Thank you for sharing the very good info about Flumadine. I get
a flu shot every year like clockwork. I started getting them, on the
advice of the MDA, in the '70s. They even used to pay for them! Good
luck getting them to help pay for anything now!
I wisely didn't get into the discussion with Andrea. Diplomacy
was never my strong point. She made me quite angry and upset. You all
did great dealing with her.
As for your question as to whether or not I would preferred to be
cured, I have mixed feelings. Most of the time I feel like I wouldn't
take the cure because I've finally found a certain degree of comfort and
peace with my disabled self after my entire life (41 years) as a disabled
person. Frankly, I wouldn't know how to be an able-bodied person. I've
spent my whole life learning how to survive and function as a disabled
person, I'd be like a fish out of water.
Blane
:-)
On Thu, 16 Oct 1997 19:33:12 -0500 brew-parrish(AT)juno.com (Valerie
Brew-Parrish) writes:
>Hi Carol,
>Yep! It does work! I worked at a health service at a university.
>Students were coming in by the droves with flu, colds, etc. I felt
>like donning a mask as I am still susceptible to nasty germs and I get
>about four colds a yr. which isn't too bad really. Anyway, I asked the
>doctors how they stayed so healthy. The answer stunned me. They said
>they were swallowing their Amantadine! I asked what it was and they
>said it was an anti-viral medication. I asked why I had never been
>given Amantadine. The reason is, by the time a patient gets to the
>docs office it's too late for the Amantadine(Symmetril) to work. It
>has to be taken within 48 hrs. of symptoms. Well, I thought this
>prescription should be in my medicine cabinet! I called my doctor and
>she agreed. I did some research and discovered Amantadine has been
>around for yrs. Since World War II. Then, Accent on Living had an
>article about how Amantadine was used for pps. A few yrs. ago,
>Amantadine was improved. Now it's Flumadine. It doesn't tear my
>stomach up as bad as the Amantadine. It I feel a cold or if Tara or
>Rick come down with a virus, I start taking the Flumadine. I have been
>saved from many colds this way although it doesn't work all the time.
>I think you should talk to your doctor about it.
>I have been thinking about you Carol. I thought your explanation on
>what is "normal" in your response to Andrea was eloquently stated. You
>hit it on the head! I feel bad that Andrea is so destroyed over her
>daughter's accident that she refuses to listen to the people who can
>help her the most. The pain is eating her alive and I pity her more
>than her little girl. I don't believe Mandy's life is ruined. So many
>of us were Little Mandy's. The woman hasn't a clue how offensive her
>remarks were to us and how hard we all tried to help her. I re-read
>all of the comments and considering how she implied that adults with
>SCI were responsible for their conditions, and we are all thrilled
>with our disabilities, it's amazing we were all so tactful. She made
>me feel like the Borg(any trekkies out there?) of Star Trek saying we
>were half human/half machine. I hope she takes your advice and gets
>some counseling. I also hope she gets her daughter out of that
>hospital setting. Non-disabled people just don't "get it" most of the
>time. My daughter calls herself a "half gimp." Even though she has no
>disability, she thinks like a gimp. She understands our unique humor
>and gets infuriated when people think we had her so she can take care
>of us! Tara has a deaf friend(Tara signs proficiently) at school. The
>teacher will look at Tara and LOUDLY ENUNCIATE each word to my
>daughter so she can sign back to Christina what is being said.
>Yesterday, he brought over a note to Christina written IN HUGE
>LETTERS! Christina signed to Tara "the-------must think I am blind
>too"! Tara and her friend burst into peels of laughter. We roar when
>non-disabled people scream at my husband like he's deaf. Life can be
>amusing when you have a disability as well as frustrating. Andrea made
>me search in my soul when she chided us for being so grateful for our
>disabilities. I am not grateful for my disability and I wouldn't wish
>it on anyone. I have dark nights of the soul but they are not always
>disability related. I miss my mom who died before Tara was born. My
>mom accepted my disability and loved me for whom I am. I worry about
>paying my mortgage and other bills. I honestly don't dream of being
>able-bodied. My disability is who I am. If I am cured someday--fine.
>If not, that's o.k too. Cyndi Jones,(polio survivor) editor of
>Mainstream, Carol Gill,(polio survivor and vent-user & psychologist)
>and many other people in the disability community have said even if a
>cure was available they would stay disabled. What would you do Carol?
>What do the others on this list think? Would you opt for cure or stay
>disabled? Many deaf people adamantly refuse cohlear implants because
>they truly want to be deaf. About the only thing I feel that my
>disability has cheated me out of is playing the guitar. I just can't
>teach my feet to strum the strings although I know someone who does
>play guitar with his feet. I would have liked to ride a two wheel
>bike. Stupid maybe. Rick would like to be able to "see" so he could
>drive...every blind person's fantasy. Well, I certainly have been
>verbose tonight. So, goodnight Carol & everyone else; sweet dreams!
>Val