Elaine, where do you live and how old is your husband?
--------
God bless
Mary Ann (CG Jamie 68/28 with PD, died 22/30/07)
www.bentwillowfarm.org

> This is very interesting information about your daughter.  Thanks for
> sharing.  I am new to this group.  My husband has had Parkinson's disease
> for about ten years.  He has had 4 neurologists during this time.  One
> took him off sinemet cold turkey in '05.  My husband would freeze, not
> being able to stand or roll over in bed and when he could walk, his
> balance was atrocious.  We went back to the neurologist who decided to
> wean Dick off slower, cutting the dose each week until he was finished.
> We went on vacation across the country for two weeks.  When he finished
> the decline in medicine, the same thing happened to him, so the
> neurologist said he didn't have Parkinson's, but he didn't know what was
> wrong.  I said you can't give him news like this without a referral to
> another expert, so he arranged to send him to the Barrow Institute in
> Phoenix.  That expert said he had PD and also beginning dementia.  Then in
> spring of this year, Dick went to a new neurologist (the other
> three had left the practice by this time.)
> That visit happened because we wanted to acquaint the new neurologist with
> Dick's medical history. The neurologist suggested we see a different
> neurologist expert in Parkinson's.  She  keeps a small practice, so he
> could not be seen until July 31st.  His problems escalated.  He began to
> fall and spin like a helicopter, then he could not eat without  making a
> big mess and looking very drunk.  He fell a couple more times and then
> really lost it.  He was hospitalized  after the EMT found his oxygen SAT
> was in the low 70's.  He  was more and more disoriented. and came home and
> became violent.  It seems he had a urinary infection , not to mention that
> the took him off all his meds.  He was hospitalized a couple more times.
> Even though I asked every day for a neurologist to see him in his present
> condition, the hospital denied the request even though they had no
> neurologists in the hospital. His urinary infection was treated and he had
> no more violence after a two week stay in
> a behavioral program.  He was still very sick, however,.  He went to  see
> the expert who agreed that he had Parkinson's and probably Lewy Body
> Disease.  She put him on a lot of vitamins in addition to medicine.  I do
> not have my husband back.  I live with a nice man, my husband, who
> declined so fast that he hallucinates, can't talk so one can understand
> him sometimes, tends to fall, and has severe learning disability, among
> other things.  He has night and day sweats that I have read are dangerous,
> but the doctors poo, poo!  My body is going fast from lifting him several
> times a day and my mind often is worse than his.  It is very sad.  We also
> worry about losing everything we have saved to take care of us in our old
> age so that we won't be dependent on our children.  Everyone in the family
> is hit by the side effects of whatever happened to him this past spring
> and summer.  He is now on three half pills of sinemet per day and lots of
> other medications.  Life is a roller
> coaster of hope and despair. He is going to a nice psychiatrist who is
> trying to balance Dick's med so that he can have a semblance  of a normal
> life.  I'm waiting for the other shoe to drop.
> Elaine
>
> angela hamon <[log in to unmask]> wrote: Hello All,
> Margey, my daughter,  had her social security exams yesterday. They
> diagnosed her with stage 3 parkinsons. She had some tests for the
> dementia, and an eye test for wilson's, and they reviewed the negative
> blood tests for other diseases. they also went over family history of
> parkinsons (my grandma).
>
> The Dr who took her off Sinemet has been formally reported for negligence.
> She received a sample of medication, because she had a seizure during
> exam, and today she is walking without assistance. I was not in the office
> with her,  but she tells me the Dr noted speech difficulties and said she
> could expect her award letter in a few weeks .
>
> I had already taken her back to the referring clinic and now, with her
> social security diagnosis in hand, they can rest assured that their
> treatment plan was a good one. All the trouble had only started when they
> referred her to a neurologist, wanting to make sure that their treatment
> was right.
>
>
> Thank you all again for your help with advice on medical records, dealing
> with Drs referrals, and so forth. You guys really gave great advice!
>
>
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