Friday greetings.

I have been considering writing this for a while, but Don's email with
his welcome history convinced me it's not too mundane to ask.

I was diagnosed six months ago after sensing symptoms for at least five
years.  I have put off taking any medications except Inderal  (10 mg
x3/day) and vitamin E because of the side effects - especially the
falling asleep and nausea.   The tremors I can deal with and I have
learned how to alter how I walk and stand to deal with a mild and
occasional balance issue.   What is a problem is feeling like I am
literally carrying the weight of the world around........it is an effort
to even sit still or lift my arms in the morning though all symptoms
seem to almost disappear later in the day.

My questions are:  do these wonderful/awful medications help with this
feeling of immobility?  Are the side effects worth the changes?   It's
not a freezing of motion - just enormous effort to do anything though a
short (15 minute) rest period is very restorative.    What would happen
if one never  took  medications for  PD?

There is a wonderful PD clinic not far from me but our insurance doesn't
include them.  I will eventually go down for the work-up and treatments
paying for it myself and routing the medications through my willing GP
so that insurance will cover those.    I suppose I am still in some
level of denial, but I hate taking medications and having one's life
revolve around "pill time".

Any thoughts out there?   Thanks to all of you for taking the time to
help us new folk out.
Margery



Don Adams wrote:

> Hello folks:
>        No, don't look for another limerick! I am strictly abiding by
> the rules
> that I assumed were in place when I joined the list.
>        I am very gratified to see the numerous responses to Mr.
> McCarthy's
> request re Repuip. I remember asking for the same a few weeks ago and got
> little response, and I really do believe it was before I roiled the PIEN
> waters with my objection to politically  motivated statements
> appearing on
> the list.
>
>         I was first diagnosed with Essential Tremor in January, 1998.
> A drug was
> prescribed which had no effect on the slight tremor in my left
> hand/arm. My
> doctor, an Internal Medicine man, had told me he saw no sign of PD when I
> asked about it. I then decided that since I was having trouble with my
> neck
> (result of auto accident several years prior) I would try a chiropractor.
> She told me up front that she couldn't help the tremor, but could help my
> neck. She really did, but the tremor remained. The severity of the tremor
> seemed to stabilize, still being intermittent. In the fall of 1998,
> however, a tremor began to develop in my left leg. When I told my elder
> daughter that (she is an RN, lives in Texas) she insisted I see a
> neurologist. So I had my IM guy refer me to a neurologist in the same
> large
> clinic. The neurologist immediately diagnosed PD after having me walk
> across the room. He told me I was in the very early stage of PD. I asked
> what he could do for my tremor, and he said just take Benedryl every
> night.
> I had done some reading on the subject and knew there were some new
> drugs.
> I was also in the first stage of denial and just slightly bellicose about
> it. I asked if there wasn't something better he could prescribe. The Dr
> seemed to get slightly irritated at that, perhaps at my demeanor, and
> said
> ok, and wrote a prescription for Eldepryl. When I got home I did some
> internet research and saw that the manufacturer of Eldepryl stated in
> several places that the drug had not been shown to be effective except as
> an "adjunct to Sinemet". I never filled the prescription and when I went
> back to the clinic for an MRI (which was negative) I brought the
> manufacturer's document with me and confronted the Dr. He was taken
> aback,
> and after reading the document, sort of hemmed and hawed and mumbled
> something about trials on primates. He then wrote a prescription for
> Requip, as I had brought mfrs statements on Requip and Mirapex. As I left
> the office I was stricken by a strong lack of confidence in this
> neurologist and related this story to my IM doctor. He made an
> appointment
> for me with a neurologist at Ochsner's Clinic in New Orleans. The only
> problem was a 2 month wait.  In July, 1998  the neurologist at Ochsner's
> examined me and confirmed the PD diagnosis. He prescribed Requip and gave
> me the starter kit which gradually increased the dosage from .25 mg x
> 3, to
> 1 mg x 3 over a four  week period.
>        The first month on Requip I had stomach pain, dizziness,  and
> "heartburn".  The neurologist told me to gradually increase the
> dosages and
> to see him again in 3 months. This routine has been followed to the
> present
> time. I  have peaked at a dosage of 5 mg x3 for a total of 15 mg per
> day. I
> understand the maximum dosage is 24 mg/ day! As most of you are aware,
> Requip is quite expensive. I also take a muscle relaxer, chlorabenzaprine
> which seems to work well with the Requip.
>        I also have had most of the side effects that others have
> written about
> like blurred vision, no hallucinations but a sense of movement out of the
> corner of my eye. They all have been intermittent.  Only one has been
> constant and that began last March. It is "xerostomia", or dry mouth,
> which
> is   much worse than it sounds. It took many months, and various
> specialists to determine that the "xerostomia" was a side effect of the
> Requip. I have now begun a program to decrease the Requip dosages in an
> effort to end the dry mouth syndrome. It was a relief to find it was, I
> hope, xerostomia and not what one Dr thought it might be : Sjogren's
> Syndrome, or perhaps lupus, since a sub-cutaneous rash is present over
> most
> of my body. The only other worrisome side effect of the Requip has been a
> few episodes of sleep attack, always while I am inactive or sitting at my
> computer. The one incident which alarmed me occurred while waiting for a
> long red traffic light when I dozed off, but immediately woke up
> before the
> green came on. Since then I have had no problem driving.
>         I hope this "epistle" was not too boring. I thought that since
> so many
> members have written about their Requip experience it would be apropos to
> report that I had been taking a much heavier dosage for a period of 3
> years
> and have had good results re PD symptoms. Requip is the only PD drug
> taken,
> although the muscle relaxer has shown me that it is beneficial, though my
> neurologist doesn't understand why. He believes me however. All this
> seems
> to prove that every individual reacts differently to medication, and
> it is
> the better physician who listens to what his patient has to say.
>        I had better mention that one PD symptom that hardly ever seems
> to improve
> after medication is a slight balance problem that I become aware of when
> walking over rough or uneven surfaces.
>        If anyone would care to compare experiences further,  write to
> me off
> list, please.
>                                Regards
>                                        Don A
>
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