Donna

July 6, 2002

Donna,

What Mike said.

Actually, I sometimes think I am better now than I was my first 12 to 18

months. I think it is because, as I have adapted, it just seems to not be

as bad. A lot of times new folks will mention something that reminds me,

" Oh, yeah, I had that. I forgot. It just went away. " As hard as it is to

try not to worry or wonder, I really think it is in your best interest to

take Mike's advice and dwell on the good stuff. Can't change the bad

anyway, and worrying about it, thinking about it, wondering about it, only

adds to your stress, which in turn will make your overall condition worse.

I firmly believe that " attitude is everything " . I hope I don't sound ike I

am trying to tell you how you feel. I'd never do that. We are all just too

different. No one can know how each of us feels or what will work for us.

Just because it works for me sure doesn't mean it will cure you. I think

the best I can do for you is share my thoughts and ideas and let you decide

what you want to try. I wish I could help you get past all your initial

fears and worries. I think, at some point, most of us just settled into

this new way of living and I know, it was at that point, my life started to

get easier. Once I knew it wasn't gonna' kill me, I couldn't change it and

no one else could change it for me, I think I decided I'd better just get on

with the rest of my life.

Of course, I'd rather not have PLS, but then I'd also like to be rich,

skinny and pretty. Those things aren't going to happen either, but they

don't keep me from being happy and positive. I have too many other things

to think about.

Ronnie

Re:

> Donna,

>

> It is difficult to determine how fast PLS progresses, as each case is

> different. Rita has had it for over 20 years and gets along better than

> some who have just been diagnosed 2 or less years ago. I am slow

> progressing, also. I was off work for 18 1/2 months from 2/95 to 8/96. I

> had to return in a different job than what I had before, but it was the

one

> I had begun working at the State Hospital with - a member of the

Psychology

> Department. I'm a licensed mental health counselor, marriage and family

> therapist and clinical social worker (Trying to cover all the bases.) I

> have been able to do the job for almost 6 years now. Still drive and found

> out I can drive 2 and 1/2 hours one way. I don't believe I can turn around

> and drive back the same day, however. I still fall occasionally and some

of

> them require trips to ER, but that has only happened once this year, in

> January. I have had to see the State Hospital's doctor for x-rays once,

> too. I fell and blood started pouring out my nose. This was in the office

> area and a Social Worker, who also has a tendency to fall, was right

behind

> me and said that I just seemed to fall stiff and on my face. I didn't

trip,

> get pushed, or anything. I just went down with no warning. My nose wasn't

> broken, but I did have two cracked ribs. They healed quickly, Thank You,

God.

>

> The progression I have noticed is an increase in spasticity, which was

> relieved by an increase in my baclofen. Either that, or the four wheeled

> walker a doctor with whom I work loaned me. I got both the same day and

> don't know which is the important variable. I have frequent close calls

> with falls, but the other day my left stiffened while I was walking and I

> didn't fall. This has always led to a fall for me. Also, I have noticed

> some problems with my neck and shoulders getting stiffer and sore almost

> daily. This has decreased some, again after the med increase and the use

of

> the wheeled walker. Still no way to determine the more important variable

> without changing one of them, which I am not willing to do.

>

> My hands have become stiffer and my ankles and lower legs have begun to

> swell and stiffen during the latter part of the day, but I don't believe

it

> related to PLS. I'm not going to make it the scapegoat for everything,

> unless it is convenient for me

>

> I know others have been telling you some of their stories and I hope some

> will also tell you about their progression. I can only tell you what my

> neurologist told me when pressed for what I could expect in the future.

> " I'm not a fortune teller. Only time will tell. " I don't worry about it. I

> let tomorrow worry about itself. Attitude seems the best way to manage

this

> disease that " sucks. " With a good attitude, your good days are much more

> frequent than your bad days. If you pay too much attention to the negative

> and not the positive, then your mind will automatically look for the bad

> and ignore the good. The healthy mind does not judge, it just takes in

what

> we give it. We make it what we want it to be according to our belief

system.

>

> Sorry, I just felt I had to do a lecture. I get carried away sometimes.

>

> Take good care of yourself and look for the positives.

>

> Mike Gray Logansport IN

>

> At 12:25 PM 7/6/02 +0000, you wrote:

> >Hi ,

> >Thanks for responding to my question. You helped me understand PLS

> >much better.

> >You said your PLS was fast, how fast? I am trying to gage where I

> >am with my progression. I have a note book I try to keep gaged,

> >but when I have a good day, I think I'm just beeing too pesimistic

> >with my ratings the day before. How long does it take before you

> >say this is worse (instead of saying: I'm just having a bad day)?

> >Thanks for your time,

> >Donna

> >

July 6, 2002

Dear Donna,

Ronnie said:

Of course, I'd rather not have PLS, but then I'd also like to be rich,

skinny and pretty. Those things aren't going to happen either, but they

don't keep me from being happy and positive. I have too many other things

to think about.

While she gave you some wonderful advice, she was horribly wrong in one area.

She said: " I'd also like to be rich, skinny and pretty. " She may not be

rich, she's just a little bit away from being skinny, BUT she is one of the

most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet

as they come so don't let her mislead you. She's also from WV so she has to

be good!!! Take care and God Bless.

July 6, 2002

Dear Donna,

Ronnie said:

Of course, I'd rather not have PLS, but then I'd also like to be rich,

skinny and pretty. Those things aren't going to happen either, but they

don't keep me from being happy and positive. I have too many other things

to think about.

While she gave you some wonderful advice, she was horribly wrong in one area.

She said: " I'd also like to be rich, skinny and pretty. " She may not be

rich, she's just a little bit away from being skinny, BUT she is one of the

most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet

as they come so don't let her mislead you. She's also from WV so she has to

be good!!! Take care and God Bless.

July 6, 2002

Dear Donna,

Ronnie said:

Of course, I'd rather not have PLS, but then I'd also like to be rich,

skinny and pretty. Those things aren't going to happen either, but they

don't keep me from being happy and positive. I have too many other things

to think about.

While she gave you some wonderful advice, she was horribly wrong in one area.

She said: " I'd also like to be rich, skinny and pretty. " She may not be

rich, she's just a little bit away from being skinny, BUT she is one of the

most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet

as they come so don't let her mislead you. She's also from WV so she has to

be good!!! Take care and God Bless.

July 6, 2002

AW, SHUCKS! I hope no one finds out how much you got paid to say that, but

thank you just the same. Takes one to know one.

Re: Donna

> Dear Donna,

>

> Ronnie said:

> Of course, I'd rather not have PLS, but then I'd also like to be rich,

> skinny and pretty. Those things aren't going to happen either, but they

> don't keep me from being happy and positive. I have too many other things

> to think about.

>

> While she gave you some wonderful advice, she was horribly wrong in one

area.

> She said: " I'd also like to be rich, skinny and pretty. " She may not

be

> rich, she's just a little bit away from being skinny, BUT she is one of

the

> most BEAUTIFUL people I have ever had the honor of meeting. She's as

sweet

> as they come so don't let her mislead you. She's also from WV so she has

to

> be good!!! Take care and God Bless.

>

July 6, 2002

AW, SHUCKS! I hope no one finds out how much you got paid to say that, but

thank you just the same. Takes one to know one.

Re: Donna

> Dear Donna,

>

> Ronnie said:

> Of course, I'd rather not have PLS, but then I'd also like to be rich,

> skinny and pretty. Those things aren't going to happen either, but they

> don't keep me from being happy and positive. I have too many other things

> to think about.

>

> While she gave you some wonderful advice, she was horribly wrong in one

area.

> She said: " I'd also like to be rich, skinny and pretty. " She may not

be

> rich, she's just a little bit away from being skinny, BUT she is one of

the

> most BEAUTIFUL people I have ever had the honor of meeting. She's as

sweet

> as they come so don't let her mislead you. She's also from WV so she has

to

> be good!!! Take care and God Bless.

>

July 6, 2002

AW, SHUCKS! I hope no one finds out how much you got paid to say that, but

thank you just the same. Takes one to know one.

Re: Donna

> Dear Donna,

>

> Ronnie said:

> Of course, I'd rather not have PLS, but then I'd also like to be rich,

> skinny and pretty. Those things aren't going to happen either, but they

> don't keep me from being happy and positive. I have too many other things

> to think about.

>

> While she gave you some wonderful advice, she was horribly wrong in one

area.

> She said: " I'd also like to be rich, skinny and pretty. " She may not

be

> rich, she's just a little bit away from being skinny, BUT she is one of

the

> most BEAUTIFUL people I have ever had the honor of meeting. She's as

sweet

> as they come so don't let her mislead you. She's also from WV so she has

to

> be good!!! Take care and God Bless.

>

July 6, 2002

I have to add an emphatic " ditto " to the sentiments about Ronnie. She is

indeed, a beautiful person.

Dolores

P.S. Ronnie, how much are you paying us? I'll have to adjust my next

estimated IRS payment.

Re: Donna

>

> > Dear Donna,

> >

> > Ronnie said:

> > Of course, I'd rather not have PLS, but then I'd also like to be rich,

> > skinny and pretty. Those things aren't going to happen either, but they

> > don't keep me from being happy and positive. I have too many other

things

> > to think about.

> >

> > While she gave you some wonderful advice, she was horribly wrong in one

> area.

> > She said: " I'd also like to be rich, skinny and pretty. " She may not

> be

> > rich, she's just a little bit away from being skinny, BUT she is one of

> the

> > most BEAUTIFUL people I have ever had the honor of meeting. She's as

> sweet

> > as they come so don't let her mislead you. She's also from WV so she

has

> to

> > be good!!! Take care and God Bless.

> >

July 6, 2002

I have to add an emphatic " ditto " to the sentiments about Ronnie. She is

indeed, a beautiful person.

Dolores

P.S. Ronnie, how much are you paying us? I'll have to adjust my next

estimated IRS payment.

Re: Donna

>

> > Dear Donna,

> >

> > Ronnie said:

> > Of course, I'd rather not have PLS, but then I'd also like to be rich,

> > skinny and pretty. Those things aren't going to happen either, but they

> > don't keep me from being happy and positive. I have too many other

things

> > to think about.

> >

> > While she gave you some wonderful advice, she was horribly wrong in one

> area.

> > She said: " I'd also like to be rich, skinny and pretty. " She may not

> be

> > rich, she's just a little bit away from being skinny, BUT she is one of

> the

> > most BEAUTIFUL people I have ever had the honor of meeting. She's as

> sweet

> > as they come so don't let her mislead you. She's also from WV so she

has

> to

> > be good!!! Take care and God Bless.

> >

July 6, 2002

I have to add an emphatic " ditto " to the sentiments about Ronnie. She is

indeed, a beautiful person.

Dolores

P.S. Ronnie, how much are you paying us? I'll have to adjust my next

estimated IRS payment.

Re: Donna

>

> > Dear Donna,

> >

> > Ronnie said:

> > Of course, I'd rather not have PLS, but then I'd also like to be rich,

> > skinny and pretty. Those things aren't going to happen either, but they

> > don't keep me from being happy and positive. I have too many other

things

> > to think about.

> >

> > While she gave you some wonderful advice, she was horribly wrong in one

> area.

> > She said: " I'd also like to be rich, skinny and pretty. " She may not

> be

> > rich, she's just a little bit away from being skinny, BUT she is one of

> the

> > most BEAUTIFUL people I have ever had the honor of meeting. She's as

> sweet

> > as they come so don't let her mislead you. She's also from WV so she

has

> to

> > be good!!! Take care and God Bless.

> >

November 25, 2002

I am going to attend the support group in Somerset, which is about one

hr. from here. I am going to stand up and tell my story, and

hopefully, there is someone there who is close by to me. I also plan

to print up some flyers and I was thinking of putting them into pain centers.

Any advice on what to print? Donna

Tom Nation wrote:

Donna,

Do you have anyone that could help you get a group started? That

would be very helpful. If you can't, what I've heard to do is fix

up some pamphlets about RSD and put your name/number on the back as a contact.

See if you can put them in doctor offices, waiting rooms, wherever someone

might pick it up and read it. When you find others with RSD you can

see if they would be willing to help. Deb and I worked together in

making fliers and taking them to pharmacies, pain centers, where they do

massage therapy, medical equipment stores, etc. Some places have

a policy that they can't put something up, but they can let customers know

about it. We put notices in newspapers, TV stations, etc. Even

a letter to the editor could be helpful. It has been for us.

You need to find a place that would be willing to let you meet--preferably

free. Ours is held in a hospital conference room. At first

you will want to spend time getting acquainted and telling your story.

You could also speak on a topic that you have researched, and maybe provide

information you've found on the subject. As the group grows, you

can start to invite speakers. Hope this helps and I hope you can

get something going.Love,

November 25, 2002