Primary Lateral Sclerosis (PLS)
The disease that Lee was diagnosed with in the spring of 2001 is
Primary Lateral Sclerosis (PLS). The only diagnosis for this diseases is
through elimination of all other neurological diseases. This is a rare
disease that affects the upper motor neurons. Simply - his brain is not
talking to his body. He has a difficult time walking and no sense of
balance. This disease
is NOT life threatening (thank God) but life style. As it progresses he
will have less and less use of his legs. Unfortunately, it will also
begin to affect the rest of his body, too. Right now he is using a
walker to walk and really just shuffles. But as he always says, "I
just keep putting one foot in front of the other, fall down, get up and
do it again." He was issued a wheel chair but is reluctant to use
it. A good website that is devoted to this disease is "Spastic
Paraplegia Foundation, Inc.".
His sister, Carin, and her husband, Jim, and their children all pitched
in and bought him an electric 3-wheel scooter to help get around in. It was such
a surprise when Jim, Jr., from Florida drove up with it. We have built a ramp
onto the back porch so later he can take it into the house. The family was
able to purchase a 1992 Chevy Astro van that had been converted with a lift
to carry the cart with. Marge
is looking forward to it for then she can get him away from the farm and
do things with her.
Mark's father received an electric cart to help him get
around but unfortunately passed away shortly after. When Mark and
Tammy went up to CT for the funeral he requested and received the cart for
Lee to use. This one is smaller and fits much better in the van.
It works real well on flat surfaces like stores, restaurants, and such.
So Lee uses the 3-wheel cart on the farm cause it is much more stable in the
grass. He is out chasing the goats when they get out and fixing fence
where he can and keeping active.
Update........ In June 2009 we became
"official old folks" as we started receiving Social Security. With it,
we decided to buy a new handicap van. We (and the bank) bought a 2009
Chrysler Town & Country with the Braun Mobility conversion. It has a
folding side ramp & the rear of the van lowers for much easier access.
The front passenger seat comes out so Lee can be right up alongside
In July 2010 VA gave him a new
electric chair. This one is narrower for easier use in the trailer and
it power reclines to all sorts of configurations. With this, if need be,
he can sleep in it. It came at the most opportune time as his "walking"
even with a walker was very unbalanced. For safety, he’s giving up even
trying to walk.
And with VA’s help we have converted
our bathroom into handicap accessible. They took out the bath tub and
vanity and put in a roll-in shower and a pedestal sink. Now Marge puts
him in the PVC shower chair, rolls him in, takes the wire brush to him &
scrubs him clean and dries him off. No fear of falling. With the
pedestal sink, he can roll his new chair right up to it and brush his
teeth and get cleaned up.