Dear Hilary:
Thank you for your lovely bit of humor. I really enjoyed it. As you know I
have been battling the "What are these things going wrong?" When I found out
that I was diagnosed with Parkinson's Disease, I was thankful I finally had my
question answered. "What is wrong with me", as it seems to have taken forever
to get a few answers. I still am looking for answers and have yet to have
gotten to many. Some I get off the internet. but some I try to get from here.
PD List. Some conversations are so far over my head that I just get lost and
give up. I''m at square one and haven't a clue. I did'nt know That there are
eats and don't eats. I just found out quite by chance some of the problems I
can have and not have. This is an experience but not all enlightening. I
wish I didn't have this disease as I'm sure no one really wants it. My ex-
husband commented to our daughter, well your mother probably has Parkinson's
for attention. I would rather just hid away, no attention if I could trade
this "Uninvited Guest" I would trade for just staying low, hiding form
everyone an everything. But you have to know my ex to know how he thinks.
He doesn't run my life anylonger. But right now I feel that PD does. In
everything I do, PD has a hold. I ache and have pain. My feet (I know) and
ankles are still so sore and swollen, the color changes everyday. Is this
normal to PD? I don't sleep is this normal to PD normal or is it a reaction
to PD? I have this rash, I don't know but it covers my face I never had
anything like this before and in my hair. It is like this "Dan the Dandruff"
the drandruff. My Memory is gone I mean GONE. If I don't get a hard copy I'm
lost. I can't drive, About half the food reaches my mouth and I have had
exemplary manners now just hose me down. I walk along and stop, what is stop
in the middle of walking. No one explained even a small portion of this to
me. Of course Larry, Curly and Moe need to keep their feud going. I am
furious at who? Not a one explained what this illness was like. They didn't
bother about physical systems, but the emotional stuff was never even looked
at. My GP tells me jokes, My Neuro Doc has no time at all, Due to his
accident is only seeing 4-5 patients a day. Well, I guess I am not a patient.
But he is fairly confident that PD is not responsible for Feet and Legs. I
bought a no nonsense book about Parkinson's Patients and Caregivers and I
found it in the book. Now does that mean I can now diagnose myself and save
the money I would spend for a ?Doctor?. I am very disgusted, but I can walk
away and find a new doctor or doctors. I guess the information not received.
From anyone or anywhere. I have decided to take the lead and get the
knowledge, even because my brain cannot retain. I will read and re-read to
force some knowledge. Also, thanks to you who helped me. You are not
forgotten.
But one thing I willl explain not apologize for. With my abusive background-
child-adolessent-adult I have a happy go lucky attitude, I have toys and dolls
and bears, cribs etc. and people who give me pleasure. I have worked hard to
sweep away the pain and whatever happens I will continue to be happy. Maybe
not overjoyed with whatever is happening for awhile, but after years of
therapy I can deal with what has been handed me. PD is not a punishment, my
lot in life, nor my damnation in this world. It just happened, who knows how,
I had a 2 pretty good thumps to my head, I lived in the middle of a corn field
I don't even what to start with what may have been in the Well. With my family
it is very hard to tell if geneics would play a part, I don't know. But it is
not that important to me. I have it, lets go forward, a cure would be nice but
I would hope they know that. I am scared but not to a degree that I cannot
move, If my life is to be messed up, shortened, physically challenged so be
it. But I will do what I can do today. I usually let people walk on me.
Sometimes the Victim
returns for a trying repeat performance. I've had cancer and survivue, abused
as a child and and adult in various ways, my son committed suicide, I'm a
recovered alcoholic/addict/smoker and I'm still alive. so I guess I'll keep
doin what I have been doin. My Teddies, Dollies, Elmo's, Cows, Pigs, Moose and
a few Beanie Babies(I really can't see the big thing about them but I needed
to get a few, anyway, they bring me joy. All of them do I talk with them like
my children. I have obtained a Port a-crib, a cradle, I had a ships trunk I
have wagon, and wheel Barrows, chairs, gliders, you name it, they have it. So
do the dogs and cats. I find they treat me better than
most humans. I only have one favor and for the most part it has been done.,
but if I need an answer to a question please answer the question. Maybe in a
way I could understand. Something happened in the last 2 years, to my brain
it is like a brain drain, a nervouse breakdown. Thank you for listening to
me, you are very important to my recoverey
TTFN
Gina
Hugs to those who want them
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