert system since we often can't feel that something hurts, like
able-bodied people can -- and yes, dysreflexia can be a serious
problem).
GENERAL QUAD CARE:
Respiratory and bladder/urinary care I addressed above.
Those are extremely important because those systems are where it
seems most infections occur. But other aspects of quad care are important, too.
Bowel maintenance. I sleep through the bowel program. My nurse or caregiver does a bowel program (BP) every other
day. The nights preceding a
BP, I eat "yogurt & sticks" -- sticks are Fiber One
cereal, All Bran cereal or Bran Buds -- the combination is not bad and
can be jazzed up with fruit like strawberries or blueberries:). Yogurt
is wonderful for regulating the GI (gastrointestinal) system, and
"sticks" provide extra fiber to really clean me out and ensure
a successful BP. On nights
not preceding a BP, I'll have a yogurt drink or eat a yogurt.
The yogurt provides "good bacteria" (most yogurt has
“live active cultures” which can help reduce or prevent symptoms
associated with upset stomachs; and I’ve heard yogurt helps prevent
yeast infections, and I’ve never had one of those, although that has
more to do with me being male than me eating yogurt:) and yogurt is
somewhat of a lubricant which helps ensure an easy BP after another day
of eating (since I eat two days of food before my body is emptied, I put
yogurt in between the two days:).
I basically eat one large meal a day, and some snacks.
I always have a banana or some fruit (a peach, plum, pear,
nectarine, orange, grapefruit, grapes, strawberries, an apple, just some
kind of fruit) when I get up (I get up about 3 p.m. and stay in my chair
throughout the day and I generally work on my computer all night until
I'm put back in bed about 6 a.m. -- doing frequent weightshifts allows
my body to tolerate 15 hours in the chair).
Anyway, a banana (a banana is my usual, but an apple with crunchy
peanut butter is a definite favorite:) after I get up, then usually a
snack with my 5 o'clock meds. At
this time, I also drink orange juice mixed with two tablespoons of
"Buried Treasure" (a colloidal vitamin & mineral solution;
the citrus flavor mixed in OJ is not bad at all).
Some of the colloidal solution has fat-soluble vitamins and/or
minerals, which is a good excuse to eat something fattening for my snack
with the colloidals in OJ! (The
aforementioned apple with peanut butter provides PLENTY of fat:)…
Eating basically one meal a day, plus snacks and dessert, allows me to
maintain my body weight through portion control.
By not eating 3 meals every day, I don't take in too many
calories, and I don't gain weight (it's actually easy to lose weight, if
necessary, by reducing the sweets and overly fattening foods, and I
don't burn many calories through exercise;).
This also allows my body to not get ridiculously full and makes
tolerance of only having a bowel program every other day, ok.
We used to do a BP every day.
For me, and many quads, it's not necessary.
Some quads do a BP three days a week.
It largely depends on your intake and what works for your body. Also, for convenience, sometimes we'll "double up"
on the BP. This means
having it on back-to-back days, so that on a particular day that I might
need to be in my chair when we would normally be doing a BP, then we
don't have to concern ourselves with the BP that day.
Doubling up is also good if I happen to eat a TON (Thanksgiving,
anyone?:).
Other quad care aspects... daily bath in bed.
I sleep through all but the washing of my face and hair.
We use a "shampoo basin" to wash my hair in bed
(available at:
www.allegromedical.com).
When my hair is cut pretty short
it can be effectively washed with washcloths when I'm in my chair.
While bathing, my caregiver or nurse also checks my skin for red
areas or open areas (usually, there are none, thanks to weightshifts in
the chair, and appropriate padding of bony areas such as elbows both
when in the chair and in bed). We
do range of motion on both my arms and legs while in bed.
Since most of my care is done in bed, that's when we choose to
have our nursing care (we're allowed 40 hours a week, largely because
I'm vent dependent) which we split into 5 eight hour shifts).
This is partly why I go to bed at 6 a.m. and I'm put back in my
chair at about 3 p.m. (nurse usually works 7 a.m. to 3 p.m.).
Family & friends caregive for me at all other times, but
there's much less to do when I'm in my chair.
Occasionally I need the catheter adjusted while I'm in my chair,
or to be in-exsufflated, but that's essentially it for caregiving issues
for the approximate 15 hours a day I'm in my chair.
I get meds and need to eat, but I'm relatively low maintenance
when I'm in my chair.
Other physical therapy... aside from the aforementioned passive range of
motion in bed daily, I also try to get on my
tilt
table for about an hour session every week (more frequently
would be better; daily would be best, but my schedule won't won't
currently allow it). Standing up and bearing weight is good for the total body, from bone health & strength to organ function. Humans are designed to be vertical
at least part of the time (I was once lectured on the benefits of using a tilt table, and the gist is it helps
everything!:). My legs spasm quite a bit, especially when I'm
first put on the tilt table. I think the tilt table spasming is
largely due to straightening my hips more than they usually are, even
when I'm on my back (i.e. supine) in bed. My legs also spasm when
being ranged -- they aren't exactly passive and usually fight my
caregivers pretty well, which has helped them maintain surprisingly good
muscle tone. They don't spasm much when I'm my chair, only
occasionally. My whole body/torso spasms occasionally when I'm in
my chair, as if my body wants to straighten out. That's how I
broke the back off of my wheelchair several years ago. My arms
inexplicably do not spasm.
AN ASIDE ON PARALYSIS "CURES"
I
fully anticipate some type of therapy or combination of therapies that
scientists are trying to develop (what people think of as
"cures" I think of as therapies that will restore some
function -- a full "cure" is the dream, but early
"cures" are focused on restoring spinal cord connectivity to
enable function, the extent of functional recovery will vary -- I figure
the longer one waits, the better the developed therapies will be -- but
some are available via clinical trials and otherwise right now) anyway
at some point, I anticipate regaining movement in my extremities
(hopefully total body) but some pretty intense physical therapy will be
required to get things truly usable and functional again. I don't
mind hard work -- with the Good Lord's blessing, scientists are and will
continue to develop therapies to restore function with the ultimate goal
being the elimination of paralysis! If you want to know more about
what's going on with regard to "cures" for spinal cord injury,
click
HERE.
* * * * *
That's an overview of just about every aspect of my care, and things we
do and I do to stay healthy. That's
enough quad care details for now... (more e-mail below Beth:)...
> Do you know anyone who
uses an MI-E who functions as a quad, but is
> not a quad? (i.e.
Trach capped all day and Trach with BiPAP at night)
> It seems this would
cut down on assistants for suctioning? Can a
> person not on a
ventilator use it 24/7 if access to Trach via dome
> possible?
.......Ok, I don't have direct knowledge of people (non-quads) using a
CoughAssist by themselves as you mention above, but yes, that's very
much possible. Even without
a trach, if someone has continuing difficulty expelling secretions, a
CoughAssist can benefit them greatly.
I know the CoughAssist has a mask attachment (for people without
trachs) and has an automatic setting, which can enable a relatively
able-bodied person to administer this to himself or herself, and help
that person cough up secretions. Still
more below!
> I am also willing to
accept any comments you have that will help my
> quad friends.
See, I have some desiring more independence from
> skilled nursing care.
I feel a duty to provide the best PT/OT or
> other therapies
possible for strength and endurance PLUS all
> reasonable medical
equipment to accomplish independence.
I get
> scathing letters from
nursing agencies saying my recommendations for
> independence, which
causes a reduction in nursing hours (and thereby
> reducing their bottom
line) are wrong. Bless me, I have to defend
> every letter and every
recommendation in order to be a valuable
> advocate. This is why
I depend on your opinions. Simply put, you
> have more access to
GOOD information than I do. It is a balancing
> act and sometimes a
struggle, but I work with good people and we
> strive to do good
work.
.......Well, thank you for thinking highly of my opinions.
Things I expressed above are largely from my own experiences and
some research, finding routines and systems that work well for me, and
it's stuff I share with others. I
share the info as possible suggestions of how to do things, but some
quads require different things and do things differently.
I'm just sharing what works for me, and offering my relative good
health (lack of antibiotics and a fortunate avoidance of
hospitalizations:) as evidence of what we're doing being beneficial for
me as a ventilator-dependent quadriplegic!
Bill Miller :-)
C1-2 Quadriplegic with a 206 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
My blog:
http://powerwheelchairusers.blogspot.com
Business website:
http://www.ikanbowler.com
Personal website:
http://www.lookmomnohands.net |