MSA and bifocals

2008-10-31 21:52:15

I seem to remember reading somewhere about MSA
patients having trouble with bicocals. Did I read that
here or somewhere else?
My father wears bifocals but has great difficulty
focusing when he reads. He bought a pair of cheap
reading glasses at Wal-Mart which he wears over his
glasses when he reads and is able to focus. (I don't
know why he doesn't take off his other glasses!) He is
scheduled to see his opthamologist next week to get
new glasses. Would it be best if he didn't go with
bifocals again? Also, can someone explain why people
with MSA have difficulties wearing them?
Thanks!
Melanie in OK

Re: [MSA] HEART ATTACK HOAX

2008-10-31 17:38:42

Hi All,
This is one that can be dangerous to you!! Please check emals before sending
them on.
Both organizations mentioned in the HOAX email have said this technique could
kill you.
Check it out at:
http://www.snopes2.com/
Where it says "Rather than risk killing yourself with cough CPR, those
experiencing a heart
attack should heed the advice of physicians the world over -- down a couple
of Aspirin as an emergency remedy. Doctors believe that during the early
stages of a heart attack, Aspirin -- which is known to prevent blood
platelets
from sticking together -- can prevent a clot from getting bigger. In 1991
Dr. Michael Vance, president of the American Board of Emergency
Medicine, recommended that people who think they are having a heart
attack should "Call 911, then take an Aspirin."
OR:
http://www.viahealth.org/via_news/news1999/99_august_news/heartattack.htm
Which is one of the places mentioned in the Hoax email and says:
"We can find no record that an article even resembling this was produced by
Rochester General Hospital within the last 20 years. Furthermore, the medical
information listed in the article can not be verified by current medical
literature and is in no way condoned by this hospitals medical staff. Also,
both The Mended Hearts, Inc., a support organization for heart patients, and the
American Heart Association have said that this information should not be
forwarded or used by anyone.
Please check content before passing these emails on. ALWAYS check with the
organizations mentioned as Rochester has a big link on it's website about this
email that started in 1999.
Take care, Bill and Charlotte
==================================

Re: [MSA] Aricept

2008-10-31 15:14:16

Dear Mary:
I hope you get the help for Warren from Aricept that we got for Ken.
Do remember that like many other drugs, it doesn't work for everyone. I have
a friend whose husband is a retired physician who has Parkinson's. She
recently went with him to the same Neurologist we go to and asked about
Aricept at my suggestion. The Neurologist told her she had a patient with a
wife you couldn't say no to, so she had agreed to prescribe Aricept for this
woman's husband when asked. The results had been so good that the doctor now
prescribes it often but not always with the same results. I asked my friend
if she had let on that she knew me, but she said she kept quiet and just
nodded. I talked to my friend yesterday, and her husband too is getting
wonderful results. Good luck to you and Warren.
Barbara Smith

hyperbaric oxygen therapy

2008-10-31 00:16:17

I have a friend in UK who swears by HBO chamber. It is a common treatment
there and the cost is affordable for them. Dr. Philip James is an expert in
this area. That is about all I can tell you about it. If you would like more
information, I can forward it to you. My husband has OPCA and we have not
tried it. Seems the physicians here don't believe in it, but if we lived in
UK, we would try it-no doubt because apparently it does not cause any
adverse effects. It would be worth the try for us, but is very expensive
here and you have to get treatments at least weekly or every 2 weeks.
Jeanie

Fw: AND THE BEAT GOES ON - HOW TO SURVIVE A HEART ATTACK WHEN ALONE!

2008-10-30 23:52:39

Tricia Jensen
pajensen@...

hyperbaric oxygen therapy

2008-10-30 15:52:39

Oops! My husband just told me he sent out the letter I had started but
decided not to send. I wanted to check with my friend and get a few facts
correct before sending it. He saw it in the send later file and thought I
had meant to send it. Sorry.

hyperbaric oxygen therapy

2008-10-30 11:40:31

My friend, Anne, has done quite a bit of research on hyperbaric oxygen
therapy. She thought it might be helpful for my mother-in-law's MSA.
Because mom also has a cavernous hemangioma (which was treated with a gamma
knife) the dangers of it becoming active were greater than the possible
benefits to the brain cells. Anne's friend suffers from a vaguely diagnosed
form of MSA in very advanced stages. She went through the treatments and had
some good results in the areas of speach and being able to sit up in her
chair. I don't know if the results were long lasting.

Re: [MSA] Barb on Sunny Texas

2008-10-30 08:45:41

Wow, what a description of your town! Are you close to Shreveport?

It is about time for you to get a dry time.

I am happy to hear that Jan is resting more easily. That always helps the patient and the care giver.

You asked about cooking for one, The cooking is not the problem. Going to the store and buying for one is the problem. I am still in the "stocking of provisions" mode.

I have been taking care of grandsons this week Their other grandmother, who lives with them, has been in hospital with pneumonia. She finally went home today. The boys are precious jewels so we got along fine. This has been a school break time for a week.

This has been a week of thinking for me too. My brother's wife died in her sleep last Saturday morning, out in Oregon. I have not been able to do much except offer comfort. She had not been ill. It was such a devastating experience for him. It was awful the way my Ralph was called away. I at least knew what to expect, but not when. I am in the process of writing him a note but I am finding it difficult to get the words together. It hurts.

My days are full. My evenings are long but I am staying busy. Have been in the process of getting our home in shape for one person and guests when they come. There is just too much in here for one person. But after 51 years of life together, we have collected a lot of personal things. The most difficult thing has been to find someone who can use what he no longer needs.

The kids have taken some things but with the other things they say, "Mom, we do not need it. Give it to someone who does."

We have three kids close by and their kids are close by too. One son is in N.C. with is family. They are good about checking up on me and helping when I call for them, which has not been very often. They were on call for three years while Ralph became more and more disabled. No complaints they just came and did what had to be done.

There is plenty to keep me busy for a long time.

I am learning some new ways of doing things. I am learning to do a bit more of the upkeep, But I was doing that for a while anyway.

If I can get the shower good and dry by morning, the next task is to fill in the tile seals that have cracked. Not a big job but one that needs to be done.

Am going to ask the boys to help me move the contents of Ralph's compost pile to the flower beds. He raised the great big red worms in it for two years.

I have some toss pillows to make for my trundle bed. Have to go through my material box and see if anything suits my taste. The big sewing events quit when my girls grew up and left home and then the grand daughters grew up and got married. It is the way it should be but it sure leaves a hole in the schedule.

Goodness, I am rambling. Just feel like gabbing tonight.

Do you have the Instant Messenger set up on your computer? See if you can get your son to set it up for you. I can send you the directions.

My screen name is mama1330.

The MSA Chat room is open on Sundays at three and a lot of the gang is there every week.

Must shut my mouth and get to the letter I mentioned.

Have a rest filled night and a lovely day.

Barb, in BEAUTIFUL ARLINGTON, TEXAS where the blue bonnets are in bloom all over the place.

Love to you.
[INLINE] HURRAY SPRING IS HERE

Re: [MSA] Tricia...

2008-10-29 22:43:20

Remind me again of what kind of brain injury you had.
I know you've mentioned it, but I forgot. I'm still
curious about the connection b/t my dad's brain injury
and MSA.
Melanie in OK

Barb on Sunny Texas

2008-10-29 21:30:48

YO Springhill LA has had a week without deluge. BEAUTIFUL day with Jan resting more or less peacefully. For him that is using one only suction machine and the fancy bed is performing more or less as it should. His bottom SINKS to the emergency mattress with legs and neck inches higher. Redbuds are out, wisteria showing, spirea aspiring--tis a pleasure to haul trash to the road. How is cooking for one coming along? Think of you often. Enjoy all your cheerful huggies things. LA Louise where azalea blossoms burst open like popping corn.

Marilyn

2008-10-29 09:26:46

Hi,

Where do you get your supplies from for the in and out cath? All I have is the regular foley caths. I know there has to be a logical explanation for the risk to be decreased with in and out caths compared to indewelling but I can't understand how it can be better than doing once a month, sterile caths. The doctors and everyone that does it says that it is best. I quess,as a nurse, that we have sterile technique beat into our heads and that we can't understand anything else being better. If you know the logic behind this please tell me and I will feel better about what we are doing. Like you, my main goal is to keep the risk of infection down.

Thank you for your help, Kathy

Viruses

2008-10-29 06:38:00

http://Vmyths.com/
A good site for checking virus reports.

Have a lovely day.

Barb in Texas, where the sun shines bright and it was 80' today.

[INLINE] [INLINE]

Reminder - CONFERENCE: National Ataxia Foundation ...

2008-10-29 02:18:04

We would like to remind you of this upcoming event.
CONFERENCE: National Ataxia Foundation (Minneapolis area)
Date: Friday, April 6, 2001
Time: All Day
Date: April 6 - 8, 2001
Location: Mystic Lake Casino & Hotel
Prior Lake, MN
(Minneapolis area)
MSA falls under the umbrella of "sporadic ataxia" and will be a
topic at the conference.
Of special interest to MSA patients and relatives will be the
talk by Dr. Sid Gilman
on Saturday, April 7th at 11:00 am.
At registration be sure to tell them to give you a badge that
says MSA so that you can meet other "Birds of a Feather"
throughout the conference.
For more information see:
http://www.ataxia.org/amm2001/index.html
http://www.ataxia.org/amm2001/Registration.html

leg cramps!!!

2008-10-28 17:01:00

Tricia,
There are other medicines to try for the leg cramps like cogentin, Baclofen, and
Amantadine. Ask your doctor about trying one of them or other muscle relaxers.
Take care, Bill and Charlotte
=================================

Re: [MSA] Check out Home

2008-10-28 16:32:20

Barbara,

When and where is your support group. I live in the Glendale, CA area, but there is no group around here. I have had many surgeries at Loma Linda University Medical Center. Are you near Loma Linda, CA?

Tricia Jensen
pajensen@...

Re: [MSA] Fw: Share this with your Nurses and others in direct care

2008-10-28 06:52:27

It's too bad they did not supply her name along with the poem. It makes you cry.

Tricia Jensen
pajensen@...

Fwd: [MSA] Florinef and Salt tabs

2008-10-27 22:37:44

Mary Ann,Hi when i went to mayo they said to do salt tabs with florinef to
keep water in my system more water the better to keep up BP at all times
Ron

Re: Low Potassium levels causes leg cramps!!!

2008-10-27 14:14:10

Mary Ann,
Thanks for the suggestion. Since he's taking florinef, the doctor
checks his potassium at every visit, and so far it's been okay, but I
haven't gotten the results of the most recent test. The doc thinks
the cramping is a Parkinsonian symptom, and that's why Rob takes
Amantadine.
Carol & Rob, in VERY rainy Lexington, MA

this is the Michael Fox organization to write to re MSA

2008-10-27 06:10:51

Copyright 2000 WE MOVE
Editor: Richard Robinson (rrobinson@...)

Fw: Announcement: Documentary on Xenotransplantation

2008-10-27 06:08:00

did anyone send this .. sorry if it is a duplicate

cheers

sheila

Re: [MSA] How stem cell research works (Insulin producing cell rather thanbrain cell)

2008-10-27 04:54:55

If I may ask, your email address says from "Raymond", but you sign with
"Bill". Is "Bill" also used as a nickname for Raymond? Actually, I thought
that would be Ray. Or, do you have a William somewhere in your name.
I dislike being called "Pat", so I usually just tell people my name is
Tricia rather than Patricia. If I say my name is Patricia (which I do
like), everybody automatically calls me Pat. Even if I tell them Patti
(which I tolerate) they still say Pat. Started using Tricia when I was
16, but all my relatives call me Patti Ann. My mother did not like "y", so
she insisted on the "i". I prefer to be called Tricia, but really have to
change gears in my head to listen for "Patti" when I am with my relatives.
I gave up trying to get them to call me Tricia.
Are you in the medical field, or a researcher as a profession? Before my
brain injury, I had been a litigation legal secretary/litigation and
corporate paralegal, but also summarized most of the firm's deposition
transcripts for trial preparation, which often included medical terminology
in addition to the Latin and legal terminology. I returned to the law firm
to which I had worked for the previous 8 years, many times during the years
after my injury, but I could never do the work successfully, remember
deadlines, or keep track of what I had done or had not done. I could put a
document together so automatically and easily at one point, then go to work
on an exact same type of document ten minutes later and suddenly completely
forget what steps to do to get the job done or not be able to comprehend
what I was then trying to read. Could no longer handle the pressure of the
fast pace. The partners, associates, and secetaries all knew my deminished
mental capasity, and tried so hard to help me get back into it, but even
with all the support, I just could not do the work. Keeping lists and
checking items off did not work for me either. I would lose the lists or
forget to check it off, or check the wrong thing off.
I even have trouble cooking now because I cannot remember what I have put or
not put into the pot or bowl. We often have "chicken soup" without the
chicken because I think I put "all" the ingredients in, cover the pot and
turn it on! I can even remember to return to stir it and still not realize
there is no chicken in it. Or, I will leave the bowl to get something else
for it, reach the pantry or fridge and forget what I wanted, or forget what
I am in the process of doing and go off to do something else. I burn a lot
of things, or I forget to turn on the oven to cook it, only to have husband
come home for dinner to find it uncooked. I forget to turn water off and
overrun my sinks.
I always lose my car! This one time, I searched the entire parking lot of a
store, up and down and across repeatedly. Exhausted, crying and convinced
that my car was stollen, went back inside the store to use their phone to
call police and report it missing. Two policemen came into the store, took
the report and description from me where I was sitting near the door,
walked out the door and found my car in the handicapped space right next to
the door. They were laughing so hard, and I was so embarrassed and still
crying. Another time I left the keys locked in the car with the engine
still running on what was a full tank of gas and was in the mall for hours.
I had a new car with the type of new locks that they could not slide
anything into to unlock. AAA had to bust the window. My husband was out of
state with the only other key.
Tricia Jensen
pajensen@...

RE: Vera wonderful day-Jane

2008-10-26 23:59:31

Jane:
I suffered so eating that chocolate pie, but what away to go.lol
HUgs Vera

Low Potassium levels causes leg cramps!!!

2008-10-26 12:42:41

Carol;
...you wrote, Rob has......some cramping in his left foot and leg,...
Cramping in legs might be due to low level of potassium...may want to get a
blood test....in the meantime have him eat a banana.
Mary Ann-MN

Re: [MSA] am searching for a reference

2008-10-26 07:42:18

Shelia,

The first part of your message that I received was cut off. Because of this, I do not know exactly what you want. I have an idea and may be able to help you.

Could you resend your message?

God Bless,

Jim Stark

Re: [MSA] AOL CHAT ANYONE?

2008-10-25 19:35:15

I cannot get into the AOl chat but can go to the MSA Chat
http://home.inforamp.net/~pbower/msachat.htm
Barb mama1330

am searching for a reference

2008-10-25 13:18:06

that contained a MRI scan with the part of the brain that was affected ....

does anyone know how I can access that site?

thx

sheila

AOL CHAT ANYONE?

2008-10-25 12:57:37

any MSA support group members on AOL......
it's 815p EST. come to room KAYE
i'll be here till about 9!
(click on People, type kaye, click on Go)

Bob

2008-10-25 04:40:33

Hi BOB,

Welcome to the group or should I say family.

Take care, Kathy

RE: [MSA] Heavy Legs & other symptoms

2008-10-24 20:25:16

Keeping in mind the "Neapolitan Ice Cream" analogy
Carol & Rob recently shared which suggests that all
MSA patients will have some degree of the 3 MSA
variants at some point, is it typical that only
the SND MSA patients would initially have the muscle
rigity that is often mentioned in discussions about
Parkinsons symptoms? I have not heard Larry mention
anything about this or about feeling heavy, or
about slowed movement. I am also not aware that he
has any of the eye movement problems that are frequently
referred to. He mentioned that the neurologist commented
that the speed of his repetitive pinky to thumb tapping
was slow, but I assume that has more to do with her
assessment of the relative status of the neurological
deficit.
Mainly, besides the balance problem and the HO, he
talks about feeling weak in his knees, about
being extremely fatigued at times, and about having
head aches, but he never mentions having muscle pain,
muscle cramps, rigidity, etc. In fact, now that I
think about it he has never mentioned having the "burning
neck ache" that is mentioned frequently in most materials
I've read about SDS.
It is a beautiful sunny day in Indiana. Hope you
are all having the same good fortune today with
your local weather!
Jerry Cash

Check out Home

2008-10-24 17:44:20

Click here: Home
This site is very interesting. Dr. Iocono spoke to our PD support
group yesterday, and he was very interesting. This is mostly about
Parkinson's, but it seems as if it would be interesting to SDS people too. If
you can't click it, go to www.pallidotomy.com.
Barbara Smith

Re: [MSA] Snoring and Sleep Apnea

2008-10-24 09:59:36

Greetings Jane!
What a good pointer! "Snoring and Sleep Apnea: Sleep Well, Feel Better".
From what I remember, it is a good resource. Thank you for reminding me to
share pointers like this. Here's a quick brain dump.
Another book (though pretty technical) is "The Promise of Sleep : A Pioneer
in Sleep Medicine Explores the Vital Connection Between Health, Happiness,
and a Good Night's Sleep" by William C. Dement, Christopher Vaughan.
But I would check a public library first for both books. Not the type of
thing that you would want to keep as a daily reference.
Also, there are regional support groups for Sleep Apnea called A.W.A.K.E.
For more information on this, head over to:
http://www.sleepapnea.org/
There is an interesting article there about sleep apnea and same day
surgery.
By the way, anyone with severe Obstructive Sleep Apnea should have a Medic
Alert type braclet to note their condition. Essentially in an emergency
medics will need to know that they will need to maintain your airway, since
you will not be able to do so when unconscious. I also have 'Cerebellar
Ataxia' listed on mine (since during an emergency I will have very specific
symptoms that should NOT aggressively be managed). For more information on
Medic Alert:
http://www.medicalert.org/
Hope that helps ...
And Jane, that brain dump wasn't a 'one-up'. Your note is exactly the type
of email that makes this a wonderful group ... lots of pointers to help
others. You just reminded me that I had not shared some of that info.
Thanks.
Regards,
=jbf=
John B. Fisher

Re: [MSA] Dana Brain Institute

2008-10-24 01:41:53

The Feb. 28 issue of "the Brain in the News" published by Dana Press has a
very interesting article in it about glia cells. I don't see it posted yet
on their web site, but it will be before long, I suppose. It is Vol 8, No.
4. The last one they have posted is Vol. 8 No. 2.
If you don't receive this publication, there is information on their website
how to subscribe. Many interesting articles about the latest clinical
research.
Bernice www.dana.org

How stem cell research works (Insulin producing cell rather than brain cell)

2008-10-23 21:26:06

Hi all,
If you are interested in getting a good description of how research works, this
site has a good description of the step by step methods. It is about getting to
an insulin producing cell rather than a brain cell, but it shows how they must
work through step by step. The article is written so that an average person can
understand the complexity without knowing all the terminology.
While all of the talks are interesting the best description of the basic
research is "WHERE WILL WE GET ISLETS?" by
Alberto Hayek, MD
Chairman, Whittier Institute
Acting Director, Scripps Whittier Diabetes Institute, San Diego
http://www.insulinfree.org/articles/transc_99.htm#where
Take care, Bill and Charlotte

Snoring and Sleep Apnea

2008-10-23 14:55:36

I don't remember whether anyone has mentioned this book, which I found
recently at my public library: "Snoring and Sleep Apnea: Sleep Well, Feel
Better" (third edition) by Ralph A. Pascualy, M.D. and Sally Warren Soest,
c. 1996, 2000; Demos Medical Publishing, Inc., 386 Park Avenue South, New
York, New York 10016. $24.95 The foreword is by William C. Dement. M.D.,
Chairman, Nat'l Commision on Sleep Disorders Research, Palo Alto, CA. The
book covers various types of sleep apnea, how to be tested, and treatments.
It seems very thorough.
Jane

Re: [MSA] Fw: Thought you guys might find this interesting.....

2008-10-23 12:48:55

Senator Haywood and Denise:
A inspirational article. I never cease to be amazed at the strength of family
bonds...even in the wide gap of great differences. I hope that some
expression of "passion" may follow you on this tough journey.
Mary

Re: Spring

2008-10-23 08:37:31

TN is getting some snow on the first day of spring. Marilyn

Re: hyperbaric oxygen therapy

2008-10-23 05:54:18

Does anyone know anything about hyperbaric oxygen therapy? A couple of
people in our town have had this treatment in FL and think that it has
really helped them with stroke related issues.
Marilyn in TN

Re: [MSA] Florinef and Salt tabs

2008-10-22 23:45:37

Mary Ann,
Here is a source (from Charmayne's website under symptom management and OH info)
of info on orthostatic hypotension that mentions salt and the effect of florinef
on getting salt into the blood.
http://www.tchain.com/otoneurology/disorders/medical/orthostatic.html
Take care, Bill and Charlotte
================================

Fw: Web of Care Eflyer March 21 - <a href="/group/shydrager/post?postID=8WCR9dG4g5-yCkFnDBozEB9JyIoHAxGddf2gGTQbOhWRjw8AJv_n136HaaRprmIBCevvj4tMZqTxKwk">27ndor@...</a>

2008-10-22 14:30:06

Don't know how many of you know about this resource for incontinent supplies
and other things. Thought I would pass it along. I have found them very
helpful and reasonable.
Sent: Monday, March 19, 2001 7:33 PM
Subject: Web of Care Eflyer March 21 - 27
WEB OF CARE E-FLYER SALE
Careshop Specials on Caregiving Products
For the week of March 21 - 27
Dear Bernice,
Here are your monthly specials on our popular Incontinence Care supplies. We
promise unbeatable prices, and quick, discreet delivery. Your privacy,
security and satisfaction are guaranteed.
* Need help choosing products? Email memberservices@... or call
toll-free 1-866-932-2266.
* Read our medically approved incontinence care information at
http://www.webofcare.com/emailmembers/special/inc_information.html. And be
sure to view the animated caregiving skills below.
* Free shipping on orders of $50 or more.

Re: [MSA] Lupus

2008-10-22 03:46:04

My husband has sds and our daughter has lupus as far as i know they have
nothing to do with one another.
Ralph has had sds for over 17 years are daughter has had lupus at less 6
years
Blanche

Florinef and Salt tabs

2008-10-21 21:24:00

Hi all;
Mom and I are keeping Anne in prayer for her up coming surgery, as most of
you all are too.
A friend of Mothers and mine, at the Home, also needs prayer. Robert Wilson,
age 62, needs new lungs or a miracle. He is in the hospital at this time
with emphysema.
Now for my question about salt and Florinef. Is there some documentation
dealing with the issue of increasing the salt to make Florinef more
effective? I mention this to the nurses and the nurse practitioner and they
tell me it goes against all they have read. Mother is on a high salt
diet,,,,,meaning the salt shaker is on the table. Mother can NOT salt her
food her self. She needs help to eat. So sometimes she gets salt on her food
and other times(most time) she doesn't. If not salt tabs I want her to drink
bullion soup throughout the day. But I need documentation of the increased
benefits to her for her condition.
As for the raising of the head of her bed......the dr. only ordered 2". The
Home found a couple of 3 wheeled rollers, the kind you might use to move
furniture. They're about 3/4". I feel like banging my head against a wall.
I did something nice for myself today, something I should of done about 3
weeks ago... but still might work. I went out and cut scion branches off my
cortland apple tree for grafting this spring. I have a lot of volunteer
flowering crab trees that I transplanted along the field. I have over 200
transplant trees planted so far. I just hate mowing them down.(most are very
small) Hopefully I will have a lot of cortland apple trees in the future.
Mary Ann-

Re: [MSA] Difficulty typing/John

2008-10-21 14:43:18

John,
Regarding typing becoming more difficult...My father
is to the point that it's impossible for him to type.
He has very little use of his right hand now. Several
months ago he started using Via Voice to type. It's an
amazing program. Have you ever tried it?

Re: [MSA] Michael J. Fox and PD

2008-10-21 10:24:05

Are any of the support groups aware of any other celebrity that might have
MSA? We could really use a spokesperson like M.J. Fox! It's too bad.
Tricia Jensen
pajensen@...

Fw: Thought you guys might find this interesting.....

2008-10-21 08:52:14

Took this off the PSP Listserv..... As u may no MSA is commonly
misdiagnosed as PSP.
This appeared in the Austin Statesman today....My mom says there are several
pictures, which you cannot view online. It is emotional for me to read, but
I thought many of you would find it interesting. Most of the article is
accurate, however their are only 4 children all together, 3 girls (I am the
oldest daughter) and 1 son. I am so proud of my father, my mom, and my
sister, and grateful that she is in a position to serve my dad.
Alisa
Here is the link:
http://www.austin360.com/statesman/editions/today/life_entertainment_1.html
Or, for those without web access...the text is below:
Tuesday, March 20
As Sen.Tom Haywood battles Parkinson's disease, daughter Denise is by his
side
Story by Claudia Grisales
American-Statesman Staff
Tuesday, March 20, 2001
Denise Haywood sits at the edge of her seat near the Senate floor with her
hands clasped in a prayerlike pose, a worried expression on her face and her
eyes transfixed on her father. On this day, Sen. Tom Haywood, R-Wichita
Falls, is introducing three of his bills for debate on the Senate floor.
As one of only 31 state senators, Haywood holds a powerful position. But he
has a form of Parkinson's disease, and the things most people take for
granted -- the power to speak clearly, turn a page or start on a walk --
don't come easy for him.
"His first step is hard," Denise says of her father. "Once he gets that
first step, he can keep going."
Denise, 37, and her father, a senator since 1995, are familiar figures
walking through the hallways of a Capitol congested with legislators,
lobbyists and others partaking in the latest round of lawmaking.
Each day of the session she is there, supporting his back as he climbs
stairs, crouching next to him in a committee hearing, or writing notes on
the Senate floor.
"I tell people I play follow the leader," Denise says. "I'm just goin'
around wherever he goes."
Her father, she notes, disagrees: "When I tell people that, Dad always says,
`I believe I always play follow the leader.' "
During floor action, she watches from a distance in case she needs to come
over to help. Haywood isn't able to keep his eyes open, so he has tape
placed above them to help. When that doesn't work, Denise gently pushes his
eyelids open.
Denise decided to be by her father's side throughout the five-month
legislative session as Haywood's condition progressively weakened his
ability to move around. Soon his simplest movements became a chore. He can
no longer drive or write much beyond a signature.
"For me it means everything," Haywood says of his daughter's devotion. "For
my constituents, it means I am able to continue serving them."
Haywood was diagnosed with Progressive Supranuclear Palsy, an incurable
Parkinson's-related disease, during a bid for the Texas Senate in 1993.
Symptoms of PSP, a rare degenerative brain disorder, include difficulty
keeping balance. PSP attacks brain cells that control balance and eye
movements as well as some mental and motor functions. It only affects about
one out of 100,000 people.
British comic actor Dudley Moore, who has PSP, has tried to raise awareness
about the disease. Most recently, he deflected rumors that people with PSP
can't continue working by pointing to a recent music CD he put together.
And Haywood, 61, has continued to work through his illness, pushing for a
day-care incentive act that gives companies tax breaks and legislation to
curb lawsuit abuse. As chairman of the Senate Subcommittee on Agriculture,
he is focused on a statewide agriculture policy.
Thoughtful and patient
Those closest to Denise consider her to be the perfect aide for her father.
Jennifer Ransom Rice, the senator's communication director and a close
friend of his daughter's, said Denise helps people relax when they are
around Haywood.
Ransom Rice said Denise will often make jokes when people are nervous around
her father, and she teases them when they mistake him for being deaf because
his condition slows his speech.
Pat Haywood, Denise's mom, said it takes compassion and patience for Denise
to spend day in and day out at the Capitol.
This session, Denise bought a little mirror to place in front of her father
during committee meetings so she can watch his eyes as she sits behind him.
"She amazes me," Pat Haywood said. "She is always doing thoughtful things."
Denise said it was an obvious choice to attend the session with her father
because she doesn't have children or career demands competing for her
attention. Before the legislative grind made its way into Denise's life, she
worked different jobs in business and tried a stint in college, none of it
holding her attention too long.
"My dad said my grade point average was WP -- withdrawal passing," Denise
says, laughing. "He just says the most hysterical things."
Undeterred by disease
Haywood, born and raised in the Dallas area, was a physics professor and
businessman before he made his bid for a seat in the state House in 1990.
After he lost that race, he ran for a Senate seat. But during that race,
Haywood faced a different sort of opponent: signals that something was wrong
with his health.
It started with the absence of a smile, Haywood said. During that
hard-fought election in 1992 against Democrat Steve Carriker, Haywood
couldn't look happy, which was caused by loss of muscle control.
He lost the race by a slim margin and was diagnosed with a form of
Parkinson's the following year. In 1994, redistricting lawsuits forced a new
race, so Haywood ran again. The third time was the charm. Haywood talked
openly about his disease in his rematch with Carriker. Despite editorials
that raised concerns about Haywood's health, he won.
But it wasn't until the 1999 session that Haywood's illness progressed to
the point where he needed help from his daughter.
Today, Haywood speaks lightheartedly about the disease: "Life is kinda the
pits when you have Parkinson's."
Though his health still made the front page of the Wichita Falls paper
during Haywood's 1998 re-election, colleagues in the Legislature say his
illness should never have been a campaign issue.
"Whatever illness he has that may slow him down, his stubborn tenacity gets
him where he needs to be both figuratively and literally," said Rep. David
Farabee, D-Wichita Falls. "You don't always have to agree with his political
philosophy to see that."
Denise knows that firsthand. Her ideals are a sharp contrast to her father's
traditional family values.
Among other things this session, Haywood is sponsoring a covenant marriage
bill that would hold marriages to stricter requirements before a divorce
could be granted. The bill passed through the Senate last session but failed
in the House.
"It cracks me up," Denise says of her father's bill. Marriage, she adds, is
just something she doesn't think about, although she's in a 17-year
relationship with her live-in boyfriend.
Sassy style
Denise's attitude toward marriage isn't the only way she bucks the status
quo. Denise's mother says it's in her daughter's nature to be a
nonconformist. Pat Haywood points to her daughter's edgy fashion sense as an
example. Her brightly colored outfits and daring shoes are a sharp contrast
to the staid hues of the Capitol.
On the day Haywood introduced his three bills, Denise wore a fiery colored
blouse with see-through lines.
"I don't want to look professional because I don't want to be professional,"
she says.
Denise says committing herself to her father's career has been a sacrifice,
especially for the time away from her boyfriend back in Wichita Falls, but
believes anyone would make a similar choice. She said her four sisters and
one brother, who are all parents, do more than enough back home.
And when Tom Haywood gripped his daughter's hand tighter to begin his walks
through the halls of the Capitol, it was all Denise needed to confirm her
decision to be constantly by his side, she says.
Denise said the most gratifying part of every day is seeing her father's
colleagues treat him with respect.
"I wish his health was better," Denise says. "But he's living his dream.
There's not much more to wish for beyond that."
You may contact Claudia Grisales at 445-3673 or at cgrisales@....

Re: [MSA] bladder retention

2008-10-20 21:40:39

Jerry,
Dr. Jankovic told us that bladder problems, sexual
dysfunction and sleep disorders are the *very*
earliest symptoms of MSA, sometimes preceding dx by as
much as 15 years. My father had bladder problems (and
saw numerous specialists for them) for at least 8,
maybe 10, years before being dx with Parkinson's and
later MSA. My father's urologists had never heard of
MSA, either. He even went to Mayo to see if they could
treat the bladder problems. They never suspected MSA
at that time. That's when he had the prostate surgery.
Melanie in OK

bladder retention-

2008-10-20 18:07:57

Jerry, One of the first problems I had was bladder .There is no pill to fix
it, what you are doing is all you can do to emty it.I have been to mayo,
doctors and no one can help .I had all tests

Re: [MSA] Wscript.KakWorm

2008-10-20 11:54:25

Greetings Bill!
You are correct that it's very important to update software on a regular
basis. However, since I use corporate supplied hardware and software,
things like this sometimes slip through. "Really, we don't want to update
the software since we will ship out a new system with updated software any
day now ... " That was several month ago. You know the story.
Oh well. I now have the updated software but not the free time. I should
be able to do that in the next couple of weeks. But I will probably be
'down' for a couple of days while I am updating the software.
Regards,
=jbf=
John B. Fisher

: Vera's wonderful day-Jane&gt;Vera

2008-10-20 05:08:12

You certainly are! What a sacrifice, eating that pie, just to help Fred.
And the even harder part...giving away the other goodies!!
Jane

Re: bladder retention-

2008-10-19 19:17:39

Jerry:
I don't know about the other's here on the group, but one of the
first things Fred had problems with was the bladder retention, he'd
be in the bathroom ever few minutes and hardly do anything. His
doctor put him on flomax to help with that. There are some other
kinds of meds out there that may also help your brother, when all the
test come back.
Take Care
Vera

MSA &amp; OPCA

2008-10-19 18:21:31

Greetings Jeanie!
You wondered:
Actually, all that can be stated is that no one else in the family has a
similar disorder. Unfortunately it is possible (thought extremely unlikely
and VERY rare) that his case is a spontaneous mutation that will be passed
to children. Again, this is EXTREMELY unlikely. But because it is
possible, no competent doctors would put it in writing that it won't happen.
But if you were going to bet on your children getting this ... then bet
against it! It is VERY, VERY unlikely that Sporadic OPCA would be passed
along to the children. That is, of course, good news for all of us.
And, of course, if Dr Gilman thinks this is MSA rather than 'just' Sporadic
OPCA, then studies have shown no genetic links (even to children).
Hope that helps.
Regards,
=jbf=
John B. Fisher

Re: bladder retention

2008-10-19 08:17:51

Jerry,
When and how severely the bladder function is affected in MSA is a
function of which areas of the brain have been affected, not
necessarily how far the disease has progressed. Pam Bower has a
great analogy to describe this - the neopolitan (chocolate, vanilla
and strawberry) ice cream analogy. Sometimes when you run a scoop
through this type of ice cream you get more of one flavor, but you
always get some of all three. Depending on how MSA affects the
brain, symptoms may be more autonomic (Shy-Drager), balance (OPCA) or
Parkinsonian (SND) but everyone with MSA has some of all of these
symptoms. As the disease progresses, most people end up with all
three more equally (kind of like eating the whole carton of ice
cream ;-) The bladder function issue is autonomic, and as I recall,
your brother has other autonomic symptoms, so I'm not surprised this
is happening at this point in the illness.
It's good that the urologist is willing to listen and learn.
Hopefully the catheter will provide some relief.
Carol & Rob, happy it's the first day of spring and the snow is
melting, in Lexington, MA

Lupus

2008-10-19 08:02:27

Dear List,
Do any MSA patients on this list have relatives with lupus?
A family member has a preliminary diagnosis of connective tissue
disease/lupus and I was wondering if there is a hereditary
connection?
Marie

bladder retention

2008-10-19 05:08:35

My brother had an appointment with the urologist yesterday
and I understand that the doc inserted a catheter which he
will wear for a week and then be re-evaluated. I guess the
bladder was significantly enlarged due to the retention and
he is going to have another ultrasound and cystoscope to
check on the condition of the bladder (and kidneys) once
its had time to return to normal.
I talked to my mother last evening and she was feeling pretty
concerned that the bladder function means his condition has
progressed significantly, but I told her I seem to have the
impression from what I've seen posted that the bladder
function problems can arise early in the disease process.
Is that correct?
As someone suggested in a previous posting, the urologist
had never heard of MSA (and although the neuro told Larry she
would inform the urologist about his condition, I understand
that the urologist had to have Larry explain it to him.) I guess
he did say he would do some research on MSA which
makes me feel better.
Jerry Cash

Re: [MSA] join up BOB/Jean

2008-10-18 15:49:46

Jean: Thanks for your reply..I was able to get on afterall. Bob

Re: Vera_Kathy

2008-10-18 06:50:34

Kathy:
Are you really sure I'm an angel? Right now it is taking everything
to be a nice person. I'm in my mid 50s and going into that wonder
stage us women go into and somedays I just feel like going grrrrrr.
You know.
Can't help myself.
Bare with me
Vera

RE: Vera's wonderful day-Jane

2008-10-18 05:27:33

Hi jane
Tried to write this once to you, but got kicked off line, so that
note is lost out there in space somewhere.
I was really good I gave the lemon cake, the bag full of popcorn
balls and the carrot cakes away, the chocolate pie I just couldn't
bring myself to get rid of and I know that Fred shoudn;t have it, so
I did what every good wife would do, I ate it (well not the whole
thing). Now Fred doesn't have to worry about putting on anymore
weight.
Aren't I a good wife?
Vera

Re:heavy legs &amp; mri-Mary

2008-10-17 22:01:57

Hi Mary:
Well I think I've gotten Fred into taking the pro-amatine now. The
doctor wants him to take it three times a day. I've been giving him
it at 7am,11am & the last at 4pm. I hope this is right. It seems to
be helping with the b/p drop, so Fred's feels that it maybe it
working for him. (Thank you God) For just a little pill , it's sure
been one big fight to get him to take it.
He still get's pretty weak in the late afternoon, until he goes to
bed. Also getting to where he doesn't want to go to P/T.Thank you for
letting me know how Warren is doing on the pro-amatine.
Hugs Vera
P.S Seen your grandson lately?

RE:Anne's surgery

2008-10-17 18:15:21

Anne:
You know that all my love and prayers go to you at this time. I know
that you are a fighter and will go against all the odd's and win. Who
ever said big things come out of small packages had to have you in
mind.
With all my prayer
Vera

RE:Thank you Sheila

2008-10-17 09:31:01

Sheila:
No! I didn't send me a card, but I did luck out and found my
raspberry chocolate creamer, so I stocked up on it, for the times
that I want to do something nice for me. I think we all need to do
something nice for ourself once in awhile.
God Bless
Vera

RE: Hello -Bob

2008-10-17 02:11:52

Hello Bob:
Welcome to the group or should I say the family. We'd love to know
more about yourself. So please feel free to tell us about the meds
you are on now. How long you have had MSA and anything else you would
like us to know about you. I'm the caregiver to my husband Fred who
has been DX since 97 with PD and then MSA. We've been married 27
years, we have three kids, two boys and one girl and eight
grandkids.I found the group here last June or July while I was trying
to fine out more about Fred's illness. I came across so little about
it the first three years because I didn't have a pc. Now I have a
whole new world and alot of new friends. Really glad that you've been
able to fine this group.
Take Care
Vera

Re: [MSA] Cleveland Clinic

2008-10-16 20:42:48

Dearest Besty: My name is Becky Poast and I am from Cincinnati, Ohio. My
dearest husband, Mike, was diagnosed with this wretched disease at Cleveland
Clinic by Stanley Burns. Stan dx'd Mike just by watching him walk down the
hallway and of course many questions and then finally the tilt table test.
My Mike and I did the Clev. Clinic trip three times. My Mike died Sept. 30,
1999. He was dx'd in Oct. of 95. Mike had been a very healthly, athletic,
active person until this happened. I, like you, wanted to know EVERYTHING
about the disease and had it not been for this web site, I would not have
prepared myself and my family for what did adventually happen. Knew I had to
sell our home of twenty years and get us into a first floor master condo and
get our third child graduated from high school. Mike was only with us for
six months after moving here, but he did love it and knew that we as a family
were going to be okay. My only advice to you is to not dwell on the negative
effects of this disease, but do what you are doing as far as "treating the
symtoms" of the disease. I remember so well those words coming out of
Stanley Burns and being so angry that he did not REALLY explain to me and
Mike what really was going to happen in our lives and that our whole future
was forever changed. Dr. B. and I had many conversations relating to that
after our completed diagnoses and he was upset with me that I had gone ahead
and done my own research to see what our future held. My point to you,
Betsy, is to ready yourself as far as insurance, all money situations, wills
etc. Do not mean to scare you cuz many live more years than my precious
husband of 30 years did. I use to be very active in this group, but have not
been so much cuz after five years, one needs to have a "break". Please do
not hesitate to ask any and all questions. Mike and I were through it all
and I know that I have knowledge that may not be found in books. How old are
you and your sweetheart? Do you have children and family nearby to help?
Will look forward to hearing from you. hugs, becky from cincy

Re: [MSA] Sense of Humor

2008-10-16 18:18:06

Amen!!

Re: [MSA] email

2008-10-16 07:17:36

Hi everyone: Bob is home from the hospital. Hopefully the lift
chair will be a big help for him. We expect delivery in about a week. I
had a problem with sending & receiving individual email from the group
for a couple of days, but it has been resolved. Thanks to everyone for
their good wishes! Regards. jerrie

Re: [MSA] Cars and wind - Judy&gt;Bill

2008-10-16 06:44:18

Hi Bill,
Can't dump the little Honda, she's a beauty, little Grandma's car. 1993
Accord, paid for, gets great gas mileage, only has 34,000 miles, and is my
work car since I have to drive all the way down to the south end of the
island to work. I do think I'll take the "over the road" way to work
tomorrow instead of the parkway with the bridge.
Take Care, tell Charlotte we said "Hey"
Judy

Cleveland Clinic

2008-10-15 18:58:04

I introduced myself a few weeks ago.My husband recently has been
diagnosed with MSA.We had an appointment at the Cleveland Clinic last
week for a syncope test.Charlie tested low on his blood pressure and
they did a follow up test after on for autonomic nervous system
involvement.I have read a lot on this disease and do understand as
much as possible about the blood pressure and autonomic involvement.On
Friday they did a lumbar puncture.Wondering if any of you could tell
me what they determine with the spinal fluid? He has had problems with
his blood pressure that have been ongoing here the last month or so.I
did read where one posted that gatoraide might help do to the sodium
amount.We are trying that, so who knows at this point.I was also
reading about a wedge that would elevate the head of our bed.Is this
available the the medical supply network? I purchased a four wheeled
walker last month and that has been a great help especially with
spring coming and will help with his mobility out doors.I try not to
make more problems than we have at the time but I am the type of
person that needs to be aware of all that I may need to watch and
prepare for.This disease is so complicated and different with everyone
in it's nature.We are to meet with Dr.Patrick Sweeney next month for
a follow-up and hear all that he evaluates Charlie.We saw Dr.Stanley
Burns in Jan. of this year.Our visit was the last day he worked at the
clinic.This was like starting all over again, like a hundred times
before.Thank you for your patience and I pray for each of you and your
families as I keep up best I can in the postings.Prayers for strength
and guidence for you all..... Betsy

Re: [MSA] Cars and wind - Judy

2008-10-15 12:53:03

Judy,

:o) Dump the
[INLINE]

And get a real car :o)

[INLINE]

Take care, Bill and Charlotte

===============================

Re: [MSA] Being cold, forgetful, further concerns

2008-10-15 08:06:26

Barb in Illinois,
It does not sound to me as if Chuck should be driving. MSA and driving do not
agreeat a certain time, and short term memory loss could cause an accident. Is
there anyone else that could drive you? Dehydration could cause the short term
memory loss. Can you get him to a doctor before Friday to check him out?
Take care, Bill and Charlotte
=================

Re: [MSA] Hello from Bob

2008-10-15 07:56:00

Bob,
Often with MSA, drooling is a sign of swallowing difficulties. I would see my
doctor and ask about a swallowing study with a speech therapist watching it.
Speech therapy can help greatly with early swallowing problems.
Take care, Bill and Charlotte (Charlotte was diagnosed as PD in 1990 and MSA in
1995)
=================

Re: [MSA] Bob / drooling

2008-10-15 01:54:41

My husband John takes Artane, 5 mg. twice a day. He does pretty good with it
but do have to remind him to swallow several time a day. Hope this helps
you. Good luck....John and Donna in Abilene

Re: [MSA] I'm always cold too!

2008-10-14 16:45:22

Meg,
My dad has MSA and has some of the same problems with attention,
concentration and memory. It has gotten much worse in the last year but
initially he couldn't remember simple things like telling time. He can no
longer read, he just looks at print and is unable to make any sense of it.
When asked a preference, for example: would you like to sit in your chair or
lie on the couch? he can't decide. We now ask if he wants to sit in the
chair and he will reply with yes or no.
I'm sorry that you are having some of these problems, I wasn't sure if it was
unique to dad or if others experienced them as well. He doesn't get cold
though, mostly comfortable at reasonable temperatures.
Rin Wroblewski

Thanks for help

2008-10-14 13:36:15

I read all you emails and do not write as I am very illiterate of this
machine, but my Son set it up so I can read and also when I needed help he
set it up so I could email to all of you the same as I do to my kids--and
you all were a lifesaver for me. I had been trying to get the end piece to
my husband's feeding tube, and had not had any luck, and after your answers,
I knew to ask for the precise part I needed, and got it today!!!! Thanks so
much, I was worrying myself to death!!!! You all are just great-Maryann

I'm always cold too!

2008-10-14 09:05:22

Earl, In response to your posting about your wife, I too am very cold all the
time. I keep the house about 72 degrees and I am constantly shivering. My hands
and face feel cold to other people's touch. There are times I shiver so much
that it actually hurts. i don't have an infection that I am aware of. As a
matter of fact my doctor keeps a close eye on my blood work just to make sure an
infection isn't there somewhere. I walk around the house in at least three
layers of clothes on my bodice. At night is when I feel extra cold. As far as
memory goes, not always but at times I forget things that have just happened.
This could be for alot of reasons. But what concerns me is the way my mind gets
confused. It's like I can no longer take in more than one activity at a time. If
more than one thing is happening at the same time, I get so confused I can't
think. My 6th grade son asked me help with his Math a few months ago. It was
long addition problems and I couldn't carry over the s!
implest numbers to add them. I got so confused. If i hear a loud noice, I seem
to start shaking and feel like I get goosebumps, but I don't because I don't get
goosebumps anymore. I just feel the feeling. An adrenaline surge kind of. If
someone is talking to me, I have to give them my utmost attention or I can't
concentrate on what they are saying. I also have found that at times I say the
wrong words when I am saying something. I am a very intelligent woman and this
is a major concern of mine. i haven't talked to anyone about this because I am
afraid people will think I am stupid or that maybe something else might be wrong
with me. I am so glad you brought this up. Meg in Nebraska

Re: [MSA] join up BOB

2008-10-13 20:57:34

hi bob. welcome to the group. i'm assuming
you're getting this because i received both
emails you sent.
i can't answer your drooling question, but
there is no doubt that someone on the list
will respond. also, pam bower will clue you
in on how to access all the past emails where
many of your "new" questions may already
have been answered. i believe pam is
on vacation, or away from the list briefly, but
she has a wealth of info and links, as does
bill and charlotte.....bill is the caregiver; charlotte
is his wife and has msa.
hang in there.....your emails should be coming!
regards,
kaye

Re: [MSA] Digest Number 615

2008-10-13 15:08:57

I want to thank each and everyone of you for all I have learned. My brother
has Shydragers. I spent 4 days with him so his wife could have a break. I
commend her for what she contends with everyday of the world. Also what is
ahead. I intend to help her as much as possible. God Bless all of the
caretakers. They need it!!!!! Three of those days were pretty good. But 1
day was sever pain for him. His legs hurt him terribly.

Re: Being cold, forgetful, further concerns

2008-10-13 12:59:08

Barbara,
Is Chuck having any abdominal pain? Although it seems backwards,
sometimes diarrhea is a sign of an intestinal blockage. What happens
in the stool leaks around the blockage. This could be why he seems
to have a slight fever, too. Has he been constipated resently? When
he has diarrhea, is it a small amout or a large amount? A small
amount each time might suggest a blockage.
Hopefully that is not the case, but monitor it carefully.
In terms of your surgery, is there anyone who can help you out while
you recover? Could somemone else drive you? It's a real dilemna.
Carol & Rob

MSA &amp; OPCA

2008-10-13 02:44:14

Jerry,
The sleep disturbances you refer to are called a REM behavior
disorder. They can and do occur in healthy people, but nearly
everyone with MSA has them. (Of course, as with everything with MSA
patients, there are exception.)
My husband's sleep neurologist calls him her poster child for REM
behavior disorder. Apparently she has saved the EEG from his sleep
studies because he's such a text book case. He now takes klonopin to
control the problem, but before it was well managed he was quite
something at night. He once tried to strangle me, and lept/fell out
of bed on several occasions, resulting in bumps and bruises but no
borken bones. The ultimate was when he got out of bed, walked down a
full flight of stairs, out the front door and down the driveway. He
said he heard me calling him, but in his dream I was possessed by
aliens, so he was ignoring me. Talk about an imagination! The punch
line is that he woke up in the middle of the street at 2 AM, feeling
quite chilly - he sleeps in the nude. Needless to say, we contacted
the doctor, who adjusted his medication!
Interestingly, as his MSA has developed his REM behavior disorder is
a bit better. He also has sleep apnea, which in his case seems to be
due only in part to MSA, as other family members seem to have it too.
Well, all I can say is that it pays to have a sense of humor with
this disease.
Carol & Rob
Lexington, MA

Being cold, forgetful, further concerns

2008-10-12 20:52:59

Earl and all,
My husband, Chuck, gets cold most of the time, while I am sweating. At
night he starts out with cold feet and legs and then gets the chills and
shakes all over. He has three blankets and I have a sheet.
He is also forgetful now. Today I went to my orthopedic doctor to discuss
having a screw removed from my elbow, and on the way back I picked up
some groceries. Chuck forgot I was going 25 miles to see a Dr, and asked
what took me so long to get groceries.
Thus I am in a terrible funk about whether I should be having this minor
surgery on Friday. Will he be able to drive me? Will he pass out in the
waiting room? How am I going to take care of him with one arm in a sling
for two weeks (I just found out this little goodie)? Is he getting a
fever and that's why he's out of it? Should I cancel the surgery? I want
that screw out really a lot.
His temp's up 0.7 pts (97.9). What do you think, Bill? He's probably
dehydrated because he's had diarrhea as much as 12 times a day for the
last three days. I'm trying to pump him with water, but it would be
better if he had an IV. What to do, what to do.
Barbara turning in the wind in Illinois

join up

2008-10-12 19:17:45

i want to be on the list for msa mail.i can't seem to do it.please help
me to sign up. Thank you

Re: [MSA] (MSA) - email test

2008-10-12 15:51:48

it came thru to me ..
s

Fw: Gift of the Day

2008-10-12 02:20:25

Interesting Thoughts from Andy Rooney

If you will take the time to read these, I promise you'll come away with an

enlightened perspective. The subjects covered affect us all on a daily

basis!

Enjoy........

I've learned....That the best classroom in the world is at the feet of an

elderly person.

I've learned....That when you're in love, it shows.

I've learned....That just one person saying to me, "You've made my day!"

makes my day.

I've learned....That having a child fall asleep in your arms is one of the

most peaceful feelings in the world.

I've learned....That being kind is more important than being right.

I've learned....That you should never say no to a gift from a child.

I've learned....That I can always pray for someone when I don't have the

strength to help him in some other way.

I've learned....That no matter how serious your life requires you to be,

everyone needs a friend to act goofy with.

I've learned...That sometimes all a person needs is a hand to hold and a

heart to understand.

I've learned....That simple walks with my father around the block on summer

nights when I was a child did wonders for me as an adult.

I've learned....That life is like a roll of toilet paper. The closer it gets

to the end, the faster it goes.

I've learned....That we should be glad God doesn't give us everything we ask

for.

I've learned....That money doesn't buy class.

I've learned....That it's those small daily happenings that make life so

spectacular.

I've learned....That under everyone's hard shell is someone who wants to be

appreciated and loved.

I've learned....That the Lord didn't do it all in one day. What makes me

think I can?

I've learned....That to ignore the facts does not change the facts.

I've learned....That when you plan to get even with someone, you are only

letting that person continue to hurt you.

I've learned....That love, not time, heals all wounds.

I've learned....That the easiest way for me to grow as a person is to

surround myself with people smarter than I am.

I've learned....That everyone you meet deserves to be greeted with a smile.

I've learned....That there's nothing sweeter than sleeping with your babies

and feeling their breath on your cheeks.

I've learned....That no one is perfect until you fall in love with them.

I've learned....That life is tough, but I'm tougher.

I've learned....That opportunities are never lost; someone will take the

ones

you miss.

I've learned....That when you harbor bitterness, happiness will dock

elsewhere.

I've learned....That I wish I could have told my Mom that I love her one

more

time before she passed away.

I've learned....That one should keep his words both soft and tender, because

tomorrow he may have to eat them.

I've learned....That a smile is an inexpensive way to improve your looks.

I've learned....That I can't choose how I feel, but I can choose what I do

about it.

I've learned....That when your newly born grandchild holds your little

finger

in his little fist, that you're hooked for life.

I've learned....That everyone wants to live on top of the mountain, but all

the happiness and growth occurs while you're climbing it.

I've learned ...That it is best to give advice in only two circumstances;

when it is requested and when it is a life threatening situation.

I've learned....That the less time I have to work with, the more things I

get

done.

Re: [MSA] being cold /Donna

2008-10-11 19:15:57

Could John have an infection? I recall reading several
emails (many from Bill, I think) saying that a rapid
decline is often due to an infection. Just a thought.
Melanie in OK

Michael J. Fox and PD

2008-10-11 17:36:43

Did anyone else watch the program on Michael J. Fox this weekend?
I was struck by how much Fox is doing to bring awareness and to
support research on Parkinsons. I think his work should give hope and
encouragement to all movement disorder patients.
Although he apparently claims not to have Shy Drager now, it's
a pity Johnny Cash hasn't used his celebrity status to make the
public more aware of Shy Drager the way Mcihael Fox has done
for Parkinsons..
On the contrary, the only thing I associate with Johnny Cash
about his Shy Drager diagnosis is his public denial of the
illness and the unfortunate and calous comment he made when
he said "my doctor said if I had it I'd be dead by now." That
was one of the first articles we found on the internet when we
begain trying to find information about Shy Drager after my
brother's diagnosis.
Jerry Cash

Re: [MSA] being cold /Earl

2008-10-11 06:35:31

My John is cold most of the time and he is getting more forgetful ever week.
John fell this morning but wasn't hurt except for his pride. When I go to
the bathroom, I always tell him to stay where he is and what I am doing.
Poor baby can't remember and tries to get up, this time he made it up but
didn't get far. He has really gotten worse since Friday and we've had a bad
week-end. Nelda (aide) just got through saying see can tell the difference
since she was here Friday morning. Oh how we hate this game, why can't we
just pick up our marbles and go home !!!!!!!!!!!
I feel a good cry coming on...haven't had one in months.
Earl ...not sure why this happens but think it is due to low B/P and poor
circulation, at least in John's case.
I hope your wife does ok and our prayers are with you.
Donna in Abilene

MSA &amp; OPCA

2008-10-11 01:26:26

For those who have been posting questions and comments about
a history of head trauma and it's connection (if any) as a
factor in causing MSA, I can report that I don't ever recall
my brother (who was diagnosed as MSA 02/01) having had a
trauma or other injury to the head -- either as a child or
an adult. The only possible injury I can recall is that
he was hit broad-side by another car about 15 years ago
and I suppose he could have hit his head then.
As far as symptoms beginning a decade or so before diagnosis,
I can tell you that my sister-in-law says Larry began
having sleep disturbances at least ten to fifteen years ago.
He vocalizes in his sleep and acts out his dreams. The
neurologist associated this with the MSA and explained that
the area of the brain that "disconnects" when most of us sleep
and/or dream does not sleep in Larry's case. It remains active
and causes him to act out his dreams as if they were reality.
Fortunately, he does not get out of bed, however,the neuro
says some patients actually get up from bed and literally
act out their dreams. She advised locking doors, disconnecting
appliances, etc. if this begins to happen.
The point is if this sleep disturbance is a feature of MSA,
then yes this MSA symptom did apparently begin over a decade
ago for Larry. On the other hand, my mother will tell you
that my father had similar sleep disturbances (especially the
vocalizing) all of his married life and he did not have
any other symptoms of MSA at the time of his death in 1990
from lung cancer. He died at the age of 64.
Jerry Cash

John Cummings

2008-10-10 19:10:01

How beautiful! Tell your wife that she is just a beautiful person.
Ann from Soddy,TN, USA

(MSA) - email test

2008-10-10 18:30:31

Hi everyone..this is a test to see if this goes thru. Since yesterday
i've been having a problem sending & receiving my emails. i've been

Greeting/VerA

2008-10-10 14:45:25

THANKS!!!
Ann from Soddy, TN

Re: [MSA] Hi everyone/I'm confused...

2008-10-10 05:44:18

I read the message in question, but it didn't have any
attachments. Did I get the virus?
Melanie in OK

Re: [MSA] Dr. Jonathan H. Pincus

2008-10-10 00:02:12

Jim,
Thanks for the update on Dr. Pincus. We can add our note that he was great with
Charlotte when we saw him about 1993-1994 and was the first to suggest OPCA. He
is also great at adjusting medicines to suit the symptoms. If anyone in the DC
area is a veteran, I would strongly suggest you try to see him.
Presently we do see Dr. Linda Sigmund who is on his list and is also great. She
is also much closer to us (especially time wise).
Take care, Bill and Charlotte

Re: [MSA] Scientists Gain New Understanding of CNS Stem Cells: Findings May Lead to Improved Treatment for Parkinson's Disease, Other Disorders

2008-10-09 21:45:50

Jim,

This shows that stopping any stem cell research is bad more than ever. McKay is the person who first got the pluripotent cells to grow into dopamine producing neurons. The article still does not address that issue.

Researchers need to be able to look at the differences between the pluripotent cells and adult stem cells in order to determine how to make the adult cells do what they want. For the time being they still need to understand those differences. Maybe from using the pluripotent cells, they will learn to use only adult cells in the future. To me this just underlines the need for using all available sources of research and not to ban any of them.

Take care, Bill and Charlotte

==========================================

Scientists Gain New Understanding of CNS Stem Cells: Findings May Lead to Improved Treatment for Parkinson's Disease, Other Disorders

2008-10-09 12:01:24

James Stark(jark8@...) has sent you an article from The National Institute of Neurological Disorders and Stroke.

http://ninds.nih.gov/news_and_events/pressrelease__improved_treatment_parkinson_040397.htm

Transplanted Neural Stem Cells Migrate Throughout the Abnormal Brain, Reduce Disease Symptoms

2008-10-09 11:04:35

James Stark(jark8@...) has sent you an article from The National Institute of Neurological Disorders and Stroke.

http://ninds.nih.gov/news_and_events/pressrelease_neural_stem_cells_060799.htm

Dr. Jonathan H. Pincus

2008-10-08 21:05:48

We have just received a note from Dr. Jonathan H. Pincus of Georgetown
University Hospital. He is taking the position of head of the department of
neurology at the VA Hospital in DC. He will continue to see patients at
Georgetown on Thursday afternoons.
Dr. Pincus is a well known movement disorder specialist. He indicates that
those who are VA eligible may make an appointment to see him at the VA
hospital in DC. He is having a Wednesday afternoon clinic at the VA
Hospital for those with movement disorders.
Dr. Pincus mentions the following doctors in the Washington DC area as being
experienced with Parkinsons and movement disorders
Dr. Pamela Blake of Georgetown U
Dr. Linda Sigmund at Fairfax
Dr. Steven REich at Hopkins
Dr. William Weiner at the U of Maryland
If someone would like to contact Dr. Pincus at the VA Hospital, we do have
the information on how to do so.
Peg and Jim from Guam
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Turning Blood into Brain: New Studies Suggest Bone Marrow Stem Cells Can Develop into Neurons in Living Animals

2008-10-08 18:30:56

James D. Stark Jr.(jark8@...) has sent you an article from The National Institute of Neurological Disorders and Stroke.

Personal Message:

Hi All,
I got this from the NIH site and thought some of you might be interested.
God Bless,
Jim Stark

http://ninds.nih.gov/news_and_events/pressrelease_bloodtobrain_113000.htm

Re: [MSA] msa emails

2008-10-08 15:42:24

Jerrie,
Go to this website and sign in with your Password.

msa emails

2008-10-08 07:04:23

I was notified that my emails were not able to be delivered,nor was i able to

Re: [MSA] Hi everyone

2008-10-07 23:43:20

this came up as an INFECTED FILE from Mcaffee and 2 others ... delete

WARNING .. LISA BUSHNELL HI EVERYONE MSG

2008-10-07 18:37:18

has a virus ... according to Mcafee and 2 other virus catchers

DELETE

Re: [MSA] Anne's surgery To Kathy

2008-10-07 11:04:25

you. I have been away from the computer for a couple of days and I'm
catching up. Take care and we will all be waiting to hear from you.
Thank you so much. I appreciate all the prayers being said. How can
I fail!!
I will let all know when a definite date is given.
Much love from Anne

RE: [MSA] does anyone

2008-10-07 10:52:30

Sheila, I didn't see a spot to put Anne's name, either. Let me know if you
do. (I'll see if I can f find the message) Debbie
-

does anyone

2008-10-06 19:55:54

still have the original msg Ann sent over that competition in Australia ....
I took that msg on someone else's computer .. and now can't access it ....
Ann sent me the 'address' but it doesn't let me give her as a referral .. so
I haven't signed in yet ..
am waiting to see if anyone can forward me the original msg.
thx
sheila

Re: [MSA] Anne's surgery To Tricia

2008-10-06 14:25:45

Dear Tricia
Thank you so much. The prayers are so welcome. I need some help
from above I know. I wont be deciding the option, the surgeon will.
I just need someone there to steady his hands!!!! :o)
Much love and thanks from Anne

Re: [MSA] Anne's surgery To Sherilyn

2008-10-06 10:21:19

luck
Dear Sherilyn
Thank you so much. The prayers offered make me very happy and give
me more confidence.:o)
I too hope I will be back with you all. I have missed you all
dreadfully.
Much love from Anne

Re: [MSA] A Perspestive

2008-10-06 06:01:13

Thanks for sharing....Ya'll are a great couple.
Prayers with you....Donna/Abilene

Re: [MSA] Sheets/Bill and Charlotte

2008-10-06 05:04:52

Thanks for the info on the sheets...Looks like I will have to visit Penny's
!!!
Glad you are feeling well enough to be back on line.
Take care you two...Donna/Abilene
PS.... couldn't get my e-card to work but am still trying...Thanks !!!!

Chat today - NOW

2008-10-05 13:15:41

Jm Stak and I are in Pam's AOL chatroom per instructions in yesterday's email
Bill

RE: [MSA] Being cold

2008-10-05 11:40:01

Earl, Sorry to hear Iris is having a bad day.
My mother Joyce (71, died 11/0) was all there mentally. However, she had
many days of confusion -- especially about things' whereabouts. The doctor
said this was the drugs. I think things like paperwork got overwhelming
after awhile.
Hope tomorrow is better. Debbie

Being cold

2008-10-05 10:25:56

To All:
My darling wife, Iris has had a bad day. Now she is freezing cold even
though
I keep the house at the right tempreture. Also very forget-full and
has hard time remembering things that she may have put somewhere.
Just wondering from someone out there'
Thank You
Earl

"Perspective" by John

2008-10-04 21:40:09

The thoughts and information offered by John and Patricia on their personal
experiences with MSA SND are appreciated. I am sure John's "perspective"
and Patricia's "My Shaking Palsy An attempt at understanding" will be
useful to many - if not all - of us. Thank you both very much for your
insights.
God be with you in your journey.
PS: Their sharing efforts certainly demonstrate the objectives of the Shy
Drager list.
Perry Sennewald 804-244-0018

MSA &amp; OPCA

2008-10-04 19:08:13

Dear Doug,
my husband was recently diagnosed with OPCA from Dr. Gilman at the Univ. of
MI. He diagnosed my husband in having the sporatic type, which he said was
not hereditary. There is no history of any type of movement disorders in
his family. So, I am assuming my children will not be effected since he
said it was not hereditary. Just wanted to agree with you on the difference
between sporatic and hereditary OPCA for those concerned. Thank you,
Jeanie

Anne surgery

2008-10-04 16:40:20

Thank you to all those that have sent such lovely messages both on
the group and privately. You cant know how much I appreciate it.
Please, please those that have offered money, no way would I accept
that. I Bless your hearts for offering though. Such kindness that
will never be forgotten. How Blessed I am to have such wonderful
friends. Your prayers and positive vibes are all I ask for, be it
humbly. They go such a long way in helping.
I suggested the competition because that way I can earn or win a
prize that I can sell to help with the bills. At the same time bring
pleasure to you with a fun site and possible winnings for you too.
Perhaps it was wrong of me to do this, I don't know. I thought it
worth a try. I would appreciate any of you that register at the
site. If not interested if you could just play one game then
unsubscribe if not interested that's fine. You don't need to
continue to play. Any that do I wish you luck with a good win.
So much love and hugs to all from Anne

Re: [MSA] Re:exercises-thanks Bill

2008-10-04 09:04:46

Bill,
Sorry for being so dense. Thank you for the sites. I will check them out
tonight. Hope you are feeling better from your flu. Linda

Vera's wonderful day!

2008-10-03 18:47:05

Oh, Vera! I guess when you have a crazy day like that, what else is there
to do but laugh--through tears of exhaustion and frustration! Hope you're
enjoying the cake, etc. After all, whatever you eat, Fred can't.
Jane

Re: [MSA] Anne's surgery

2008-10-03 13:08:21

bless you sweetie ....
could you send that l