Charles:
I forgot to answer some of your questions in my previous email.
I do not have any info on the earliest recognition of PD symptoms. It
is thought that about 10-15% of the people have early on set PD (if I
understand it right, these people progress rather rapidly in a matterof 5 -
10 years and are probaby familial), and the rest are late on set the average
age being 50-60 or more, although it appears now that it can occur at any
age. I think the problem here is a question of awareness of the symptoms
and learning to recognize the symptoms when they occur early enough.
In my case I know it is familial. My father had essential tremor as
eary as I can remember. But, he was never diagnzed to have PD, till he
passed away in India at the ripe age of 90, after having lived an active and
most successful life by any standard. But, I know he had facial mask at
least from around 40 years or so and had a little buckling of his knees as
he got older.
I know I had my tremor even when I was a teenager, and three of my foour
other brothers have action tremor (ET).
Chronologically speaking:
1. Action tremor in my right hand in my teen age (With this I
still (until three years ago) do a lot of painting, which is one
of my hobbies).
2. Mild facial mask in late 20s - early 30s - my first symptom of
PD.
3. Mild slurring of speech when I was 65.
4. Reduced (right) arm swinging around the same time.
5. At 66-67, I recognized that I have developed hypothyridism, which
I now think, is related to PD.
6. At 67, I started having action tremor in my right leg.
6. At 67-68 I experienced difficulty in getting out my car seat and
rolling over in my bed.
7. At 68-69 I started having pain in my right calf muscles early in
the morning.
8. At 69, I notice some action tremor in my left hand also, while
the action trmor in my right hand has become very violent and I cannot eat
food or write one word with my right hand. Handritingdid not get smaller
and smaler as it should for PD ptients. Simply my handwriting is one big
mess, sort of looks like the scratchings of a chicken legs when it is
looking for food!
As far as I know, you and me are the only two cases that I am aware of
that had symtomsso early, but PD did not develop all the symptoms until late
age.
I think more of us should record the chronological info on the
development and serverity of various symptoms of ET and PD just so the data
will be available for future researchers.
Raj
********************
----- Original Message -----
From: "Charles W. Scouten, Ph.D." <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, May 18, 2002 12:48 AM
Subject: Re: Introducing myself
> Our stories run so similar its scary. I am in the propranalol stage
> right now. Except the speech problem is sudden lockup of the face
> muscles so I can't talk when trying to force speech and think at the
> same time. I am a Ph.D. studying PD right now, and working on a grant,
> and just sort of dawned on me that I seem to be in the early stages,
> very much like you have described. Kind of lends an urgency to it all.
> I have had symptoms since about 18 that I would now trace to early
> traces. How common is it to have very early symptoms and warnings?
> Long before diagnosable?
>
> Cordially,
>
> Charles W. Scouten, Ph.D.
> myNeuroLab.com
> 5918 Evergreen Blvd.
> St. Louis, MO 63134
> Ph: 314 522 0300
> FAX 314 522 0277
> [log in to unmask]
> www.myneurolab.com
>
>
> -----Original Message-----
> From: Brightline [mailto:[log in to unmask]]
> Sent: Friday, May 17, 2002 6:45 PM
> To: [log in to unmask]
> Subject: Introducing myself
>
> Dear Friends:
> I am not new, but I have not been very actively involved so far,
> except
> sending a couple of comments once in a while. I am 68, running on 69. I
> am
> an officially retired, but very much active, profesor and my area of
> research was and is cancer. I have been having what everybody thought
> was
> ET (action tremor) since my teen age days. But, come to think of it, I
> had
> a slight facial mask from my twenties or thirties. I recollect in
> 1972-73,
> some of my close friends use to tell me: "You have a nice smile and a
> good
> heart. Why don't you use them to your advantage, instead of putting up
> a
> sorrow face all the time?" I am not sure if I had an early onset PD
> with
> very little true PD symptoms (no resting tremor, posturl instability,
> drooling etc.) As a hind sight, I am sure it might be true.
> In 1998 (at my 65th year), when I was lecturing in my class, I
> noticed a
> slight, occasional slurring of my speech. I did not even dream of PD in
> thse days. Then, I started noticing my right arm did not swing as good
> as
> my left. My action tremor in my right hand became very highly visible
> and I
> began to notice by 2000 my right leg was doing the same in synch with my
> right leg, when I did smething with my right hand fingers. Buttoning my
> shirts takes a lot more time. By the end of 2001, I could not reproduce
> my
> signature; however my handwriting did not become tinies andtiniesas it
> should be for PD; simplyh I cannot right one word without my hand
> running
> crazy all over the place. I was lucky I knew typing. Even that becomes
> very difficult now days, since a couple of my fingers would not want to
> bend
> when I type some letters!
> By the year 2000, I was convinced some thing strange was going on
> There
> fore I saw a neurologist. She told me I ws having ET and not PD. Then
> I
> went and saw the only local Movement Disorder Specialist who thought tht
> I
> was developing PD on top of my ET. I went through the initial phase of
> denial and sought a second opinion from another MDS at Bethesda
> Univesity
> Hospital. She assured me that I did not have PD and prescribed
> Propranalol.
> When my lo al MDS heard this, he refused to see me! Propranalol had
> only
> transient effect on my tremor; soon I started developing high blood
> pressure
> (this is a beta blocker and is not supposed to do this!), increase in
> weight
> and blood sugar, and lethargy and low pulse rate. I stopped taking
> Propranalol; I lost my gained weight, blood sugar became normal, normal
> pulse rate, and my action tremor was getting worse. I have developed
> mild
> postural instability and occasinal drooling, along with sightly
> progressed
> speech slurring.
> I saw another neurologist who prescribed sinemet CR, which I have
> not
> yet started taking. In the meanwhile, the news about mirapex and requip
> delaying the progression of PD. I am wondering if I should see another
> MDS.
> I am waiting to get an appointment with Dr. Tony Lang in Toronto.
> More about me later.
> Raj
> [log in to unmask]
>
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