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One Step at a Time
Betsy and I have developed the following 10 Step Program to help
others who have suffered a Spinal Cord Injury. As you can see from
the steps, the sooner you begin to work on yourself, your injury
and your situation, the better the results.
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01 |
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Understand your injury – become
knowledgeable about all the research and breakthrough techniques
that are currently in trial. Ask for any new medications,
steroids, hyperbaric chamber exposure, healers, etc., that could
possibly help your SCI
injury. If you are able to travel, you may want to consider seeking
treatment in Israel, Belgium or China, where experimental work is
being performed. Usually
these techniques are best administered in the first few days after
injury. I cannot personally recommend any particular
procedure because I have not witnessed any of these breakthroughs,
but many seem quite promising. Even astonishing. In my opinion, they
are about to happen.
Please take a look at the recommended web sites in our resource
section.
I particularly recommend www.scirecovery.com.
The Christopher and Dana Reeve Paralysis Research Center has a particularly informative
Research Guide available by request on www.paralysis.org.
You can also call them directly at (800) 539-7309.
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02 |
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Understand your head - Understand
and deal with your frame of mind. Depression and shock must be dealt
with as soon as possible. Through your research you will see that
today there are more cases of people who do recover. It is also clear
that a cure for paralysis is on the immediate horizon. These facts
offer immediate hope. Ask for a knowledgeable counselor to work with
while you are in to the hospital. Treat depression with counsel and
prescribed medication. BE VERY CAREFUL ABOUT MEDICATION! YOU ARE
AN
INJURED ATHLETE ON THE ROAD TO RECOVERY! Universally, everyone that
has had an injury like yours and possibly even more serious than
yours, is better off today than they were when they were initially
injured. So take heart in the knowledge that you will get better.
A LOT BETTER!
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03 |
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Build your team – Put
different people in charge of different issues: A) Payment - deal
with insurance and coverage issues. Make your insurance caseworker
part of your team. Bring them in and let them understand your pain,
concerns and need for help. If you have no insurance speak to your
hospital caseworker, different states have various programs that
can help. B) Researcher - someone must study and document the web
information and other resource material on Spinal Cord Injuries.
An excellent place to start is www.likemike.us. Make a loose-leaf
notebook and keep records of all research and articles. C) Research
- understand and research all of the medication you are given. Many
side effects are not worth the risk of taking these medications.
D) Roles - try to define roles in the family and your support team.
Your spouse should not be your nurse or professional care giver;
this can quickly jeopardize your relationship. If financially possible
hire a caregiver (see 6 below) and shift responsibility that you
once commanded to others in an orderly fashion. E. Hire a Coach that
will take over your rehabilitation program when you finish your out
patient care. Get involved in established programs that are currently
in existence i.e. Project Walk, that you can participate in.
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04 |
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Make your home accessible – Reevaluate
your living environment when you leave the hospital so you can function
as easily as possible. Be careful about overdoing it or making too
many changes too soon. I made the mistake of moving from our beautiful
home which was three stories. I should have considered A. Installing
an elevator. B. That I may recover enough to walk up stairs. C. That
we could have reconfigured the house so that I could live on the
first floor. Talk to others and get ideas don't limit yourselves
to the most expeditious remedy, sometimes the best plan is to defer
making decisions for a while. Web sites to investigate with good
information are:
www.resna.org/taproject/policy/community/HMRG.htm
www.wheelchairramp.org
www.bobvila.com/ArticleLibrary/Task/Designing/AccMultiStoryHouse.html
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05 |
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Evaluate your financial situation – You
are facing a new financial challenge. What can you do? How, when
and with whom? Look at your life insurance policies and see if you
can take advantage of a disability clause for monthly income. Check
to see if you qualify for disability benefits on your mortgage, telephone
service, utilities, government housing, etc. You can apply for financial
assistance through local service organizations that offer assistance
(Lion's Club, Rotary Club, etc). If your injury was the result of
an accident and you were not at fault, hire a personal injury attorney
to represent you in a law suit. This is the time to collect what
you deserve as the cost of a debilitating accident is much more
than one can imagine. Consider starting a non-profit organization
which can be managed by family or friends to raise money for your
rehabilitation and living expense. If you had a job and can not continue
to do it, ask the Company if there is another job that can be performed
by you. You still have a lot to contribute, and your company can
still benefit from your previous experience. I must interject here,
that education should be set as a priority, if you have not completed
high school, DO SO! If you can go to a college, DO SO!
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06 |
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Find a qualified caregiver – Find
a qualified caregiver. This may be the most important step, depending
on your level of injury. A caregiver can be someone who comes in
for an hour or two a day or someone who lives in. In either case,
and certainly in the latter, you should find someone compatible as
well as knowledgeable. There are agencies who can find caregivers
for you, but they charge extra. What I have found is that
the best caregivers are usually
found by referral. You may want to call the local VA system. If they
have a SCI unit, ask if they can refer someone (our local VA trains
caregivers).
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07 |
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Re-evaluate your physical condition – Around
the time that your hospitalization comes to an end, start to re-analyze
your injury. Where are you strongest? Are you
affected on one side more than the other? What about sensation? What
things do you recognize as the things you want to get back
first, like brushing your hair and teeth by yourself? Set goals in
relationship to the degree of the best return. Personally, I didn't
prioritize getting my hands back, but a friend with the same injury
did. He worked to bring his hands back by playing
the guitar for hours on end. Today, his hands are almost normal.
Mine are not, so I now work harder on those small muscles, trying
to strengthen and bring them back. By no means should you ever think,
"this is as good as I am going to get." Recovery continues
for years. You may plateau, you may slow down, but you will
continue to heel!
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08 |
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Recreation – Get back
into life's fun sports. Try tennis, skiing, cycling, basketball,
rugby, swimming, surfing and anything else you can think of. In many
communities there are centers that organize disabled sports teams.
Special equipment is made that can bring your favorite sport back to you. Here again the internet
can be your best source of information. Most spinal cord injuries
are sustained by younger people who are out in the community creating
and finding diversions. You will be able to compete.
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09 |
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Striving for independence – Independence
is important to both the injured person and the spouse, partner and
family. Clearly I would be wrong to say that dependent people don't
have
full lives.
But how much independence will be possible is going to be a function
of ability and desire. I can only state that it is paramount to strive
for the maximum amount of independence. Fortunately there are
a multitude of tools and instruments that facilitate this. For example,
one of the first things to do is to get back behind the wheel and
drive. There is information available and specialists who can help
you choose the right
car and driving controls for your injury. It's also critically important
to choose the wheelchair that's right for you. It should be one that
enables you to grow and one that can change with you as you increase your motion
and reconnection process.
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10 |
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Making sense of it all – Making
sense of it all - finding a purpose and reason for your journey.
Making sense of it all will help open you up to all possibilities.
Re-evaluate your potential and life goals. Find your passion again
and share it. Visit a recently injured SCI person and share your
hope and knowledge. Keep a journal, a record of your daily efforts
and recovery progress. Take pictures and start thinking of how you
can give back. There are 30 people
injured daily in the USA, so someone needs you to stand firm, to
tell them that you could, how you did and where your are today. It
all
comes in a package called "hope" for the newly injured.
While waiting for a cure, we are fighting for those who are injured
now. We are getting them ready, prepared for the cure, so no
one will fall through the cracks. You can't wait for the cure,
you have to act now. There are no final answers. Take the journey
from Catastrophe to Conquest.
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