Mike:
The reason the Drs have you walk up & down the hall is simply to see
if your arms swing back & forth, as you walk. If they don't swing,
you're likely a Parky.

Have a gudun,

Toad


--- In plwp2@yahoogroups.com, "michael johnston" <tennmike1957@...>
wrote:
>
> Margaret, a little story for you ! It is an exert from my story !
> Hope you enjoy !
>
> You have got to be kidding ! Pt. 2
>
> After my first diagnosis of Parkinson's Disease , I searched for
the
> answer  to " Why me?"   So I dug into this internet thing !
> Searching for the answer ! I found a site that was called PLWP ! It
> was supposed to be a Parkinson's support chat room !  PLWP ? What
did
> that mean ? After arriving on this site , It said this was for
people
> living with Parkinson's ! PLWP !  Living ? Hum ! Must not be a
death
> sentence ! There I found people , so supportive and full of life ,
> living with this disease that I knew nothing of !  I finally got
help
> getting set up for chat ! There was this special lady there when i
> arrived , at 3 am , what was she doing here? She talked with me and
> introduce me to others as they came in ! I could never explain how
> this truly impacted my life !  It probably saved me from myself ,
as
> I was on the edge ! As I sat and listened and read the text ,
> quietly , I became a member of this very supportive group !
>
> Then came my second opinion ! I searched for a neuroligist that
> specialized in Parkinson's Disease and something called "movement
> disorders" ! I was told there was a  group in my home state of
> Tennessee , in Nashville , that was very interested in Parkinson's
> Disease ! Especially this thing called " young onset Parkinsons
> Disease ".  So I went there ! They had me tap my foot , tap my
> fingers , touch my nose  then his finger and of course ... walk
down
> the hall and back . As I passed the Doctor and his research
> assitatant in the door way , he said " Son , you have
Parkinsons " .
> What was it with this walk down the hall ? Why was that always the
> tell tell sign ? We talked , they questioned all my life history
> concerning exposures .
>
> I was invited to a reunion of their patients . Wow ! What an eye
> opening experience !  I was by no means ready for this ! There was
a
> buffet set up in the lobby !  People shaking , stammering to get
> words out , freezing in their tracks , dropping things , spilling
> things , arms jerking , heads jerking ! Boy ! are the caterers
really
> going to love us ! Only a trip to the Men's room , brought some
sense
> of humor to this ! As I stood at the urinal beside other Parkies ,
it
> dawned on me , " Boy this gives new meaning to shakin' it !"  It
was
> mind opening !
>
> So, back to the chat room .  Searching for more answers , I
> determined that I would wait till I could no longer deal with the
> tremor before I subsided to medication .  I searched the area for a
> local support group . Thank GOD I found this bunch !  All
> extraordinary in there own right .  Teachers , chemists ,
ministers ,
> vetereans , but all in their own way very talented
> and....essentric .  Not in a bad way  , but with an outlook on life
> like I have !  Doomed by this disease? ... not this bunch ! Full of
> life , very supportive and caring !  Again , just in the nick of
> time ! Again I was on the edge , but again found what I needed !
>
> This was about the time when my wife said  to me out of the
blue .."
> I have no intention of wiping your butt the rest of my life ! I
need
> someone who can financially care for me and MY daughter ! I want a
> divorce !"  This was a tramatic experience as she is the vindictive
> type ! My progression began to quicken until I got hold of my
> emotions !
>
> Then , my first Parkinson's seminar ! A group Doctors , telling
> about  symptoms , treatments  and generally talking above my
head .
> Then , at the microphone, a lady , shaking like me ! She talked of
> her trials with Parkinson's Disease .  Then all of a sudden she
> looked up toward the ceiling and said " WHY ME?"  Then she looked
> down and paused .... and answered herself ... " WHY NOT ME !"
You
> have got to be kidding !  She had the answer to my question ! Why
not
> me !
>
> Your Friend in PD !
>
> Michael
>
> --- In plwp2@yahoogroups.com, "psalm40_1_2" <ancala1@> wrote:
> >
> > Margaret, you have been through a lot....BUT, you have such a
great
> > attitude.  I know exactly what you mean when you sometimes
say "why
> > me"....we all do that.  But, it is vital to take each day as a
gift
> > & make the most of it.  It really does help to look for the
> > positives.  In my life, it is my faith in God & my awesome family
> > that gives me strength & hope and love!!
> > God bless you with a joyful spirit to embrace each day.
> >
> >
> > --- In plwp2@yahoogroups.com, "Margaret Swope" <merogers1@> wrote:
> > >
> > > I am a 57 yrs. old female and in Oct. 2004 had a minor stroke,
3
> > days
> > > later verified that I have parkinsons, the very next day had
> > another
> > > stroke leaving me paralized on my left side. Through a lot of
> > prayers
> > > and a year of physical therapy, I was blessed by having
> everything
> > back
> > > to normal, except for the parkinsons. I can finish my life out
by
> > > saying, "Why me" and being bitter or looking at the bright side
> > and
> > > saying " Why not me". Please don't get me wrong, I have my
pitty
> > me
> > > moments, I am only human, but it is a waste of time and
energy.
> I
> > am
> > > so thankful for my family, friends, and my cocker spaniel named
> > Boomer.
> > > My PD has increase these past few months, but I am fortunate to
> > live in
> > > Florida and to be able to go outside.
> > > I am also grateful for finding this group and meeting new
friends.
> > > Thank you.
> > >
> >
>

download and let everyone else follow in our steps.

http://www.skype.com/download/skype/windows/downloading_beta.html


And getting off the subject, I married into a new town some eight years
ago.  I would often ride my bicycle in my now new neighborhood.
I would often get lost so I came up with the great idea of getting a
stationary bicycle, which I did.  after using the stationary bicycle
for six months I am proud to say I have not gotten lost but three
times. So point being, if you have a tendency of getting lost, by all
means get you a station bicycle. And one last thing you may want to do
as I do, every time I go ridding on my stationer bicycle I tie a  rope
around my waist and the other end to a door knob. that is a must do, I
have not gotten lost yet after using the rope

Dianna aka Dynamo,

You really are a dynamo! You so impressed me with your weekend of
firsts. I could not believe your determination and energy. You are
and inspiration to all of us. To show us never to give up and
continue to keep on trying in all endeavors. You accomplished all
you set out to do. I respect you and I am so proud of you. Your hugs
energized me and all of the other PLWP  team members.  You are such
an assest to the PLWP organization and I am grateful to call you
friend.

Love you Much,

Together We Make a Difference

Nan


--- In plwp2@yahoogroups.com, "Dianna" <dianna6862@...> wrote:
>
> The last three days have been the most rewarding and and exciting
of my
> life.  It was a weekend of firsts for me.  First airplane trip.
First
> airline cancellation,  first time in New York,  first time I rode
in a
> taxi, first time I rode the subway.
>
> It was also the first time I saw Michael J Fox in person ,  first
time
> I saw May May and Lonnie Ali. Its the first time I have attended
the
> Unity Walk and the first time for me to COMPLETE the 2 mile walk.
>
> I am honored to have been able to attend this very important fund
> raising event!!
>
> It is also the first time I was able to meet some of the most
important
> people to me,  My fellow PLWP.  The best people in the world have
PD!
>
> Thanks
> Dianna
>
> p.s.  It is also the first time I have had to share one bathroom
with
> 7 other women. LOL
>

Kelly, here is more info for you:

We have an Information & Referral center in Phoenix at the Banner
Good Samaritan Medical Center.  Tom Viviano is the coordinator
there.  The phone number there is (602) 239-3542.  He can help you
with the support groups and mail you some information as well.



Pam Valenzuela



--- In plwp2@yahoogroups.com, Kelly <kgezzer1312@...> wrote:
>
> How I envy you all in the East where the states are small and all
> crowded together, so only less than 3 hours can bring everyone
together
> for lunch or walks in the park, or.....
>
> Living in CA for 25 years means one car per person, we seldom walked
> anywhere.
>
> Now in AZ, and living downtown sounds great for walking, but now I
> cannot walk even 10 ft without just sitting down .
>
> Still drive auto but that even getting iffy and when that goes,
thank
> you for Hove-Around, even tho do not need yet.
>
> Now here's my point, how do I find a Parkinson's group that meets in
> the day. (can't drive at nite because have large pupils) There is a
> night group.  Would start one but apartment small.  Wonder if there
is
> a YMCA or even a Rec Center here. Phoenix is the oddest city have
ever
> lived in, a bit of old and new squished together.  Know I am
missing so
> much but too tired to explore. Am disabled and have a disabled
plate on
> car, but can not get certified  as  disabled  as income just over
> allowed amount.   (Whine, whine)
>
> Know there is at least one member who is or was from Phoenix. Point
me
> in a direction and I'll use Map Quest to get there.
>
> Thanks in advance
>
> Okey, done whining, now have to get on the stick.....
>

----- Original Message -----

From: Kelly

To: plwp2@yahoogroups.com

Sent: Monday, April 30, 2007 5:49 PM

Subject: [PLWP2] Re:PLWP and Unity Walk

How I envy you all in the East where the states are small and all
crowded together, so only less than 3 hours can bring everyone together
for lunch or walks in the park, or.....

Living in CA for 25 years means one car per person, we seldom walked
anywhere.

Now in AZ, and living downtown sounds great for walking, but now I
cannot walk even 10 ft without just sitting down .

Still drive auto but that even getting iffy and when that goes, thank
you for Hove-Around, even tho do not need yet.

Now here's my point, how do I find a Parkinson's group that meets in
the day. (can't drive at nite because have large pupils) There is a
night group. Would start one but apartment small. Wonder if there is
a YMCA or even a Rec Center here. Phoenix is the oddest city have ever
lived in, a bit of old and new squished together. Know I am missing so
much but too tired to explore. Am disabled and have a disabled plate on
car, but can not get certified as disabled as income just over
allowed amount. (Whine, whine)

Know there is at least one member who is or was from Phoenix. Point me
in a direction and I'll use Map Quest to get there.

Thanks in advance

Okey, done whining, now have to get on the stick.....

How I envy you all in the East where the states are small and all
crowded together, so only less than 3 hours can bring everyone together
for lunch or walks in the park, or.....

Living in CA for 25 years means one car per person, we seldom walked
anywhere.

Now in AZ, and living downtown sounds great for walking, but now I
cannot walk even 10 ft without just sitting down .

Still drive auto but that even getting iffy and when that goes, thank
you for Hove-Around, even tho do not need yet.

Now here's my point, how do I find a Parkinson's group that meets in
the day. (can't drive at nite because have large pupils) There is a
night group.  Would start one but apartment small.  Wonder if there is
a YMCA or even a Rec Center here. Phoenix is the oddest city have ever
lived in, a bit of old and new squished together.  Know I am missing so
much but too tired to explore. Am disabled and have a disabled plate on
car, but can not get certified  as  disabled  as income just over
allowed amount.   (Whine, whine)

Know there is at least one member who is or was from Phoenix. Point me
in a direction and I'll use Map Quest to get there.

Thanks in advance

Okey, done whining, now have to get on the stick.....

I know the story of bumping, bruises and falling. Memory loss and all
the fun stuff that comes with PD. You are not alone and we do
understand your frustration. I once had almost perfect recall now I
have post it notes all over my house. I took a bad fall right before
leaving for NY, took some skin off the arm and knees and gained some
new bruises to add to the old ones. Shawn you are dealing with what
Parkinson's has handed you; memory loss is part of the game. Fear not
you are not loosing your mind. Your old memories will most likely stay
in tact. Short term memory loss is what most of us fight with but you
will find ways of coping with this. I am so glad you shared with us
your concerns. This is a scary path for all of us, the unknown is
always met with concern and fear. Live each day to it's fullest, enjoy
your friends and family and pray for a cure soon. You are loved and we
are here for you.

Jenny

Paul Shroder will be having the first part of his new DBS done May
11, after many disappointing delays. This one will also be filmed
and I encourage each one of you to have your neurologists and
movement disorder specialists to have this in their offices. It is a
very valuable learning tool. Paul, hang in there only a few days
left. I had a great visit with Paul and his parents last night. They
have very positive attitudes and are such nice folks. They are very,
very supportive of Paul and the rest of us. Please keep paul in your
prayers, thoughts and good wishes.

Jim Evenridge, you my friend besides being a wealth of information
are such an inspiration to me. No matter how tough things get you
always seem to find something positive to say. You are indeed one of
my heros. I appreciate your candor with us and agree that is just
how it should be.

I am sure we have many members that still need our support, prayers
and good wishes. I know I can count of all of you to seek out these
members and make sure to give them positive messages and hope. After
all hope is what we all need to have to fight this disease. I have
great hope for a cure in our life time.

To all of you be well, be kind to yourselves and others and know
that each and everyone of you are loved and appreciated very much.

Jenny

Together we make a difference!

I am glad to get to sit down and let you all know how the Unity Walk
went. It was without a doubt one of the highlights of my life. First
I have to say we met our goal for fundraising for the Unity Walk.
Thank you to each and everyone of you that donated to this walk.
PLWP is still working on reaching it's goal. To those of you that
were able to donate or plan to donate thank you so much. As all of
you know PLWP is a non profit organization and we depend on
donations to keep this company going. You guys are the most awesome
people I have ever known.

I have been staying at Nan's this trip but I have the long treck
home to Washington State tomorrow morning. I am not looking forward
to that but it is worth it to be a part of the unity walk. I had the
most awesome time. Nan introduced me to Michael J. Fox and he signed
my shirt. We didn't get a lot of time to chat but I can tell you he
is a genuinely nice man. His willingness to give of his time is
amazing considering he has people tugging on him all the time for
his time and attention. Another hilight for me was go get to meet
MaeMae Ali. She and I did talk for a long while and she is a
wonderful woman. She had her picture taken with me and was excited
to hear how much my older son with Down's thinks her dad is so cool.
I got to see many old friends that I have not seen since the
Savannah event. I got to meet some new people that I have spoken
often with on the net but finally got to meat in person. William
Kennedy thank you my friend you were indeed one of the main hilights
of my trip and getting to meet you in person was such a thrill.
William's son joined us, (he lives in NY). He was a wonderful source
of information and a great NY guide. He is a very nice young man;
William and your wife you must be so very proud of your son. The
weather was beautiful and I made my personal goal to walk the whole
walk. Thanks to Tom Abraham; (Nan's husband) made sure we all made
it. This man is the salt of the earth. He is such a great sport and
was so helpful to us all. If it wasn't for Nan and Tom I would not
have been able to do this trip. I got to see my sister in PD Karen
Mankey, had a great time with Gary Boyd and enjoyed Steve's tech.
help. Lindy is a fireball and Diane is a sweet lady. Jane Martha is
such a sweet little lady. Lori and her folks also joined us, what a
very special family. I know there are a lot of folks on our team I
have not mentioned but each one of you are my hero's. It will be so
difficult saying good bye to Nan and Tom. Nan is a wonderful cook
and has a very good sense of humor. When you are in their home you
are made to feel like family.

I realise this is a lengthy post but it was such a great and
positive experience and I want all of you to enjoy it vicariously.
We have lots of pictures to share, just give us some time to get
them posted for you all. I missed all of you and your IM's so much.
I never realised how much all of you are a part of me until I was
not able to communicate with you for a while.

As long as we have great people like all of you and are willing to
try WE WILL FIND A CURE!

In closing I wish to thank everyone that came to the walk I know
what a difficult trip it can be when you are trying to travle with
PD. I would like to thank everyone that were not able to come for
your support. You were all in my heart at the walk.

Jenny

Together We Make A Difference.

The last three days have been the most rewarding and and exciting of my
life.  It was a weekend of firsts for me.  First airplane trip. First
airline cancellation,  first time in New York,  first time I rode in a
taxi, first time I rode the subway.

It was also the first time I saw Michael J Fox in person ,  first time
I saw May May and Lonnie Ali. Its the first time I have attended the
Unity Walk and the first time for me to COMPLETE the 2 mile walk.

I am honored to have been able to attend this very important fund
raising event!!

It is also the first time I was able to meet some of the most important
people to me,  My fellow PLWP.  The best people in the world have PD!

Thanks
Dianna

p.s.  It is also the first time I have had to share one bathroom with
7 other women. LOL

On Friday night, a group of PLWP members got to know each other a
little better at a "get to know you Pizza Party". On Saturday, the
PLWP team attended the 13th Annual Parkinson's Unity Walk in Central
Park in NYC.  PLWP has been attending this event since 1999 with a
variety of our members.  We have always been proud of are
participation.

MJ Fox, Lonnie Ali, May May Ali, Ann Udall, Amy Comstack (PAN)  were
just some of the speakers. It was a beautiful day, and the
attendance was recorded as 11,200. Lonnie Ali gave an emotional
speech talking about her husband. She talked about the struggles he
has experienced after being dxed with PD 20 years ago. She gave a
heartfelt and tearful speech about the difficulties her husband has
been through. She credited MJF with inspiring him and motivating him
to keep on trying and not to give up.    I don't think there were
too many dry eyes in the place including MJF.

All the organizers did a spectacular job!!!  I am very proud of the
turnout out of everyone including our PLWP members. So far PLWP has
raised over $6,500.00 for this worthy event and more money is coming
in. To find out our members and donations go to
http://www.unitywalk.org/ I cannot thank the PLWP Team enough for
their participation taking in to consideration their physical
limitations and financial costs.  They all made the effort and these
are a fantastic group of people! I want to thank all of you for your
support as well.


Together We Make A Difference,

Warmest Regards,

Nan

-------------- Original message --------------
From: "psalm40_1_2" <ancala1@...>

For those of you who don't know about Joni:
http://www.joniandfriends.org/about_joni.php

We all have our "trials" in life. With PD....I have done the "why me"
quite a lot! Then I also think...."why not me"?
Joni has lived in her wheelchair for 4 decades now & her message of
HOPE to those who feel hopeless is a true inspiration.

She spoke last night at our church & shared many stories...stories of
desperate people. Some quadraplegic, some with cancer, MS, PD, etc.,
etc. Bottom line, she shared her wonderful faith & hope in God & used
a line frome the movie Shawshanke Redemption. "Without hope, we have
nothing...you can either get busy living or get busy dying".

I choose to get busy... not just living.....but living each day as a
gift...first, to receive & then share & give back to others.

Wishing you all a great day....f illed with HOPE!

-------------- Original message --------------
From: Debb F <debbwith2bs@...>

I'm sad to hear of your set back. I feel like a "poser" sometimes; my symptoms are so light. But I know there are trials ahead. When you share yours with us it makes them not quiet scary.

 

Your are quality, my friend.....debb 

 

 

"Jim Evridge AKA:Silverfoxx" <silfoxx2002@yahoo.com> wrote:

Hi All,

 

For four years now all of you have been reading of the glorious and miraculous experiences since my lone Soletra has been turned on.   All of that has dramatically changed, as of my last reprogramming session, yesterday, and  have not yet fully recovered from. 

 

Don't get me wrong,  I am still getting bilateral results from my unilateral implant,  it's just that it can't do any more for me than what it is now doing for me!  I will try to describe yesterdays session as explicitly as possible, while still "fresh" in my mind.  This will be rather candid,  as it should be.  There is no need, or reason to "hide" anything.  A little caveat:  I have advanced Parkinson Disease.  I am now "classified" (God, I hate that word!) as being in Stage Four PD (Hoehn & Yahr Scale).  What that means is "Symptoms on both sides of the body. Moderate difficulty walking."  (and that's with my Soletra turned on!) 

Without my stim turned on, I am very close to Stage Five PD: Symptoms on both sides of the body. Unable to walk, especially when my stim is off.

 

Simple explanations of my present PD status, but to all of us with PD, we all know that there is much more to the debilitating aspects of PD than just those "simple" explanations!

 

Plus, I was asked to be totally unmedicated for at least 24 hours prior to my appointment!

 

Anyway, here is what occurred yesterday:

 

Initial scanning with the telemetry unit found that all of the settings obtained last August were still in effect.  Even the "stored power" remaining in the Soletra battery was unchanged, 3.71 volts.  My output power was still "going strong" at 4.5v.  However,  I was experiencing almost constant "break through" tremors on my entire left side, with very limited/occasional tremor "break throughs" on my right side.  All recognized by the tech and my neurosurgeon.  The procedure began with one tenth of a volt power increases increases.  To reduce the tremoring in my left side I was taken up to 5.2 v output  to my brain.  Then the "not so nice" things began occurring.  I was losing my ability to speak coherently, my vision was being greatly compromised, and, my walking abilities were affected.  In short,  it was as if I had been drinking all night and was totally inebriated!. 

 

Every aspect of brain stimulator programming "technique" was being used.  Amplitude, pulse width, changing contact points, mono to bi polar changes.  Nothing was working!  As actual fear and associated stress began overtaking me there was a dramatic escalation of the PD symptoms in both sides of my body!  One important fact you should all keep in mind, as I had to force myself to do:  it wasn't the programming, per se, causing the problems.  It was me, allowing my fears to "invade my conscious thoughts", thus, raising my own stress levels that caused the dramatic increase in my PD symptoms.

 

I requested that my settings be "put back" to where they were when I arrived.  I then "took a coffee break" while the doc and tech "compared notes" about what had happened.

 

Since all of us DBS patients are an integral part of any programming sessions, the "bottom line" is, and always shall be, what we expect from our stimulators.  I wanted as much symptom relief as possible.  The same expectations we all desire.  So, I went back into the exam room with the clear thought of being in control, while still allowing the doc to think he was in control.  My request of just a voltage increase was "honored".

 

Slowly the voltage was taken up in one tenth of a volt increase.  Once again, problematic.  However,  we "settled" on a voltage of 4.7 volts to my brain.  There are still a few intermittent "break through" tremors in my left forearm, but that is the "trade-off" I have to expect for now.  What does my DBS future hold for me?

 

As soon as I make the appointment with my Temple Univ MDS, the evaluation process will begin for my 2nd DBS/STN along with the implantation of the Kinetra Stimulator.  One major difference between this DBS and my first one four years ago,  my next DBS will be frameless!

 

In short,  I was hoping, against hope,  that my "miracle" with the one implant would hold true forever.  Alas,  it didn't. 

 

I'm a little "down" today, mentally,  but have no fear ..... my fighting spirit against ole man parkie has not waned one iota!  So,  instead of being half bionic,  I'll be 100% bionic ...... with bright blue "glow in the dark" eyes to match Rogers' "glow in the dark"  green ones.

 

Jim Evridge   "AKA:SILVERFOXX_FIGHTING_BACK"

Pennsville, NJ

 

 

PS:  I will be offline for several days,  My wife and I are going to our vacation place to allow me to recuperate.  I will be back next Tuesday or Wed.

 

 

"We are so unlike one another.  As different as the sun, the moon, and all of the stars in the night sky. Yet, through this illness we share, We are as one!"  Jim Evridge "AKA: SILVERFOXX_FIGHTING_BACK"   

 

"Be the change you want to see in the world."   Gandhi

 

 

 

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

 

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

-------------- Original message --------------
From: chriss mills <achrissmills@...>

Dear Madelyn, Thanks so much for your reply. Yes  he is seeing an excellant neuro in our hometown. I guess just starting this road is very hard and allot of questions and praying for the right answers,one of the hardest is just hoping they will be answered and he will respond to the meds. We have just had a tremendous amount on our plates this last few months in Dec. our 14yr old was fine one day and the next we found out she not only was having intercranial seizures but had a brain tumor in her central nervous system but thank God she is responding to treatment  and at this time is not facing surgery. Then my husband got much worse and at first they thoight it was cardiac run all kinds of tests and found he has 4 disc in his neck that are ruptured and one pressing on his spinal cord and they want to operate but because of the shaking and tremors we were sent to a neurologist and found out for sure it was PD so we don't know if they will be able to operate or not? So t hank you for writing back just needed to vent to someone because of his job we can't tell but some family a very close friends so it helps to have someone to talk to.God Bless and please keep us in your prayers,Chriss

mauderegan <mmlevy46@hotmail.com> wrote:

so sorry to hear of your husband's difficulties. i know how shell
shocked you must both be right now. please know many of us have been
in the place you are inhabiting right now--and we have all come
through it. there are many therapies to help your husband. I hope he
is seeing a "movement disorder specialist" --neurologist specializing
in movement disorders --ie parkinson's, huntington's,etc.
madelyn

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

 

 

 

,-------------- Original message --------------
From: "Marcia" <countrymamma2002@...>

I know this sounds a little cliche, but just keep hanging in there, I
know that I have been where you are now, but I am in an area where
you are very limited on the Drs. I have found there just isnt much of
a choice and there isnt really very many people in this area that I
am aware of that have PD. Right now I am going through a bunch of
crap and in the process of looking for a new Nuero, and since I have
public assistance card no one it seems want to see me, most of the
time I just want to curl up and die in some remote corner, its either
this disease or the way I get treated by the medical society, it just
makes a person not want to live. So like I said, just keep hanging in
there and doing your own research, thats the thread that I am hanging
on to. Good luck and I wish you the best
Marcia-

-- In plwp2@yahoogroups.com, Kelly <kgezzer1312@...> wrote:
>
gt; Have had no signs of compulsive behavior. What I do have tho is
depression since have been taking Mirapex for 10 months. (started in
June 2006)
>
> Sometime I just feel down but some days I don't want to get up
and am prone to tearing up at the least moment. Am in process of
changing Neurologist but could not get an apointment until June 27th
at the Barrow Neurological Institute here in Phoenix.
>
> I take no meds for it nor do I want to. I know I can beat this if
I had .... what? If there was something I could do, physical
exercise, meditation, etc? I want to stop taking Mirapex which I feel
is the root of this problem. Current urologist not motion disorder
one. He did give me tests hen no one else did, but have the feeling
he has reached the end of his Parkinson knowledge.
>
> Moved to Phoenix to get apointment at Barrow. Been here since
November 2006 and have yet to make a good friend. I hav e this one
terrible fault, i am opinated. have tried to squelch it but it just
pops out, so have not interacted much with people, so not to offend.
>
> When I am losing interest in going on computer, when I used to be
a computer junky, then I know I have reached low plateau. Usually
can just laugh and bounce back up, but this time I am down too long.
Joined another group recently and don't think I fit in. They all seem
so happy and together. What to do.....
>
> Kelly
>

Does Michael move like that because of taking heavy doses of sinemet or
is that actually a symptom of pd that I have to look forward to? I have
seen several people with pd including myself and they do not have such
pronounced dyskinesia.

I have been told he hypes it up a bit too get the attention of this
wonderful disease we have. So many unknowledgeable people think we
faking it in the beginning because our symptoms are not so obvious. For
example my room mate says just do it. When I say I can't dance anymore
because the body won't cooperate he thinks I am full of ----. To him
Parkinson's is only a word. He doesn't know how we struggle to move in
bed, brush our teeth and stand in one place for any length of time. He
doesn't know that sometimes it hurts to hold the phone to your ear.
What it is like at the grocery store to check out. He doesn't know we
grow weak and have trouble lifting things. He doesn't know that throw
rugs all over the house cause us to stumble.. Sometimes it is so
frustrating. We don't need insult to add to ingury.

Sorry I am having a bad PD week.

-------------- Original message --------------
From: Kelly <kgezzer1312@...>

Have had no signs of compulsive behavior. What I do have tho is depression since have been taking Mirapex for  10 months. (started in June 2006)

 

Sometime I just feel down but some days I don't want to get up and am prone to tearing up at the least moment.  Am in process of changing Neurologist but could not get an apointment until June 27th at the Barrow Neurological Institute here in Phoenix.

 

I take no meds for it nor do I want to. I know I can beat this if I had .... what?  If  there was something I could do, physical exercise, meditation, etc? I want to stop taking Mirapex which I feel is the root of this problem.  Current urologist not motion disorder one. He did give me tests hen no one else did, but have the feeling he has reached the end of his Parkinson knowledge.

 

Moved to Phoenix to get apointment at Barrow. Been here since November 2006 and have yet to make a good friend. I have this one terrible fault, i am opinated.  have tried to squelch it but it just pops out, so have not interacted much with people, so not to offend.

 

When I am losing interest in going on computer, when I used to be a computer junky, then I know I have reached low plateau.  Usually can just laugh and bounce back up, but this time I am down too long. Joined another group recently and don't think I fit in. They all seem so happy and together.  What to do.....

 

Kelly

I've been told many great stories this morning , of companionship and
compassion from the Unity Walk ! Of friends meeting for the first
time , of many hugs and smiles and of wonderful relationships
continuing ! This is what our Parkinson's community is all about !
People caring , sharing and enjoying each other ! It's another
tremendous day in the parkie neighborhood !

--- In plwp2@yahoogroups.com, "michael johnston" <tennmike1957@...>
wrote:
>
> Margaret, a little story for you ! It is an exert from my story !
> Hope you enjoy !
>
> You have got to be kidding ! Pt. 2
>
> After my first diagnosis of Parkinson's Disease , I searched for
the
> answer  to " Why me?"   So I dug into this internet thing !
> Searching for the answer ! I found a site that was called PLWP ! It
> was supposed to be a Parkinson's support chat room !  PLWP ? What
did
> that mean ? After arriving on this site , It said this was for
people
> living with Parkinson's ! PLWP !  Living ? Hum ! Must not be a
death
> sentence ! There I found people , so supportive and full of life ,
> living with this disease that I knew nothing of !  I finally got
help
> getting set up for chat ! There was this special lady there when i
> arrived , at 3 am , what was she doing here? She talked with me and
> introduce me to others as they came in ! I could never explain how
> this truly impacted my life !  It probably saved me from myself ,
as
> I was on the edge ! As I sat and listened and read the text ,
> quietly , I became a member of this very supportive group !
>
> Then came my second opinion ! I searched for a neuroligist that
> specialized in Parkinson's Disease and something called "movement
> disorders" ! I was told there was a  group in my home state of
> Tennessee , in Nashville , that was very interested in Parkinson's
> Disease ! Especially this thing called " young onset Parkinsons
> Disease ".  So I went there ! They had me tap my foot , tap my
> fingers , touch my nose  then his finger and of course ... walk
down
> the hall and back . As I passed the Doctor and his research
> assitatant in the door way , he said " Son , you have
Parkinsons " .
> What was it with this walk down the hall ? Why was that always the
> tell tell sign ? We talked , they questioned all my life history
> concerning exposures .
>
> I was invited to a reunion of their patients . Wow ! What an eye
> opening experience !  I was by no means ready for this ! There was
a
> buffet set up in the lobby !  People shaking , stammering to get
> words out , freezing in their tracks , dropping things , spilling
> things , arms jerking , heads jerking ! Boy ! are the caterers
really
> going to love us ! Only a trip to the Men's room , brought some
sense
> of humor to this ! As I stood at the urinal beside other Parkies ,
it
> dawned on me , " Boy this gives new meaning to shakin' it !"  It
was
> mind opening !
>
> So, back to the chat room .  Searching for more answers , I
> determined that I would wait till I could no longer deal with the
> tremor before I subsided to medication .  I searched the area for a
> local support group . Thank GOD I found this bunch !  All
> extraordinary in there own right .  Teachers , chemists ,
ministers ,
> vetereans , but all in their own way very talented
> and....essentric .  Not in a bad way  , but with an outlook on life
> like I have !  Doomed by this disease? ... not this bunch ! Full of
> life , very supportive and caring !  Again , just in the nick of
> time ! Again I was on the edge , but again found what I needed !
>
> This was about the time when my wife said  to me out of the
blue .."
> I have no intention of wiping your butt the rest of my life ! I
need
> someone who can financially care for me and MY daughter ! I want a
> divorce !"  This was a tramatic experience as she is the vindictive
> type ! My progression began to quicken until I got hold of my
> emotions !
>
> Then , my first Parkinson's seminar ! A group Doctors , telling
> about  symptoms , treatments  and generally talking above my
head .
> Then , at the microphone, a lady , shaking like me ! She talked of
> her trials with Parkinson's Disease .  Then all of a sudden she
> looked up toward the ceiling and said " WHY ME?"  Then she looked
> down and paused .... and answered herself ... " WHY NOT ME !"
You
> have got to be kidding !  She had the answer to my question ! Why
not
> me !
>
> Your Friend in PD !
>
> Michael
>
> --- In plwp2@yahoogroups.com, "psalm40_1_2" <ancala1@> wrote:
> >
> > Margaret, you have been through a lot....BUT, you have such a
great
> > attitude.  I know exactly what you mean when you sometimes
say "why
> > me"....we all do that.  But, it is vital to take each day as a
gift
> > & make the most of it.  It really does help to look for the
> > positives.  In my life, it is my faith in God & my awesome family
> > that gives me strength & hope and love!!
> > God bless you with a joyful spirit to embrace each day.
> >
> >
> > --- In plwp2@yahoogroups.com, "Margaret Swope" <merogers1@> wrote:
> > >
> > > I am a 57 yrs. old female and in Oct. 2004 had a minor stroke,
3
> > days
> > > later verified that I have parkinsons, the very next day had
> > another
> > > stroke leaving me paralized on my left side. Through a lot of
> > prayers
> > > and a year of physical therapy, I was blessed by having
> everything
> > back
> > > to normal, except for the parkinsons. I can finish my life out
by
> > > saying, "Why me" and being bitter or looking at the bright side
> > and
> > > saying " Why not me". Please don't get me wrong, I have my
pitty
> > me
> > > moments, I am only human, but it is a waste of time and
energy.
> I
> > am
> > > so thankful for my family, friends, and my cocker spaniel named
> > Boomer.
> > > My PD has increase these past few months, but I am fortunate to
> > live in
> > > Florida and to be able to go outside.
> > > I am also grateful for finding this group and meeting new
friends.
> > > Thank you.
> > >
> >
>Thank you for making feel, that I'm not alone.
Margie

--- In plwp2@yahoogroups.com, "torontolou" <torontolou@...> wrote:
>I gambled on mirapex too. I was always broke. Never got into
stealing.
>
>
> Dangerous Drug
>
> Subject(s): Letters Contempt for Mirapex and the FDA:
>
> The Houston Press, and Todd Spivak in particular, are to be
commended on
> the
> recent story on the havoc wreaked upon an unsuspecting, already-
> troubled segment of our population -- Parkinson's disease patients -
-
> by the makers of a dopamine agonist called Mirapex
["Overstimulated,"
> September 15].
>
> My life previous to Mirapex was one I was proud of: I was with an
> intelligence agency attached to the U.S. defense department; I was
in
> a responsible position; I held some of the most sensitive security
> clearances and accesses that exist in the U.S. government. I was
> required to take polygraph examinations and to undergo regular
> background investigations aimed at ensuring that my personal life
and
> behavior were beyond reproach, and that I was worthy of the trust
> placed in me by my country. I had little or no interest in gambling,
> and never spent more than $3 or $4 a month on it. My credit rating
> was outstanding.
>
> After Mirapex, I was a lying, deceitful, totally degenerate gambler
> and a miserable thief, hanging around casinos day after day, my eyes
> fixed on the floor, looking for lost slot machine tokens. I pilfered
> wherever I could in order to feed my gambling habit. Never before in
> my life had I written a bad check or come anywhere near depleting a
> credit card. While in my drug-addled state with Mirapex, however, I
> had checks bouncing all over town, and I maxed out several cards. My
> finance charges alone were staggering. I lied, on a regular basis,
to
> my wife, my brother, my bankers and my stockbroker, telling every
> falsehood I could think of to obtain more money to gamble with. I
was
> in a horrible downward spiral, with no solution in sight.
>
> Then came Dr. Mark Stacy's report in August 2003, and my life was
> saved. Stacy linked Mirapex with self-destructive compulsive
gambling
> behavior in a landmark study in Phoenix. This research was recently
> validated by Dr. Leann Dodd at the Mayo Clinic.
>
> Since stopping the use of dopamine agonists entirely, I have not
> gambled a single penny on anything. I can drive right past a casino
> without feeling the slightest urge to go inside. I have no interest
> in gambling whatsoever. My credit rating has been restored and I am
> solvent again, but far behind where I was pre-Mirapex.
>
> My contempt for Pfizer and Boehringer Ingelheim, the makers of this
> drug, knows no bounds. Since 1999, there has been mainstream
> reporting, mostly from Europe, linking this class of drugs to
> compulsive gambling. The Web is chock-full of stories like mine --
> some even worse. Yet the drug companies are actively marketing this
> poison to additional audiences: people afflicted with restless-leg
> syndrome and fibromyalgia. Nothing is allowed to stand in the way of
> even greater profits, no matter who is hurt.
>
> Lest I forget -- I must ration my contempt and save some for the FDA
> and my elected officials in Washington, D.C. All of them can be best
> described by the term "teats on a boar-hog.
>

--- In plwp2@yahoogroups.com, gloria sanchez <sancglo@...> wrote:
>
> So, does your mind just go blank in the middle of discussion? or
explanations?  I had to give up group relations consulting because of
brain-erase,
>
>   and, i bump into things all of the time, and fall sideways when
turning around.  It's the pits.  We all laugh it off!
>
> shawn <shawnee_na@...> wrote:
>           This my biggest problem lately. I am sick of bumping into
things. I
> always have bruises. How is everyones memory lately. I feel like I
am
> losing it. I know this is a form of dementia, I just hope it
doesn't
> come too soon. I am 57 years old.
>
> No I don't do the "brain erase thing" as you put it, yet. I am just
so tired all the time and the least amount of physical activity such
as doing laundry makes me want to go lie down. I notice lately I have
trouble remembering how to spell. I don't fall yet.
>
>
>
>
> ---------------------------------
> Ahhh...imagining that irresistible "new car" smell?
>  Check outnew cars at Yahoo! Autos.
>

For those of you who don't know about Joni:
http://www.joniandfriends.org/about_joni.php

We all have our "trials" in life.  With PD....I have done the "why me"
quite a lot!  Then I also think...."why not me"?
Joni has lived in her wheelchair for 4 decades now & her message of
HOPE to those who feel hopeless is a true inspiration.

She spoke last night at our church & shared many stories...stories of
desperate people.  Some quadraplegic, some with cancer, MS, PD, etc.,
etc.  Bottom line, she shared her wonderful faith & hope in God & used
a line frome the movie Shawshanke Redemption.  "Without hope, we have
nothing...you can either get busy living or get busy dying".

I choose to get busy... not just living.....but living each day as a
gift...first, to receive & then share & give back to others.

Wishing you all a great day....filled with HOPE!

Michael i think your post was great in every way but one.

If you are man enough to make a post like the please tell the truth,

for your not going. I was just thinking of why you would not go and

it came to me, grits.  You are not going because they are not having

grits for breakfast????  i also would like tobe there, and i wish i

were there as well


Great post Michael
-


-- In plwp2@yahoogroups.com, "michael johnston" <tennmike1957@...>
wrote:
>
> This morning our friends , their families and freinds and Parkies
we've
> never met will join together in New York City's  Central Park to
walk
> in the Unity Walk to help raise awareness and donations for
Parkinson's
> Disease ! I hope the weather breaks for them and they get a
beautiful
> day for their quest ! But anytime this many people gather in one
> cause , it is bound to be a beautiful day ! I regret I and so many
> others that are in our community are not able to attend ! One day ,
> maybe , we will all make it together ! But we will be there in
spirit
> to give support ! A hug is sent to each and everyone there and the
ones
> not there also !>>>HUGS<<<,  May GOD bless them and give them each
the
> strength to make this walk around the park ! Have a very wonderful
day !
>
> Your friend in PD !
> Michael
>

This morning our friends , their families and freinds and Parkies we've
never met will join together in New York City's  Central Park to walk
in the Unity Walk to help raise awareness and donations for Parkinson's
Disease ! I hope the weather breaks for them and they get a beautiful
day for their quest ! But anytime this many people gather in one
cause , it is bound to be a beautiful day ! I regret I and so many
others that are in our community are not able to attend ! One day ,
maybe , we will all make it together ! But we will be there in spirit
to give support ! A hug is sent to each and everyone there and the ones
not there also !>>>HUGS<<<,  May GOD bless them and give them each the
strength to make this walk around the park ! Have a very wonderful day !

Your friend in PD !
Michael

Margaret, a little story for you ! It is an exert from my story !
Hope you enjoy !

You have got to be kidding ! Pt. 2

After my first diagnosis of Parkinson's Disease , I searched for the
answer  to " Why me?"   So I dug into this internet thing !
Searching for the answer ! I found a site that was called PLWP ! It
was supposed to be a Parkinson's support chat room !  PLWP ? What did
that mean ? After arriving on this site , It said this was for people
living with Parkinson's ! PLWP !  Living ? Hum ! Must not be a death
sentence ! There I found people , so supportive and full of life ,
living with this disease that I knew nothing of !  I finally got help
getting set up for chat ! There was this special lady there when i
arrived , at 3 am , what was she doing here? She talked with me and
introduce me to others as they came in ! I could never explain how
this truly impacted my life !  It probably saved me from myself , as
I was on the edge ! As I sat and listened and read the text ,
quietly , I became a member of this very supportive group !

Then came my second opinion ! I searched for a neuroligist that
specialized in Parkinson's Disease and something called "movement
disorders" ! I was told there was a  group in my home state of
Tennessee , in Nashville , that was very interested in Parkinson's
Disease ! Especially this thing called " young onset Parkinsons
Disease ".  So I went there ! They had me tap my foot , tap my
fingers , touch my nose  then his finger and of course ... walk down
the hall and back . As I passed the Doctor and his research
assitatant in the door way , he said " Son , you have Parkinsons " .
What was it with this walk down the hall ? Why was that always the
tell tell sign ? We talked , they questioned all my life history
concerning exposures .

I was invited to a reunion of their patients . Wow ! What an eye
opening experience !  I was by no means ready for this ! There was a
buffet set up in the lobby !  People shaking , stammering to get
words out , freezing in their tracks , dropping things , spilling
things , arms jerking , heads jerking ! Boy ! are the caterers really
going to love us ! Only a trip to the Men's room , brought some sense
of humor to this ! As I stood at the urinal beside other Parkies , it
dawned on me , " Boy this gives new meaning to shakin' it !"  It was
mind opening !

So, back to the chat room .  Searching for more answers , I
determined that I would wait till I could no longer deal with the
tremor before I subsided to medication .  I searched the area for a
local support group . Thank GOD I found this bunch !  All
extraordinary in there own right .  Teachers , chemists , ministers ,
vetereans , but all in their own way very talented
and....essentric .  Not in a bad way  , but with an outlook on life
like I have !  Doomed by this disease? ... not this bunch ! Full of
life , very supportive and caring !  Again , just in the nick of
time ! Again I was on the edge , but again found what I needed !

This was about the time when my wife said  to me out of the blue .."
I have no intention of wiping your butt the rest of my life ! I need
someone who can financially care for me and MY daughter ! I want a
divorce !"  This was a tramatic experience as she is the vindictive
type ! My progression began to quicken until I got hold of my
emotions !

Then , my first Parkinson's seminar ! A group Doctors , telling
about  symptoms , treatments  and generally talking above my head .
Then , at the microphone, a lady , shaking like me ! She talked of
her trials with Parkinson's Disease .  Then all of a sudden she
looked up toward the ceiling and said " WHY ME?"  Then she looked
down and paused .... and answered herself ... " WHY NOT ME !"    You
have got to be kidding !  She had the answer to my question ! Why not
me !

Your Friend in PD !

Michael

--- In plwp2@yahoogroups.com, "psalm40_1_2" <ancala1@...> wrote:
>
> Margaret, you have been through a lot....BUT, you have such a great
> attitude.  I know exactly what you mean when you sometimes say "why
> me"....we all do that.  But, it is vital to take each day as a gift
> & make the most of it.  It really does help to look for the
> positives.  In my life, it is my faith in God & my awesome family
> that gives me strength & hope and love!!
> God bless you with a joyful spirit to embrace each day.
>
>
> --- In plwp2@yahoogroups.com, "Margaret Swope" <merogers1@> wrote:
> >
> > I am a 57 yrs. old female and in Oct. 2004 had a minor stroke, 3
> days
> > later verified that I have parkinsons, the very next day had
> another
> > stroke leaving me paralized on my left side. Through a lot of
> prayers
> > and a year of physical therapy, I was blessed by having
everything
> back
> > to normal, except for the parkinsons. I can finish my life out by
> > saying, "Why me" and being bitter or looking at the bright side
> and
> > saying " Why not me". Please don't get me wrong, I have my pitty
> me
> > moments, I am only human, but it is a waste of time and energy.
I
> am
> > so thankful for my family, friends, and my cocker spaniel named
> Boomer.
> > My PD has increase these past few months, but I am fortunate to
> live in
> > Florida and to be able to go outside.
> > I am also grateful for finding this group and meeting new friends.
> > Thank you.
> >
>

I'm sad to hear of your set back. I feel like a "poser" sometimes; my symptoms are so light. But I know there are trials ahead. When you share yours with us it makes them not quiet scary.

 

Your are quality, my friend.....debb 

 

 

"Jim Evridge AKA:Silverfoxx" <silfoxx2002@yahoo.com> wrote:

Hi All,

 

For four years now all of you have been reading of the glorious and miraculous experiences since my lone Soletra has been turned on.   All of that has dramatically changed, as of my last reprogramming session, yesterday, and  have not yet fully recovered from. 

 

Don't get me wrong,  I am still getting bilateral results from my unilateral implant,  it's just that it can't do any more for me than what it is now doing for me!  I will try to describe yesterdays session as explicitly as possible, while still "fresh" in my mind.  This will be rather candid,  as it should be.  There is no need, or reason to "hide" anything.  A little caveat:  I have advanced Parkinson Disease.  I am now "classified" (God, I hate that word!) as being in Stage Four PD (Hoehn & Yahr Scale).  What that means is "Symptoms on both sides of the body. Moderate difficulty walking."  (and that's with my Soletra turned on!) 

Without my stim turned on, I am very close to Stage Five PD: Symptoms on both sides of the body. Unable to walk, especially when my stim is off.

 

Simple explanations of my present PD status, but to all of us with PD, we all know that there is much more to the debilitating aspects of PD than just those "simple" explanations!

 

Plus, I was asked to be totally unmedicated for at least 24 hours prior to my appointment!

 

Anyway, here is what occurred yesterday:

 

Initial scanning with the telemetry unit found that all of the settings obtained last August were still in effect.  Even the "stored power" remaining in the Soletra battery was unchanged, 3.71 volts.  My output power was still "going strong" at 4.5v.  However,  I was experiencing almost constant "break through" tremors on my entire left side, with very limited/occasional tremor "break throughs" on my right side.  All recognized by the tech and my neurosurgeon.  The procedure began with one tenth of a volt power increases increases.  To reduce the tremoring in my left side I was taken up to 5.2 v output  to my brain.  Then the "not so nice" things began occurring.  I was losing my ability to speak coherently, my vision was being greatly compromised, and, my walking abilities were affected.  In short,  it was as if I had been drinking all night and was totally inebriated!. 

 

Every aspect of brain stimulator programming "technique" was being used.  Amplitude, pulse width, changing contact points, mono to bi polar changes.  Nothing was working!  As actual fear and associated stress began overtaking me there was a dramatic escalation of the PD symptoms in both sides of my body!  One important fact you should all keep in mind, as I had to force myself to do:  it wasn't the programming, per se, causing the problems.  It was me, allowing my fears to "invade my conscious thoughts", thus, raising my own stress levels that caused the dramatic increase in my PD symptoms.

 

I requested that my settings be "put back" to where they were when I arrived.  I then "took a coffee break" while the doc and tech "compared notes" about what had happened.

 

Since all of us DBS patients are an integral part of any programming sessions, the "bottom line" is, and always shall be, what we expect from our stimulators.  I wanted as much symptom relief as possible.  The same expectations we all desire.  So, I went back into the exam room with the clear thought of being in control, while still allowing the doc to think he was in control.  My request of just a voltage increase was "honored".

 

Slowly the voltage was taken up in one tenth of a volt increase.  Once again, problematic.  However,  we "settled" on a voltage of 4.7 volts to my brain.  There are still a few intermittent "break through" tremors in my left forearm, but that is the "trade-off" I have to expect for now.  What does my DBS future hold for me?

 

As soon as I make the appointment with my Temple Univ MDS, the evaluation process will begin for my 2nd DBS/STN along with the implantation of the Kinetra Stimulator.  One major difference between this DBS and my first one four years ago,  my next DBS will be frameless!

 

In short,  I was hoping, against hope,  that my "miracle" with the one implant would hold true forever.  Alas,  it didn't. 

 

I'm a little "down" today, mentally,  but have no fear ..... my fighting spirit against ole man parkie has not waned one iota!  So,  instead of being half bionic,  I'll be 100% bionic ...... with bright blue "glow in the dark" eyes to match Rogers' "glow in the dark"  green ones.

 

Jim Evridge   "AKA:SILVERFOXX_FIGHTING_BACK"

Pennsville, NJ

 

 

PS:  I will be offline for several days,  My wife and I are going to our vacation place to allow me to recuperate.  I will be back next Tuesday or Wed.

 

"We are so unlike one another.  As different as the sun, the moon, and all of the stars in the night sky. Yet, through this illness we share, We are as one!"  Jim Evridge "AKA: SILVERFOXX_FIGHTING_BACK"   

 

"Be the change you want to see in the world."   Gandhi

 

 

 

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

http://www.microsoft.com/enable/at/default.aspx?v=t


Assistive technology products are specialty products designed to
provide additional accessibility to individuals who have physical or
cognitive difficulties, impairments, and disabilities.

If you have a special need for home ideas or you have come up with a
device that will help others please send me the information so I can
put in a book to help others.

plwp has many facets but the main reason for plwp as I see it, is a
group of people wanting to help others. We all have special talents of
some sort, and you cannot take them with you.

As it is said together we can make a difference, if you do not vote
your voice will not be counted.

I am just one person that has a great deal of knowledge of homes and
computers. Plwp is the method I use to share with others.  Please help
others with the knowledge you have. TWCMAD Together We Can Make A
Difference.  Let's get mad about helping others in a positive way.

I will be posting ideas each week on home and computer improvements.
Please send me your questions or ideas so your vote will be heard also.

We have but one life to live but we can share that life with many. Let
plwp be your method of sharing your idea. I have over 3000 copyrights
credit to my name. So now I will write a book on home improvements and
your name will be credited for your ideas. Very much like a cookbook.


Title PLWP Together We Made a Difference

Having said all that I want to give a special thanks to Karen Mankey
for being there in my times of need. Karen will always be a special
person to my wonderful wife Fran and too myself. For such a small
person she can move mountains.

Tell the people that have made a difference in your life, thank you.
Your voice must be heard

robertbchandler@...

TWCMAD   TOGETHER WE CAN MAKE A DIFFERENCE

Hi All,

 

For four years now all of you have been reading of the glorious and miraculous experiences since my lone Soletra has been turned on.   All of that has dramatically changed, as of my last reprogramming session, yesterday, and  have not yet fully recovered from. 

 

Don't get me wrong,  I am still getting bilateral results from my unilateral implant,  it's just that it can't do any more for me than what it is now doing for me!  I will try to describe yesterdays session as explicitly as possible, while still "fresh" in my mind.  This will be rather candid,  as it should be.  There is no need, or reason to "hide" anything.  A little caveat:  I have advanced Parkinson Disease.  I am now "classified" (God, I hate that word!) as being in Stage Four PD (Hoehn & Yahr Scale).  What that means is "Symptoms on both sides of the body. Moderate difficulty walking."  (and that's with my Soletra turned on!) 

Without my stim turned on, I am very close to Stage Five PD: Symptoms on both sides of the body. Unable to walk, especially when my stim is off.

 

Simple explanations of my present PD status, but to all of us with PD, we all know that there is much more to the debilitating aspects of PD than just those "simple" explanations!

 

Plus, I was asked to be totally unmedicated for at least 24 hours prior to my appointment!

 

Anyway, here is what occurred yesterday:

 

Initial scanning with the telemetry unit found that all of the settings obtained last August were still in effect.  Even the "stored power" remaining in the Soletra battery was unchanged, 3.71 volts.  My output power was still "going strong" at 4.5v.  However,  I was experiencing almost constant "break through" tremors on my entire left side, with very limited/occasional tremor "break throughs" on my right side.  All recognized by the tech and my neurosurgeon.  The procedure began with one tenth of a volt power increases increases.  To reduce the tremoring in my left side I was taken up to 5.2 v output  to my brain.  Then the "not so nice" things began occurring.  I was losing my ability to speak coherently, my vision was being greatly compromised, and, my walking abilities were affected.  In short,  it was as if I had been drinking all night and was totally inebriated!. 

 

Every aspect of brain stimulator programming "technique" was being used.  Amplitude, pulse width, changing contact points, mono to bi polar changes.  Nothing was working!  As actual fear and associated stress began overtaking me there was a dramatic escalation of the PD symptoms in both sides of my body!  One important fact you should all keep in mind, as I had to force myself to do:  it wasn't the programming, per se, causing the problems.  It was me, allowing my fears to "invade my conscious thoughts", thus, raising my own stress levels that caused the dramatic increase in my PD symptoms.

 

I requested that my settings be "put back" to where they were when I arrived.  I then "took a coffee break" while the doc and tech "compared notes" about what had happened.

 

Since all of us DBS patients are an integral part of any programming sessions, the "bottom line" is, and always shall be, what we expect from our stimulators.  I wanted as much symptom relief as possible.  The same expectations we all desire.  So, I went back into the exam room with the clear thought of being in control, while still allowing the doc to think he was in control.  My request of just a voltage increase was "honored".

 

Slowly the voltage was taken up in one tenth of a volt increase.  Once again, problematic.  However,  we "settled" on a voltage of 4.7 volts to my brain.  There are still a few intermittent "break through" tremors in my left forearm, but that is the "trade-off" I have to expect for now.  What does my DBS future hold for me?

 

As soon as I make the appointment with my Temple Univ MDS, the evaluation process will begin for my 2nd DBS/STN along with the implantation of the Kinetra Stimulator.  One major difference between this DBS and my first one four years ago,  my next DBS will be frameless!

 

In short,  I was hoping, against hope,  that my "miracle" with the one implant would hold true forever.  Alas,  it didn't. 

 

I'm a little "down" today, mentally,  but have no fear ..... my fighting spirit against ole man parkie has not waned one iota!  So,  instead of being half bionic,  I'll be 100% bionic ...... with bright blue "glow in the dark" eyes to match Rogers' "glow in the dark"  green ones.

 

Jim Evridge   "AKA:SILVERFOXX_FIGHTING_BACK"

Pennsville, NJ

 

 

PS:  I will be offline for several days,  My wife and I are going to our vacation place to allow me to recuperate.  I will be back next Tuesday or Wed.

 

"We are so unlike one another.  As different as the sun, the moon, and all of the stars in the night sky. Yet, through this illness we share, We are as one!"  Jim Evridge "AKA: SILVERFOXX_FIGHTING_BACK"   

 

"Be the change you want to see in the world."   Gandhi

 

 

 

---

Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

Thank you for all your responses it really helps really enjoyed the
story about the cop!! But not a good thing for them to ever think a
cop is scared really not where my husband works he works in what is
known as "The Hood" the worst othe worst but so far he has learned
tricks to keep his shaking hidden. But to the lady talking about not
being able to speak my husband has that he calls them brain farts!! He
knows what he wants to say and can even see the word in his head but
it doesn't come out so I totally understand that one it is very
upsetting to him. Thanks to all