75 years old and have severe hemophilia B. I infuse twice weekly, 5,000 IU. When
I was growing up I thought that I would not be able to walk in my later years
due to the hundreds of leg injuries I sustained as a child. I still walk but
have had other difficulties. Frankly, I was not prepared for advanced age. In
the interest of helping others avoid some of the pit falls, I would like to
give some advice.
and foremost, you must own yourself. You have a disorder. I remember my mother
telling me when I was six or seven years old, “Richard, you were dealt a
bad hand, make the most of it.” Hemophilia has been referred to as the “royal disease.” It was in the German, Spanish, English and Russian royal families in the 1800-1900s. I believe it is called the royal disease because
it is a royal pain! Hemophilia is a chronic disorder that can, in 15 minutes of
sustaining an injury, become critical. You must personally own it and learn how
to work with it.
fall. Get handicapped tags for your car. Buy a four-prong cane. Get rid of your
pride. You may be in a wheelchair, crutches, braces, or have a terrible limp.
So what? Hold your head high and remember that there are people who have it a
lot worse than you. Purchase a fold up chair that has side arms. The arms will
help you get out of the chair. Keep the foldable chair in your car. Purchase a
lift chair to help you get up for home use. They are very expensive, but you
can buy them for a deep discount on Craigslist.
all of my original joints except for my right shoulder. Several years ago I had
to undergo total reverse shoulder replacement. The reason for the replacement
was a loss of cartilage in my shoulders. That loss was caused primarily by
lifting myself from a sitting position using my arms instead of my legs. I also
had to lift myself from my many sports cars. The sports cars are fun but sit
low to the ground, and we unknowingly injure ourselves getting in and out. So
lose the sports cars and get a minivan. It is my experience that the best
minivans for impaired people are the midsized like the Ford Escape, Cadillac
SRX, and BMW X3. A good test is that you want the seat to be butt level. You
also want the vehicle to have wide doors to allow easy entry and exit.
falls. When walking, even for a short distance, never try to carry something in
both hands. You need a free hand for balance or to steady yourself. Put handrails
on all steps, even if it is only two or three. Additionally, put grab bars
anywhere you may need them. I have nine grab bars in my bathroom. I also have
them at every step down in my home, both inside and outdoors. Make your home
walking, never, ever step out of someone’s way. Side stepping is dangerous.
Stand still and let the other person walk around you. Never walk backwards for
any reason. You cannot see what is behind you. Learn to fall down. It’s called
tuck and roll. If you feel yourself falling, tuck your arms close to your body
with one hand over the other and turn your body so you will land on your
shoulder. Your shoulder will take a hit better than your hip. Don’t try to
catch yourself. That is how elderly people break their arms or worse yet, their
wrists. If you are walking on grassy surfaces, either use your cane or hold
onto someone’s arm. Divots in grass can drop you in a flash.
be your own advocate. Don’t listen to other people who say “It’s going to be ok.”
If it’s not ok, there is only one person in the world that will suffer the
consequences: you. If you are not comfortable with anything, assert yourself
and say no. If you are mistaken you can always have a do over. Learn as much as
you can about your disorder so that you know more than anyone… maybe even your