Back to School, Symptoms, Jodi DiPiazza



Wow, I have been so behind
this week, I have been meaning to blog since Monday but I have been
busy and tired and… Just not all there I suppose. So let me try to
catch up a bit.

Monday I started a class
at RCC (Local JC) and even though I got dropped off 5 hours early to
my 1.5 hour class and even though I had to wait 2-3 hours after class
ended to get picked up, it was well worth it. It was nice to get out
of the house and be around people in a non-hospital setting. No
nurses, sick people, doctors, no hospital noises, no hospital smells,
just “regular life”.
It was tough getting
around campus because my spasticity has been so bad this week, my
legs are so tight, it’s so hard to walk. The noises also got to be as
I am really sensitive to noise so all the screaming KIDS who just
barely made it out of high school were making me crack, especially
since they are building an entire new building right now, so that is
pretty noisy (construction). Surprised my heart is still working
after all the beats it skipped…

Man, a new building, life
went on. Feels weird, I disappeared for 2 months (In Hospital/Rehab)
and have been in and out of the hospital all year. Since I left they
are building up the school, they built a new Kaiser hospital, shut
old shops down, so much has changed. The city is like a huge
organism, ever changing, and slowly growing. Walking around feels
like walking through a dream, it feels like I am in a different time,
a ghost, it feels weird… but nice.
At first I was worried
that I would stick out among the students with my… disability. But
as I sat there people watching, I realized just how many people were
going through their own battles. On Monday I saw five people in
wheelchairs, Maybe 3 cane users, one blind student, a girl with some
sort of gate impairment, I met a girl with a mental disability, and
then I saw a few students who I knew had an issue but it did not LOOK
bad. If you were not looking for it you would not see it, but
anyways, mostly gate issues, minor limps, perhaps an injury? Although
because it was so hard to see, that to me indicates they have had the
issue for a while, the body learned to compensate for it, so I am not
sure. Thinking too much. Doesn’t matter, point is, I am not alone, so
that made me more… comfortable. Maybe that is the wrong way to put
Class was OK, I signed up
for the only class they had left, some HTML/CSS Web Design class, (Monday and Wednesday), So far it’s not
that interesting but it can only help with the blog and all I wanted
was to be around people anyways, and to test my cognitive ability.
Not so great but I will make it work. Like they say, the brain is
like a muscle, if you don’t use it, you loose it. And I have to say,
it feels like my brain has been cramped up in the back seat of the
car for an 8 month drive! Time to get out and stretch!
Oh, before I move on,
Sunday was the “Night of too Many Stars” hosted by Jon Stuart on
Comedy Central. It’s a telethon fundraiser for Autistic children, I
watched it, and… it was just, good. Not the comedy but what they were
doing for these kids. Then they presented Jodi DiPiazza, she is 11
years old, and she is autistic. She could play piano amazingly, in fact,
when they were telling her story on the big screen, the background
music was her playing Cannon in D, my favorite song to play (when I
played), so I was hooked already. Then she announced that she was
playing/singing “Fireworks” by Katy Perry, her favorite singer.
She started playing/singing and wow, I did not realize how wide the
spectrum for Autism was! Then Katty Perry came out and started
singing with her. It was so touching, it kind of got me, then Jon
Stuart came out and he kind of cracked, then it just really got me.
Imagine how that little girl must feel, after all her troubles, she
was singing and playing piano in front of hundreds of people with her
favorite singer. Doctors said “don’t expect much from her” yet I
don’t think I will ever get to feel that feeling in my life. Amazing.
If she can do that with autism then there is no excuse for me that
will satisfy ME… Watch the video at the end of this post to see
Jodi Diazza and Katy Perry sing “Fireworks”.
Wow… Hard to move on but
lets talk about my symptoms. Now that I have a neurologist who knows
what he is talking about when it comes to MS, I have to make a new
list, no more simple questions, now I can ask anything and not worry
about being shut down or told “This is the course of the disease,
deal with it”. I have not made this list yet but let’s go over some
of the things that are bothering me lately.
Fine Motor and Coordination – Fine motor skills are not as good, my
coordination sucks as well, keep hitting keys that are one key to the
left of what I want to hit. For example, I hit “Caps Lock”
instead on “A” or “A” instead of “S”.
– Not diagnosed but my eyes can’t move from left to
right or top to bottom smoothly, they move in a skipping motion.
– This has not been great. I feel like it is vestibular, when my
eyes are closed and I move my head too fast I feel dizzy. If I stand
to fast and don’t let myself get used to my position in space, I feel
dizzy and can’t walk strait. I find myself falling back into my seat
when trying to stand. Perhaps it is also an issue of my legs not
moving the way my brain is telling them to in order to balance
because my vestibular balance is not great but it still works.
/ scare reflex
– Every little noise makes my heart jump, I hate
this! I used to be the guy who could sit through a horror movie and
not jump once, now? Forget it!
= I knock everything over, make a mess, and my grip just fails at
random. I will be holding, say, my cell phone, looking at it, and
then it just drops like I let go.
– Not sure what this is yet but I feel so unsteady! My hips or legs
will start wobbling like I am trying to balance on a cable. My hands
will shake. If I try to touch my fingers together some of them will
shake. Its like my body can not tell how to center anything, it
overshoots it, then realizes it went to far, tries to move back,
overshoots agin, and so on and son.
– This has been so bad this week. I almost can’t walk, I though I
was going to fall at one point the other day at school! Been taking
my Baclofen and stretching, but it barely takes the edge off! Oh and
even my neck cramps up in the evening, not sure if that is related or
not but it has been an issue.
– This has been so bad lately as well, today I actually had to stop
my recumbent bike exercise early, my leg was shaking so bad as I
tried to petal that the bike was just shaking too much. I could not
move the petals in a smooth motion.
– Too much to really sum up, everything from memory issues to
leaving the ends of words out when I type. I will have to do an
entire post just on that.
– It’s so hard to talk. I slur or can’t find the words I want. I
know what I want to say but I simply can not say it.
it has been an interesting week, I really can’t wait to see my
neurologist because I have a lot of questions for him. I have to work
on that list and maybe call about new glasses, mine do not help too
much now, only at certain distances. I will try to get back on track
Monday. Oh, It looks like I have dial a ride now, so I will use that
for school until I feel ready to drive again, just waiting on my
vision as of now… I hope new glasses will help but I am trying to
wait a couple more weeks, what if my vision is still changing?? UGH,
I will post soon!

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