Wiki articles

Hi Jack and Judy
I'm the other forester, and I too have a great interest in the
outdoors. Just what type of scooter do you have? Is balance a
problem? I am excited that there is a potential for some degree of
freedom in the woods.
Steve Crawford

Sylvia,
When did you write this? It only showed up on my computer in the last day or
so. Is your computer date off?
We pay nothing for gas, since we are totally electric (including heat through a
heat pump). Our electric bill was about $130 for last month (low for this time
of year). We have had winter electric bills as high as $190 and summer (air
conditioning) as high as $230 (US$).
How much does gasoline cost up there (and is it sold by the litre or English
gallon?) Then we have to convert the Canadian $ to the U.S. $. :o) We are
paying about $.56 (Canadian) per litre here for gasoline (according to the last
exchange rate I saw). I think the Aussie $ is running about the same as a
Canadian $ - usually about .70-.75 of a US $
Have fun with the math :o)
Take care, Bill and Charlotte (19 deg F here this morning and sunny).

Hi all,
One warning about motorized people movers. Many people with MSA may lose their
eye-hand coordination and control of the scooter. Charlotte tends to stop about
a foot after hitting something, as Wal-Mart can attest. I'll bet they have
re-thought their policy of putting an electric cart is each store since
Charlotte moved things around for them.
Just a warning, especially if you have the OPCA form of MSA. It may not be wise
to put out that much money for the motorized one. The money may be better spent
on a custom fitted manual chair. While Charlotte's new wheelchair helps a lot
with her posture, the tray we got last week REALLY helps with her eating. The
food is closer to her mouth and she can rest her arms ( :o) elbows) on the
tray itself. She looks like a race car driver with the harness and seat belt,
but it does keep her much more upright.
Take care, Bill and Charlotte

Pam, Bill, especially--I read all the links and wept. Compare my function
to Sisyphus or dung rolling beetles confusing activity with progress. Too
many variables requiring individual applications in these diseases and
collective brainstorming ideas are invaluable. THANKS TO ALL OF YOU! We
ain't down yet. Generator Tender LA Louise in Springhill where power and
water outages due to lightning and flood are weekly events.

Dear John, Forty years since I've heard such, little time to read the page,
but remembered career consultant friend (Italian) who used it (and me) to
match clients to jobs. We did color tests, handwriting analysis, ink blots,
meditation responses--to earn enough money to Go places and Do things. I
kinda remember that this is real life and fun. Composing and decomposing
are nature's order of things . We don't have to like the process.
Especially when faculties fail to function as expected. Husband Jan was
fortunate to be in scientific computing at NASA for 34 years. He loved it
and used numbers as normal people use language. Suffered a color test,
choosing greys, muddy yellows and navy blues. He's red/black color blind.
INTJ, too, stubborn and self centered macho German heritage and HARD to care
for. Help your wife use the computer so we can do horror and bitch and moan
sessions. PC's that is, that "waste" so much caregiving time. Homebound is
horrible. LA Louise where the deer pastures are greening with daffodils and
the myriad birds hustle north on the storm fronts.

Hi: Outdoorsy travel: Well, my husband was a forester so he also enjoys
the outdoors. It was very difficult to convince my husband, but I had a gal
come with a scooter to our house for him to try. We did by it and a van
with a swing lift so it could go anywhere. We have taken the scooter on
logging roads, parks, on ferries, airplane. We travelled by ferry to
Vancouver Island and then drove the length of the Island which is, I believe
around 350 - 400 miles long. Without the scooter your husband will not be
able to enjoy going very far. The first few times out are difficult and
then the freedom of going where one wants out weighs the "embarrasement" or
feeling of dependents, because of the added independents. My husband also
gardened from his scooter for several years. Now in his 4th year with the
scooter he is much more restrictive, but for several years he went
everywhere. Most of the parks have black top or gravel walk ways that make
it accessible with a scooter. The differance between a scooter and a WC is
the WC I would push and the scooter he drives where he wants to go. Good
luck on this project. It just takes some re-thinking. Hugs, Judy

Mary Ann,
Is your mom seeing a gastroenterologist about this? I can't remember if
you've said. She needs to consult one and ask about options. I imagine a
small dose of a muscle relaxer MAY help (I really don't know) or maybe
physcially stretching the esophagus (dilation). The second surgery is done
frequently and sometimes needs repeated after several months or years. The
GI doctor really needs to be the one to assess what options are the best for
your mom.
Rose

Please send me information about the e mail sent to Danielle on 2/ 11/ 02
about stem research.
send answer to evaangelina2001.com

Hi all;
I was searching the web for a mobile or transfer shower chair for Mom. She
needs one to use at the YMCA. They are tired of us taking there wheelchairs
into the shower and then they get rusty, even though the 2 they have are as
old as the hills. Anyway I found a site others might be interested in. It
has lots of suppliers, maybe some of you have already visited it.
http://www.neoforma.com/hm/ndNSAPI.nd/Home/pgHomeMain
Hope the weather is nice tomorrow, we are headed to Mpls with mother.
Mary Ann-

Greetings Louise!
Sorry for my delay in this response.
Whose brain did you get? Abby... Abby someone! Abby someone? Abby Normal,
I believe it was. ;-)
Louise, yes. This type of ataxia results from problems with the cerebellum,
which generally is associated with degeneration of the upper brainstem,
upper spinal cord and the cerebellum... Hence SpinoCerebellar Atrophy (or
Ataxia) ... SCA.
Yes, it does seem to be from different causes.
Oh, but when ALL else fails us, the LOVE you show him does not. LOVE never
truly fails. We might wonder why it is not returned. We may never have
love showered upon us by those we love. But LOVE never fails. You do more,
much more than you know by 'just' loving so fully.
Ha! Just go ask my wife, who gets to put up with me! ;-) Or perhaps my
kids. They'll be happy to let you know that I'm just another person. Full
of faults and foibles. But I do try to help others. It's my way of living
my discipleship. So, if something I say helps, then thank the Sender, not
the one sent.
I'm in the early stages of this, so I can take care of myself. (Though my
wife needs to drive me more and more, these days. Which is okay, since I
drive her crazy, more and more! ;-) I'm very fortunate to have such a
wonderful wife. She's a blessing to all those she meets.
I'm a Virgo. Probably of more interest is that I'm an INFJ personallity
type. Used to be more of an INTJ ... and can still be ... just ask me how
something works. Everytime I'll go for the big picture. But my own Journey
has moved me toward INFJ from INTJ.
http://home.talkcity.com/LibertySt/chrisfj13/INFJ.html
Would you believe I work with computers all day long. After 20+ years, I've
picked up a thing or two about them. Currently I provide customer support
for very large corporations (often spending hundreds of thousands of dollars
.. or more) for us (Compaq) to provide remedial support their business
critical systems. (Sorry, I don't do Windows! ;-)
So, patience, listening and communication skills, all are helpful with this
job. The more I learn those skills, the more can help here. The more I
help here, the more it helps me with my job. You get the idea.
Regards,
=jbf=
John B. Fisher

Wilderness Inquiry in Minneapolis does outdoors trips which include
disabled (physical or mental) and able-bodied people. They can accommodate
just about anybody. Try them! Of course, they have to know what your
limitations and needs are. I can ask my daughter for a phone number.
After taking a two-month Outward Bound leadership training course, she did
an internship with WI and with another outfit. Now while doing her Ph.D.
she works at her university's outdoor center and also for Adventures in
Good Company (outdoor trips for women), using her skills. Trips have
included canoeing, kayaking, rock climbing, hiking, skiing, dog- sledding,
snowshoeing, winter camping, snorkeling, biking. Many trips include
beginners--you don't have to know how to do the things to go on a trip!
They can teach you. While she was with WI, they had people with all kind of
needs on their trips. For example, if you can't portage while canoeing,
generally they can work that out. Quite by chance, recently I met a woman
who is going on one of their trips, canoeing in Florida. She has had knee
replacements and is limited in strength and agility.
Jane

Under $50.00 for a months of Natural Gas, must be nice. Here in Northern
B.C. we are paying around the $250.00 mark for gas each month. Mind you our
government did send out rebate cheques, my daughter who lives at home and
has no gas expense received a rebate cheque for $125.00, my friend who is
hooked up to gas didn't qualify. Go Figure!!
Mom is to go in to Prince George this week to get the results of her
parathyroid scan. I sure hope they can find something to help her. She is
growing weaker by the day. Some days are definitely worse than others. She
has started getting quite depressed. Sure wish there were some answers. I'll
keep you informed about the results.
Sylvia

We were late getting the chat started today. There are 4 of us there now.
It's just after 5PM eastern. Come join in!
Hugs,
Pam

Greetings W!
Let me emphasize what Bill is saying about the walking stick. I use hiking
poles (2 like ski poles) when on trails and a hiking staff when on fairly
smooth ground (just one). You can head over to REI ( http://www.rei.com/ )
for more information on them. However, like your husband, I refuse to use a
walker. First of all when my balance gets that bad, I really should use a
wheelchair. Second, I *despise* them. But the hiking poles let me get
around on almost all but the very worst days.
You mention in another note:
It took me a long time to LEARN how to use mine. And it takes fairly
constant practise to maintain the skill. At least once a day I use it to
maintain the coordination.
So, how do you go about (re)learning skills like this? By starting slow and
working upto it. When this first hit, I would end up in a heap on the
ground because I was trying to walk too fast. Soon, I learned that I can do
it by going slowly (on empty sidewalks or streets). Once I got the walking
rhythm down (and that wasn't easy), I added the walking staff using BIG
gestures. Those gradually became ingrained (and more natural). Also use
TWO not one. This helps if balance/coordination is low.
It is NOT easy. I understand. But it can be done. Granted to various
degrees of success. This works on the same principle that the brain can be
retrained after a stroke. Really, it is possible. Yes, loss of neurons is
hard, very hard, to overcome. But researchers are learning that a large
percentage of the
Hey, enough soap box time. Sorry about that. However, I too understand. I
am 44. (I say "only" and my kids say "ancient" ! ;-) I also enjoy hiking,
backpacking and camping. Though not as athletic / outdoorsy as your husband
(not by a long shot), I do have an inkling.
Regards,
=jbf=
John B. Fisher

Wow! Now I really understand the "support" in Support Group! Many
thanks to you all for your replies to this inquiry.
The Nova Scotia resort sounds wonderful! Before the onset of his MSA
symptoms, we had driven around the Maritime provinces, including Cape
Breton and the Bay of Fundy (New Brunswick side,) and have always
wanted to go back. These spots are too difficult now, but Mersey
River sounds great. Looking into this....
The kayaking also sounds lovely. "H" was particularly excited by
seeing the British Columbian coast (orcas up close - unbelievable!) I
will check the web on this. Warm water kayaking also sounds nice, but
we had tried kayaking as a cruiseship excursion off the Florida Keys
(another gorgeous spot) but with the hot weather and especially
without a back rest, it was a near-disaster. We were in a 2-person
kayak, so I paddled for both of us, which was not a hard as I feared
(I'm only 30, eating my Wheaties, too I guess!) But needless to say,
he did not enjoy it one bit; the "coathanger" neck/backache was
excruciating.
We thought a walking sticking would be a perfect option, not only for
hiking but also just daily ambulation (less "stigmatizing" than a
cane or walker.) Unfortunately his coordination is too impaired to
use it effectively, indeed it hampers his walking (trips over
sticktip, or he just drags it.) But thank you still for the tip. If
anyone else is considering this, outdoors/adventure stores carry some
very nice hiking poles, sturdy like carbon fibre ski poles but nice
looking, too.
I realize this request sounds so terribly frivolous compared to the
heavy topics normally addressed in this forum, but I am coming to the
realization that Life must go on, that we must try to live as much as
possible now, and try to fret less over the inevitable....
With sincere thanks for all your suggestions,
"W"

Hi,
Here's another suggestion for an outdoorsy trip. My husband just suggested
that I recommend warm water kayaking with "Blue Water" kayaking in Baja? I
bet they even have a website that you can look at, with potential ways to
contact them. Good luck and have fun. Smiles and hugs, Diane

W,
Welcome to the group.
Pam Bower has a nice place in southern Nova Scotia next to a National Park. How
about putting a life vest on him and canoeing? Or look for National parks with
lots of short trails. Will he use a walking stick, John Moller swears by them.
Make SURE he gets enough liquids as that is a primary concern with MSA. Heat as
you found can be a killer with MSA also.
Accessable Tours out of Pennsylania has escorted tours and does work toward
slower people with great detail on looking for accessible places. They are
expensive and do make it easy for wheelchairs.
Take care, Bill and Charlotte Werre

This is from a friend whom I trust, if you'd like to sign the petition then
click on the link below and read and sign.

I saw the interview with Jane Pauley. Very interesting and uplifting to
hear that young man talk about his life.
Barb

Hi Ann,
Bill isn't trying to jump on you he is just letting people know a bit more
about the Deep Brain Stimulation. Please don't be afraid to share anything
you come across. This is how we all learn. I'm always amazed at the things
we seem to come across, if it weren't for so many of us looking and watching
the news we wouldn't be so informed. Keep up the sharing.
Hugs,
Pam

Hi W.,
There is a wonderful resort in Nova Scotia just a few miles from Kejimkujik
National Park called Mersey River Chalets
http://www.merseyriverchalets.ns.ca/
It is completely accessible with board walks around the river and lake, a
gorgeous waterfall and an outdoor heated hot tub. There is also kayaking
and canoeing included. They have a special dock that is designed to allow
easy access to canoes and kayaks. I'm sure your husband would love it.
They've done a marvelous job of blending in the boardwalks with the
landscape. I've been there several times and I highly recommend it. If you
need any more advice on travelling in Nova Scotia let me know.
Regards,
Pam
Mount Uniacke, Nova Scotia

Courtesy of Tim Foley:

Hi Rose;
You wrote to Meg..... "I know there are two types of reflux meds; one type
is for decreasing the acid content itself and the other is to help the
muscle in the upper esophagus close tightly so the acid cannot come back up
as easily." ......
I am wondering if you know if there is a med for opening up the esophagus so
food will empty into the stomach. Mother's esophagus sphincter muscle has
gotten so small that only tiny amounts of nutrients go into the stomach.
Most of her food remains in the esophagus and sloshes around and then comes
back up with a lot of phlegm. Mother does not want a feeding tube. I wonder
if a mechanical thing like a door opener could work on Mom... Open it when
she is sitting up eating and close it after the meal....You know I'm always
thinking.
Mary Ann-

Have you considered kayaking? You'd be sitting so blood pressure shouldn't
be so much of an issue. I don't know about the stamina issue, but you could
request a two person kayak and have the guide be with your husband doing
much of the work. I'm wondering because Johnstone Strait in British
Columbia has awesome kayaking trips with Orcas. There is a floating cabin
that you could kayak from, but I'm not sure how they get you to the cabin
(if you have to kayak to it---too much work or if they have a motor boat
that could take you out). Also, there are cottages on land you can spend
the night in and take a big whale watching boat out from land; this can be
very crowded. The good thing about the weather is it's definitely not hot.
Bad thing is it can rain lots and actually get pretty chilly. If you're
interested in more specific info about who to contact for a trip, let me
know. I can't remember the name of the company we went through, but I'm
sure my husband would. The co. we went through offerred the floating cabin,
but we chose to kayak to a remote beach where the guide had tents set up for
us and did all of our cooking. We were free to kayak as much or as little
as we wanted and we got within 20 ft. of a mother Orca and her baby one day.
It was amazing :). Also, does your husband have the balance for
horseback riding? Just thinking........
Rose

Meg,
I'd sent this to someone else previously and thought you mind something
helpful in it for yourself. I hope you find some relief.
Has the doctor ever tried putting Dave on two reflux meds. at the same time?
I know there are two types of reflux meds; one type is for decreasing the
acid content itself and the other is to help the muscle in the upper
esophagus close tightly so the acid cannot come back up as easily. I cannot
remember which specific meds. are which kinds, but if you talk to the
doctor, maybe he can start Dave on both kinds at the same time and see if
that makes a difference.
Things which can make reflux worse:
citrus, caffeine, tomato products, chocolate, spearmint, peppermint,
smoking, alcohol, carbonated beverages, tight fitting pants/belt, and there
may be others depending on the person. It'd be good to keep track of the
items that consistently cause problems and stay away from those---or at
least have Dave stay upright (90 degrees if at all possible) for longer
periods of time and eat them earlier in the day (spaghetti for lunch not
dinner).
He should stay upright for AT LEAST 30 minutes after every meal and some
people must stay up longer (maybe even as long as 2 hrs.).
Also, avoid ANY drinking or eating for 2 hrs. prior to going to sleep.
He may need 6 tiny meals a day versus 3 regular ones.
Also, a swallowing study in x-ray isn't a bad idea to rule out other issues
higher in the throat which may be causing problems and he doesn't know it.
However, this does sound like it's mostly, if not all, stomach-related and
the GI doctor is the one who'll have to try to work out something better for
him. Talk to the doctor about a swallowing test in x-ray and see what he
thinks. You'll need a written order for it.
One more thing, make sure he is sitting completely upright when taking
pills; he might need to take them in applesauce, vanilla pudding, mashed
potatoes, or some similar consistency. Does he use a straw? Have him try
NOT using a straw if so.
Rose

Hello all,
First posting ever, and at the risk of sounding flippant (otherwise
I'd be pouring my heart out here at 2AM; Bernice's message
on "willfullness" really hit home...,)I am seeking MSA-experienced
opinions on some "safe" travel options for someone whose idea of
vacation is hiking in the great outdoors.
My husband (just 40 y.o.) is in the early-moderate stages of MSA such
that he should be using a walker for safe ambulation but won't -
acceptance issues etc. - so real rugged outdoors stuff is out, even
with me as his walking aid. Apart from worsening balance and mild
Parkinsonism, low blood pressure (despite pumping up on extra doses
of Florinef/Amatine and fluids) is a BIG problem in warm climates,
and physical endurance is quite limited, too. We tried a cruise, but
it was very hot, on-board life was way too sedate for our tastes, and
unfortunately the shore excursions were too unreliably accessible
(don't get me started on the ER visit for a scalp laceration due to a
fall in Jamaica!) I did a web search and found a nice website, Access-
Able, but with all the emphasis on W/C-bound folks, it would probably
rub him the wrong way (see walker-avoidance above.)
Any suggestions? National parks in Canada are of particular interest.
Thanks,
W.

Between not feeling well, running all over the state if Connecticut to Doctors and a wheelchair fitting I forgot to post them last Sunday. I will tomorrow. If I don't holler at me because I know quite a few of you requested them from me!

Tim

http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group

Bill,
I am sorry that I sent something that I did not know something about.
This came to me from a cousin that is quite high up in a chamber of
commerce, not in N. Carolina but in another state and city.
I will never forward anything again, it seems that every thing that I
send really sets you off.
So from now on I will read and keep my fingers to myself.
I do want to thank you for all of the info that you have sent and for all
of the help that you have given me.
My Al was working for a company that was bought out and then in a year or
so everyone that had been there for a long time and was over 55 yrs of
age was let go.
At the age of 58 he could not find a job.
we had to live on my part time salary and he got jobs that paid only
minimum wage.
We are existing of the pare essentials and it is quite hard not to be
able to make it from one very small ss check to the other
Ann from Soddy,TN

Barb,

That is deep brain stimulation and while it has helped some people, it does wear off and has been unsuccessful in others. I'm not sure I would trust it yet. It is not recommended for MSA It's not new in Europe, they've been doing it for 4 or more years.

Take care, Bill and Charlotte

http://www.postgazette.com/healthscience/20010217stimulaterhealth2.asp

Dear Bernice,
My husband Warren is always asking is there something I can do to help?
Usually I have things under control but one day said yes, you can put our
knives & forks in right places. I had them on table but sitting in his
wheel chair, he felt he was helping me. Its so hard because he was always
helping and told our sons in early ages that "Mom isn't your servant, help
when ever you can." They did and have turned into great husbands with a
helping hand.
Warren broke his hip by trying to walk to bathroom without help, he always
forgets his cane, walker, or just calling me. He said "Well I didn't want
to bother you." Unfortunately, he is becoming less and less able to walk
and we use the wheel chair a good part of time.
Take care dear,
Mary S.

I am deeply sorry to hear about your father.

You did all you could do, now it is time for you to remember the good times with him and get some rest. I pray the Lord will comfort and guide you through the coming days.

Heartache comes but it can be tolerated, maybe even accepted by some but you will always miss him.

Love to you.

Barb in Arlington, Texas
[INLINE]

Good Grief.
My natural gas bill was $38.44 this past month.

How much oil do you use in a month's time?

Barb in Sunny Texas.

[INLINE]

Thank you Judy for the information. You are wonderful. Nice to have
people who care not only for themselves, but for others too.
Thanks again
Earl

I'm sorry for your loss. My thoughts and prayers are
with you and your family.
Melanie in OK

Pam,
If you are talkng about the third one down (01/16/2001) it does no good to
submit the request as there is no committee to study them until Bush decides if
he will allow it.
They have the requests in hand now. McKay pointed that out in his interview.
Take care Bill and Charlotte

Subject: Honor Method

Hope you enjoy this

The Amish Virus
You have just received the "Amish Virus".
As we don't have any programming experience,
this virus works on the honor system.
Please delete all the files from your hard drive, and manually forward this virus to everyone on your mailing list.
Thanks for your cooperation,
Amish Computer Engineering Dept.

Oh I definitely know and fully intellectualize all the things I can not
do ever again as well as some of the things I can do sometimes and not
others. There is no way on earth I would ask for help unless I needed
it. I am 42 years ol and have a masters degree in Speech and Language
pathology with enough credits for a Ph.D. I didn't see the need for a
Ph.D. and it paid considerably less than a job with a masters degree for
the first 10 years of the career. I only planned to work til I was 42
then retire and renovated apts. for the poor and travel to one exotic
country a year. Instead I retired early, 5 .25 years after starting my
life and 7.5 years after completing undergraduate and grad school. We
had everything! I don't mean a fancy car. I mean we had a life. We
traveled 3 times a year at least with our son. Thank God we saved money-
just incase one of us got ill like our older relatives seem to do. That
is just a small history about my family and me.
Regarding the spouse that did everything can't get ill scenario. We do.
Getting ill is not the end of the world, arguing/ disagreeing/
debating/questioning (whatever word justifies the act) over whether
someone can do something is a waste of life. We do not appear to
question the asking of help as 'faking it' when someone is healthy. Why
is that same act of helplessness when someone is ill viewed as self
pity?? Is that view a way of coping with the watching of a loved one
progressive?
I got ill. Noones fault. I bought the house, the cars, dug ditches,
painted the house, even got a 28 foot ladder for my birthday ! Not the
'typical woman' nor wife. I even plastered the inground pool and painted
it! Then it seemed like one day I couldn't do jack squat. I too got the
'she must be faking it.' Why would I fake not walking? I walked and did
aerobics daily. I loved it. Why would I give up driving? I hate staying
at home.
I always had a cleaning person and I cleaned our home daily. I still
try even in my chair to wipe the counters and sit on the floor and wipe
up spills. I hate doing that, however, it isn't the end of the world.
Somedays I don't want to take my 7 AM meds. It is like the kid with
cancer that goes to one of those camps and feels like a regular kid for
a day or so. I wish they had camps like that for YOUNG adults. The
choices young patients have are; nursing homes, day care for Alzheimer's
or dementia patients (usually elderly). Generally, most people under
50-55 years of age don't qualify for senior activities. I got lucky
after 5 years the senior center personnel finally realized I wasn't
going to be cured nor can I drive:)
I don't feel like I have to prove physically whether or not I can do a
task. If I ask or someone sees me trying to do something they know I
can't do then I pray they help me.I do not ask many times because I am
tired of hearing ' u did it this morning' or 'u can talk on the phone,
then u can use that energy to get urself food'; 'no'. The in the same
breath - the old 'if u don't ask me, I can't help u.' is very
frustrating.
At the beginning of my illness I asked for help and got ur going to have
to give up washing ur hair daily or bathing daily, ect. So I did.
There is one thing though that I will tell caregivers and family
members- try really hard not to yell or swear at the ill person. I
understand totally because I once helped care. However, I do not know
what it is like to be any one individual. Take time for urself to
decrease the frustration, because honestly if I could I would jump up
and go to work right now, like I use too. Well actually at 5:30 AM: on
Monday not today- it is Saturday:)
nancy m.
Bernice Bowers wrote:
with these diseases simply can't seem to realize they can no

http://www.nih.gov/news/stemcell/index.htm

Bill:
your never to old to bug me, if you can't , who can? Gee I think I
made everyone's day . Nothing like a good laugh and who better to do
one then me.
And I did it without even trying.
Vera

And how!!!.
Thanks for the hugs and sweet dreams to you also.
Still laughing.
goodnight
Vera

so sorry for your dad's passing, but he is now in God's hands. My
prayers will be with you.
Always Vera

Vera,
:o) And to think I missed that opening to bug you :o) I must be getting old to
miss an opening like that.
Take care, Bill and Charlotte

Melanie:
Are you sure your father isn't Fred? Or maybe twins? If I didn't know
better I would think that your father was Fred. I know that you
understand what it's like to alway's be one step ahead of them or is
it one step behind them to make sure they don't fall?
Anyway we have our work cut out for us, that's for sure.
Vera

Barb,
You did notice the big "IF" in there. They really think they can have a
cure
for Parkinson's within two years from the time they get approval
from NIH to proceed with human trials. However, if Bush changes the rules
who knows when it will be.
Take care, Bill and Charlotte

Debbie:
I think that Fred is trying to get everything done, before he can't
do anything anymore. I understand how it would drive you crazy with
your mother doing just about the same thing that Fred is doing. I
would love to have everything done also, but not all at one time and
most of the time he wants it done , like yesterday and before that is
done his thinking of something else to do.
Thursday Child has along ways to go.
Vera

Oh Boy couldn't we all?

Sleep well.
Barb

Hug for you.
[INLINE]

OOOp's!
Well I guess I got you laughing anyway. Can't you just see me coming
out of the store with a cart full of broads and the kid putting them
in the Van for me? I did mean boards, but it's been one of those days
that everything I've tried to say came out backward's , little did I
know it started with my spelling first thing this morning.Anyway with
all the work Fred has in store for me, A cart full of broad may be
just what I need, they could help.
Glad I made your day.
Sitting here laughing at myself
Hugs Vera

Judy -

wonderful .... great story .... tell Mark he done good ...(and so have all those with him))

cheers

sheila

I haven't written in a long while but have continued to read the postings
every few weeks.
My dad Tiny Merriam passed away on Monday, February 5th. He was gradually
getting weaker but died very quickly from a bowel perforation. His lungs and
heart were not in good enough shape to do surgery, but I believe he was ready
to go on. He had talked to his priest the week before and said he was ready
to move on.
He has donated his brain stem to Shy-Drager research at the Mayo Clinic and
his body for any other studies. Anyone who may have questions concerning
this could contact me. There were a few points concerning this that were
not made really clear to us before hand, but they were very gracious in
making sure we understood the procedure before they took his body.
Bless you all and I wish you the best.
Paulette Barry

Hi Judy,

I am so happy for your and Mark, I hope he continues to improve. Have a wonderful weekend.

take care, Kathy

Hi All,
Mark hit a great milestone this evening. He was able to dine at one of the
island's finest restaurants with absolutely no problems. Mark's children are
coming next weekend so his brother and I took him for a practice run tonight
and to celebrate our 14th wedding anniversary. Mark was able to eat a
beautiful piece of salmon, mashed potatoes, hot rolls, and chocolate pie with
ice cream for dessert, nothing pureed, no problems swallowing, a big step for
the boy and we couldn't be happier. We took the portable suction machine just
in case but didn't need it.
We owe it all to his speech therapist who has been working with him twice a
week since he started wearing the Passy Muir valve on his trach. Much to my
amazement, he does his exercises daily, recites "Mary had a little lamb" for
his caregiver daily, works real hard at only saying two to three words on
each breath and talks better now then he did before. We are very careful
with what he eats and so far haven't had any problems.
Mark's daughter became engaged in December so we are letting him help with
wedding plans (don't tell him, but his daughter and I have a plan to allow
him to help so we can get the tight boy to deal out more dough). She even
moved the location from Nantucket to Kiawah Island so it would be easier for
him to get there. SMART GIRL! She is marrying the nicest boy I've ever met,
he even flew down last month to Savannah, rented a car, drove to the island
to ask for her hand in marriage because he wanted to do it face to face.
Then he flew her to Paris to ask her.
The children and I have noticed a big change in Mark after the terrible
episode in December. Once he got back to talking and eating his attitude is
much better. We do believe that he feels like he now has some control over a
few things which makes him happy. Don't get me wrong, he's still harboring
that awful stubbornness that goes with this disorder, many times won't do
what he is asked, very often acts like a HUGE two year old, but is still
easier to get along with.
Mark loves his caregiver, she and I have become best friends, she can't
imagine why I keep telling her that if he becomes the pain in butt to her
like he does me, to please let me know. She just laughs and tells me that he
never acts like that with her, must be a wife thing!
Our HUGE amazon puppy now weighs in at 48 pounds and she's only 7 months old,
the little fart goes to bed with Mark every night and sleeps at his feet
while I'm at work during the day. He delights in telling me that she has NO
discipline and I'm not doing my job at raising her correctly. MEN, you gotta
love'm!
Take Care,
Judy

http://www.washingtonpost.com/wp-srv/aponline/20010216/aponline162559_000.htm

Thanks John , your post is most welcome, but cellebellar ataxia results
from abnormalities in the rear of the brain , right? Jan's problems are
variously described as frontal temporal and basal ganglia necrosis. Guess
I'm just trying to understand some familial legends that include epilepsy,
shaking palsy , dropsy, fanciful fits, the deep doldrums, running
rages--hysterical/historical accounts typical of any family tree with a few
unusual blooms. Jan sleeps and chokes more and my mind wanders to keep me
awake. Jan's eyes film and tear. It is difficult to keep him from
scratching due to impaired feeling, so I let him sleep in some positions
with his glasses on. His pupils are tiny and he stares into overhead lights
necessary to dress his wounds. He can focus long distances better than
reading lengths so talking books now supplement his beloved classical
music. His left hand retains a little movement . Wish I were able to do
more for him. You seem so BALANCED with such an accepting and reassuring
personality. Who takes care of You? If not too nosy, what is your zodiac
sign and occupation? I feel privileged to read your comforting posts ,
appreciate your prompt reply, and envy your computer ability. LA Louise in
Springhill where yesterday's wild storm has blown away and now the freeze
begins.

Itzik,

The success of the genome project will help all genetic research in time. If they can identify the specific genes that are defective in Parkinson's, it will allow them to look at the markers on that gene. Basically it is one more step toward the top of the ladder.

Take care, Bill and Charlotte

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

Hello to all of you out there ... :)

i wanted to ask , does the success of the genome project can help parkinsn/MSA disease ?

be strong,

Itzik.

Melanie,
That is the first published report I've seen, but that is the work I have been
referring to for the past 5 months. The Moller's and I heard a talk by Dr.
McKay last September on the work his group did at NIH. This is the work that
Bush announced he would ban.
Even the article points to the opponents arguements:
"In the United States, some groups oppose the use of
embryonic stem cells in research because gathering the
cells requires the death of a human embryo."
The cells must continue to live to help cure people.
Take care, Bill and Charlotte
===================================

Tom and Joan, Husband Jan uses a preanesthetic med to control bronchial, nasal, pharyngeal, and salivary secretions. It doesn't seem to interfere with urinary output and I adjust the low dosage when using enemas or missing food or water input. Crushed tablets dissolve readily for tube feeding. Works for us. Another lurker who wishes you the best of times on your European Honeymoon Sequel. Go for it and enjoy. LA Louise

Here is a new study which says that the brain developes in the womb over a long
period of time. The proteins in the brain are much more complex than the rest
of the cells in the body. This work was done in a much shorter time thanks to
the human genome project at NIH. More evidence that brain research must
continue.
Take care, Bill and Charlotte
http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=55&id=108241
'Super Gene' May Hold Brain
Secrets
Scientists hope to unravel fetal brain growth
By Nicolle Charbonneau
HealthScout Reporter
THURSDAY, Feb. 15
(HealthScout) -- When
scientists print out a paper
copy of the chemical
instructions for an average
gene, it's roughly the size of an
open newspaper.
But when geneticists at the
Hospital for Sick Children in
Toronto printed out the codes
for a new gene they'd discovered, the printout stretched
down an entire corridor of the building.
The new gene, called CNTNAP2, is between 50 and
100 times larger than the average gene, but its
tremendous size may be more than just an interesting
piece of trivia. Its discoverers think it may hold the
genetic blueprints that dictate how the brain develops in
a growing fetus.
Not only do these findings advance our basic
knowledge of the brain, they say, but they also raise
hopes of future treatments for neurological disorders
that begin in the womb.
The gene was discovered last summer by Stephen
Scherer and Kazuhiko Nakabayashi as part of a
project to map all genes on the human chromosome 7.
Each cell in the body contains 23 pairs of
chromosomes. Each of the 46 chromosomes is made
up of a coiled strand of DNA, which contains the
genetic information that makes us who we are.
The researchers say they immediately noticed they were
dealing with a larger-than-normal gene. The average
gene contains 20,000 to 50,000 base pairs of
nucleotides, which contain the instructions for that
gene's proteins, but this new gene contains at least 2.3
million base pairs.
"The human genome has diversity," says Nakabayashi.
Thanks to the Human Genome Project, the U.S.
government-coordinated effort to map the genetic
makeup of people, the study was completed in a matter
of months, rather than years, he says. Details appear in
this month's issue of the journal Genomics.
Research by a different laboratory found that the
protein produced by this gene is limited to the brain, but
the Toronto team found that the gene requires more
than 16 hours to produce that protein, Nakabayashi
says.
"That is a long one," says Roger Reeves, a professor of
physiology and affiliate member of the Center for
Genetics at Johns Hopkins University in Baltimore.
"That would be directly a function of its size. It requires
more work to make it."
"In order to make a protein,that means transcribing
the entire gene," Reeves says. "Most genes would be
under 10,000 base pairs, so you can see that the time
required to make a gene that was 200 times bigger than
that is probably going to be longer."
According to the researchers, the long period of time
required to make the protein points to a process that
also occurs over a long period of time -- like a
pregnancy.
The gene would not be the first that's expressed in the
early brain. "There are quite a few that are known to be
involved in brain development from the very earliest
time points in embryogenesis until much later on, up to
specific things that would trigger important processes in
development and maturation of neurons," Reeves says.
And this newly discovered "super gene" already might
have potential implications for those with certain
hereditary disorders.
"This gene is a candidate gene for hearing loss,"
Nakabayashi says. The researchers already suspect
that it may play a role in a type of deafness that occurs
when children are born without hearing in either ear.
Together with French researchers, the Toronto
scientists are launching a study of people with this rare
inherited hearing disorder, hoping to find the mutation
on the gene that leads to this condition.
What To Do
For more information on the Human Genome Project,
visit the Web sites for the Howard Hughes Medical
Institute or Scientific American.
If you get bogged down by the scientific lingo, this
glossary of genetic terms from the National Human
Genome Research Institute should help.
Or, you might want to read previous HealthScout
articles on the gene mapping project.
SOURCES: Interviews with Kazuhiko Nakabayashi, Ph.D.,
postdoctoral
fellow, department of genetics, Hospital for Sick Children,
Toronto; and
Roger H. Reeves, Ph.D., professor, department of physiology, and
affiliate member, Center for Genetics, department of medicine,
Johns
Hopkins University School of Medicine, Baltimore; February 2001
Genomics
Rate This Article
You'll be helping everyone get more readable, relevant news.
Useful?
Very Somewhat Not at all
Easy to read?
Very Somewhat Not at all
Overall rating?
Excellent Good Fair Poor
Very poor
(Your responses are confidential.)
Copyright © 2001 Rx Remedy, Inc.
Last updated 02/15/01
This article can be accessed directly at:
http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=55&id=108241

Have a wonderful time. It will be good for you to get
away.
Melanie

Multiple System Atrophy and Lewy Body Dementia are also
"synucleinopathies".
Regards,
Pam
http://www.ananova.com/news/story/sm_104173.html
'Rusty' nerve endings may cause diseases
Diseases such as Parkinson's and Alzheimer's may be caused when nerve
endings in the brain turn "rusty", according to new research.
Scientists found evidence that oxidative damage to the connection points of
nerve cells is linked to the development of neurodegenerative diseases.
Oxidation occurs when atoms are stripped of electrons due to a chemical
reaction. It causes iron to rust and damages the components of living cells.
US researchers at the University of Pennsylvania, Philadelphia, discovered
that in Parkinson's and Alzheimer's patients, a nerve protein called
alpha-synuclein suffered oxidative damage.
Alpha-synuclein is found at the synapses of nerve cells, the points where
wiring in the brain connects.
Earlier work had shown that mutations in the alpha-synuclein gene caused the
inherited form of Parkinson's disease. The protein was also known to be a
major component of Lewy bodies, the fibrous lesions characteristic of
Parkinson's.
Neurodegenerative diseases such as Parkinson's and Alzheimer's are
collectively called synucleinopathies. Their symptoms are normally caused by
the deficiency of a neurotransmitter - a chemical that transmits messages
across synapses from one nerve cell to another.
When the neurons that produce these chemicals die or become impaired, it can
cause tremors or dementia.
The Pennsylvania scientists found that alpha-synucleins damaged by oxidation
were widespread in Lewy bodies.
Dr Virginia Lee, co-director of the Centre for Neurodegenerative Disease
Research at the University of Pennsylvania, said: "This is a major foothold
in beginning to understand how oxidative stress plays a role in causing
Parkinson's and other synucleinopathies.
"Our studies provide conclusive evidence of oxidative damage in
alpha-synuclein, and that such stress may be a primary event leading to the
onset and progression of neurodegenerative synucleinopathies, particularly
Parkinson's."
The researchers, who reported their findings in the journal Science, said
the work may lead to developing therapies to slow or reverse progression of
the diseases by halting or reducing oxidative damage.
Last updated: 01:52 Friday 3rd November 2000

Hello everyone,

My name is Joan Johnson, wife of Tom, from Seattle. We have met some of you at the Cleveland meeting and at a Portland meeting. I read the emails regularly, just do not respond much.

Tom had botox shots in his face, a doctor in Portland suggested giving it a try for a temporary drying of his drooling. It did not work, the neurologist is willing to try again, he said it could be due to the condition of the botox. I am pushing him to try again, but Tom wants to know if anyone has tried this and did it work? He does go to a speech therapist and we feel that it is not just due to swallowing, but that he actually produces more saliva.

As a steady reader, but rarely a participant in this forum, I wish to thank all of you for an amazing amount of info and caring attitude.

A short bio: Tom was diagnosed in 98, he is a retired physician (Radiation Oncologist), he is almost 61, he is still driving and moving about on his own, but he is much slower. We used to walk for miles, we now limit walking, he bikes up to an hour a day on a stationary bike, but he is thinking that a wheelchair sounds good for probably our last trip to Europe in June. He is very nervous about that trip, but we have a tradition of accompanying our children on their honeymoons (WE ARE SO MUCH FUN & WE PAY FOR THE TRIP!) the last child is getting married May 26 and I told Tom we have got to do it.

I will retreat into my silence, I wish all of you well. Joan

That sounds like an interesting job. I'll be
interested to hear what she finds out. Thanks!
Melanie

Wow! That sounds like my dad. He was always SO active
and independent. He just has a hard time accepting
that he can't do those things anymore. It drives my
mother crazy. He'll get it into his head that he has
to do something NOW. If she doesn't drop what she's
doing and help him, he'll try to do it himself and end
up getting hurt.
Last summer, before his dx of MSA but after his dx of
PD and much back trouble, he wanted to put some new
weather station thing on top of the house. My sister
told him to wait for her and that she would come out
and climb on the roof and do it for him. When she got
there (a little late), she found him on the roof
already!! It's so hard not to get so angry at him for
acting like a stubborn 3 year old, but I also
understand why it's hard for him to give in.
Anyway, no great advice, just want you to know I
understand. :-)
Melanie

Can anyone help me please. I have been taking florinef 0.1mg(3 times a day) and
proamatine 5 mg (3 times a day). I have been on these meds since I was first
diagnosed in October. Lately, my BP is dropping terribly again when I rise. This
afternoon for example it was 120/89 sitting and then 64/38 standing. It started
acting up like this about 3 weeks ago. My doctor is a GP who knows nothing about
SDS/MSA, only what I tell him I have read on this e-group or that he has read.
He suggested I start taking 10 mg of the proamatine (3 times a day). Does this
sound like alot to any of you. I don't want to take too much but then again I
don't want this low BP any more either. I need to get it under control. Also I
have been having alot of problems with acid reflux, he put me on protonix 40mg
1-2 times a day today. Has any one taken this before and how did it work. I was
up with reflux problems until 4 in the morning last night. About eyes, my pupils
dialate when I get in the light and d!
on't go back down when I get out of the light. Needless to say, the eyes are
very light sensitive and also I have a hard time focusing on things to see them
because my pupils are huge. I was told by an neuro opthomologist that the pupils
are part of the autonomic system. My eyes water like crazy too alot of the time.
I have been reading th ee-mails and I also am wondering why people sweat alot. I
thought with this disease, we quit sweating. Thanks for letting me say what I
wanted to say and ask what I wanted to ask. Meg nor defrosting out yet in SE
Nebraska

It has been a much discussed topic on the PSP listserv, that our loved ones
suffering with these diseases simply can't seem to realize they can no
longer do the things they used to. I don't know if it is stubbornness, not
wanting to give in, or a real belief that they can still do it. I know Ken
told me many times, when he couldn't even walk, that "when I wake up in the
morning, I feel like I could just get out of this bed and walk." And I have
tried to put myself in that position to think how I would feel, if something
I had done all my life became impossible. Many times when I asked him not
to move while I was out of the room, or in the yard, I would come back and
fine him on the floor. That is how he finally shattered his femur to a
degree that it really couldn't be repaired. His only remark, was "well, I
felt like I could do it alright." And as I look back, I remember it took me
some time to really believe he couldn't do certain things. This big strong
man who had always taken care of me, was saying he "couldn't" when asked to
do certain things, and at first I thought it was stubbornness. I really
believed he had just given up, or decided he wanted me to do it for him. It
finally sunk in to me that this man had literally been robbed of his
capabilities, and since it was so hard for me to comprehend that, I suppose
I shouldn't be so surprised it was hard for him.
Bernice
Ohio

Hi All!
My sister just sent me this link to an article about
curing PD in mice. Forgive me if this has been posted
already. There have been so many new things posted in
the last couple of days that I haven't had time to
read all the messages yet.
Here's the link:
http://www.ananova.com/news/story/sm_210942.html
Melanie

Dear Friends:
This is just to let you know that I will be off line for a couple of
weeks because I have decided that I have to get away for a while. Ken is
better than he has been in a long time, and he has excellent care here, so I
am going to the desert with a friend for a couple of weeks. i will be able to
get home in two hours if necessary, and i will probably come back for a day
or so in the middle, but i think it will be good for me to get away from here
for a little while.
I will sign back on when I get back. You are all my good friends, and
I could not get through these days without your support. Thank you all.
Barbara Smith

Ann,
That is simply NOT true. Please check your sources before passing that trash
letter on. It has been going around for quite some time. The figure of
$7,900,000 is totally false and Dole will earn a greater retirement than Bradley
as he served longer. And even under the old Civil Service plan they were paying
much more than Soc. Security into the plan often double.
See the facts at
http://www.urbanlegends.com/ulz/ss.html
Take care, Bill and Charlotte

Bill:
our female dog also can get pills out of cheese and eat the cheese and leave
the pill. For some strange reason, she eats both pills and butter if I use
butter.
Barbara S

Subject: FW: Social Security
plan.
In
and
I

Vera,
You know all the talk about a iron problem we've had on the list? Maybe a cast
iron skillet stategically placed on Fred's head would get his attention.
Or it might dent the skillet :o) MSA does tend to make stubborn patients.
Take care, Bill (Charlotte would not agree with me on this one)
======================================

Vera, It drove all of us crazy when my mom moved around without assistance
and without anyone around. I told her over and over that the disease
wouldn't kill her as much as the falls. She just could not give in to the
disease -- that is how she saw it, I think. Perhaps, that is what is going
on with Fred, too. I think that there was so much that was actually
impossible to do that she tried to do even the things that it wasn't prudent
to do. Love, Debbie

OOPS

Did you really mean to say you had a cart full of
"BROADS" that Fred wanted. You are some kind of gal who would get a cart full of BROADS for her man.

Just for fun. I know you meant boards. But it would be great if the guys were able to take care of all the activities plus the BROADs in their life.

Sorry to hear of the leak in your van. Have the seals broken?

Barb in Arlington.

Here is a hug for you.
[INLINE]

Unsubscribe or you mail box will over flow. It is easy to get back on.
Barb in Arlington

Bill you should really get an ointment for that "rash". LOL!

Hi Kathy,

In a week you can expect about 300 or more emails to be waiting for you. If I were you I'd set my account to No Mail and if you wish when you return you can go on the website and read back for anything you might have missed.

To switch to No Mail send an email to:

Bill:
Your days ago are only my today's. Now I know how to get the pill
down with the redi whip, but what do you do with the ones that are
going down the tolet? I tried the tidy bowl guy, but I think all the
pills Fred put's down the tolet, sank the ship.
Maybe your dog can train Fred to take his pills with the cheese. At
least it put's a smile on the lips saying cheese.
Always Vera

Vera,
I wrote that days ago! You do't expect an old guy like me to remember even
yesterday - do you? :o) Charlotte likes Redi-Whip as well as chocolate
however. Of course she also likes Cool-Whip which I can not stand. We tried
pudding and it works okay, but I keep a can of Redi Whip for pills. She has
also educated our 7 year old grandson in Redi-Whip, he goes in and squirts a
mouthful in his mouth. I'm going to shoot them both.
Our female dog will take pills in a second if you wrap them in cheese. You must
do it tightly though, or the pill will come out whole and the cheese will be
gone.
Take care, Bill d Charlotte
====================================

Hey Barb,

I had a rash that wped out a couple of my .gifs. I realy miss the little tiny bear opening and closing it's arms would you send it to me.

Take care, Bill and Charlotte

Barb:
I'll hang in there. I know from what you have told me that Fred is
alot like Ralph. (maybe even join at the hip). I think sometime will
I ever make it and then I think of you and know that you did it and
are still willing to help other's here and then I know I can do it
to, Thanks to you.
Hugs back
Vera

Kathy :
your welcome for the recipe, and I think I gave it to you as to where
Bill won't give me a bad time with the four letter word.
Always Vera

Barb, what a nice gesture to share Ralph's Gaither collection with others!
I'm sure he would be very pleased that others were getting to enjoy them too.
Have you heard them sing, " Please let me sing in the choir " ? Ralph is
getting to sing in the Heavenly Choir now! Thanks for your note. Hugs, Pat

Ok Barbara:
The big question is , how did you make the square in your subject
line? Just wondering ?
Ok! so I'm nuts , but what can I say, I'm Freds caretaker and he has
driven me to it, well close anyway.
I know it's not easy being a caretaker, and mostly to one that won't
do what they are suppose to, but I hang in by trying to look at the
bright side of everything or just laugh at it. This week I have a
good and a bad list. On one hand has been good and on the other hand
has been bad. On the good list The doctor puschase Freds w/c for us
on the bad list we got a letter from a recovery service saying that
they are billing us $130 for it. On the good list Fred hip is better,
on the bad list he want to go in the attic. on the good list I got a
new van on the bad list the van leaks and I've got the only van in
america with it's own pond in it.On the good list my medport work
great on the bad Fred is still not taken all the meds. On the good
list I have my coffee on the bad list I can't fine my raspberry
chocolate creamer anymore. The good list I'll keep, the bad list I'll
try and fix, that's all I can do. Just hang in there Barb and know
like John said "your not alone" . Boy! are you not alone. WE've all
been there and done that. Just know God get's us pass it all some
how. Once in awhile he'll even send an angel. I got one the other day
when I had Fred in the w/c and pulling a cart full of broads that
Fred wanted. A woman coming out of the store with her son ,had him
help push the cart for me. When we got to the Van I thanked her, but
then she spoke to her son and the next thing I knew he was putting
every one of the broads in the van. God sends blessing when we aren't
looking and I thank him for that.
Always Vera

Bill:
I had to put it in that way or I knew you would let me hear it again
about the cube. Just had to give you a hard time, now that Anne isn't
here as much to give it to you.
Vera

How neat, Pam!! Yes, David is outstanding. We think The Vocal Band is the
best its ever been!!!!!! Glad to hear from you. Take care, Pat

Experts disagree over Medicare drug proposals
WASHINGTON, Feb 15 (Reuters Health) - Medicare does
badly need an outpatient prescription drug benefit, four
leading experts told the Senate Budget Committee Thursday.
But the experts, two Democrats and two Republicans, were
divided over whether Congress ought to pursue a drug
benefit alone or combine it with broader reforms of the
program.
The Republicans, former Health Care Financing
Administrator Gail Wilensky, who advised President Bush on
health issues during the campaign, and Kathleen Means, who
headed the Republican health staff of the Senate Finance
Committee in the 106th Congress, argued that new benefits
should only come with reforms.
"I strongly recommend that the Congress not incur major new
benefit expansion costs without also putting into place a
framework for broader program reforms that promise to
enhance longer-term financial viability of the Medicare
program," Means told the committee.
Agreed Wilensky, "Because of the difficulties that come
with
changing programs involving seniors, it is important that
we
establish now where we want to go with a reformed Medicare
program and before we add yet more benefits to the
program."
But Marilyn Moon, a senior researcher with the Urban
Institute
and a former Medicare trustee, argued that simply adding a
drug benefit could serve as an important stepping stone to
broader reform, by standardizing the benefit package and
lessening the risk segmentation of the Medicare market.
"Competition will work much better if the basic plan that
all
must offer is sufficiently comprehensive and standardized,"
she said.
Meanwhile, Urban Institute President Robert Reischauer, the
former head of the Congressional Budget Office, warned the
committee that any cost estimates of a Medicare drug
benefit
are likely to vastly understate the true cost over the long
term.
The problem, Reischauer said, is that even the most
expensive proposals introduced so far provide much less in
benefits than most in the working population enjoy. Even
the
most generous plan "is not a prescription drug plan that
most
Americans would find acceptable," he said, and "once in
place, there would be enormous pressure (on Congress) to
make it more generous."
© 2001, Reuters Health Information Services

Hi Melanie (and all)
I took the liberty of forwarding your email to my daughter,Kacey. For the past
two years she worked in the corporate office of the Archdiocese of a major city
and her job required her to prepare responses for the priests/deacons/brothers,
etc. to emails using scripture. The emails were from people who wanted to
remain anonomyous while asking very tough moral questions. It was very
interesting work and she enjoyed it, altho truth be told, Kacey does NOT always
agree with the Church!! However, she would always try to provide the writer
with enough variations in the scripture to allow that person to reach their own
conclusions. Many times, of course, the "answers" were black or white....but
there were other times where some room was left for personal interpretation. So
I'm hoping that she might be able to recall some that will help us out here!
Stay tuned.....
fondly,
kaye

Hang in there Vera.

When you are just about over the edge you may get a good day.

Your man does sound a lot like Ralph was. His body just could not keep up with all of the activity he thought he had to do.

Just be ready to pick up the pieces.

Barb
[INLINE]

Kathy:
Fred has a very bad case of dry skin. I'll try the recipe for the
lotion that your doctor gave to you. Thanks for putting it in.
Vera

Greetings Earl !
Pardon me for asking. You wondered:
Are you wondering if these might be symptoms of MSA? Vision problems
(including incorrect amount moisture in the eyes -too dry or wet- ) can
definitely be caused by MSA. Same with some hearing loss and problems
walking.
Being very tired may be due to sleep problems. That can be caused by MSA.
And that is something that can be managed. You might want to see if she
needs to see a sleep specialist. Regaining her ability to sleep well could
reduce some of the other symptoms. And that help both of you.
And you certainly should see if you can get some help. It is not weakness
on your part ... just simple fact that care giving can be a daunting and
overwhelming task. Get help, so you can stay healthy and able to help.
Congratulations! How wonderful!
Regards,
=jbf=
John B. Fisher

Hi Debbie:
Thank's for the support. Freds hip is doing better, but Heather and
I were in the kitchen yesterday and heard a noise and went to see
what it was, Fred was up in the attic trying to put a broad up there
so he could fix the fan in the attic. Lucky he didn't fall up there.
I don't know how I would of gotten him out. He still isn't using the
cane or walker around the house. You said your mother would do the
same thing? Did it drive you nuts also,or is it me that Fred just
wants to drive nuts?
Vera

Hi All:
I got a note from Anne also, she said she is getting a little
thinner, but is doing ok. Right now she has to do a report on serial
killers for school. Doesn't really like doing it.Can't say I blame
her. Sent me some picture of her and her dog, plus another picture of
her and Tony. I've been telling her how everyone is asking about her.

Well, I simply must jump in here. Do you know the (fairly new) tenor
that is with the group named David Phelps? He grew up in Tomball in
the church where my husband was his youth pastor. His mom is one of
my very good friends and is also a faculty member her at Tomball
College. We try to take partial credit for how well David has turned
out although we are careful not to say that around his parents, who
for some reason feel that they had something to do with it.

Bill:
Did you mean to say Redi Whip is the next best thing to chocolate?
You did , didn't you?
Vera

My wife is having the above problems now. Has problems with seeing.
eyes watering rapidly,very tired, exhausted, hearing loss and cannot
walk very much. She is in her Motorised wheel chair and scooter
more every day account of her balance. Do these problems sound
familar
to anyone. Information would help. I am trying to get Aid and
Attendance help for her now, because I too am getting old and I am
doing more each day but, I will always take care of her. We will be
married 55 years on April 20, 2001.
Earl

Hi All, we wanted to suggest something that we find very uplifting! Most
of you may already do this, but we watch the Bill & Gloria Gaither Homecoming
gospel music videos. They are great! Good for spirit & soul! You can find
them at any Christian book store. A little expensive, but worth the money!
Usually 29.95, unless you catch a sale. My favorites are, So Glad and When
all God's singers get home. Just an idea I wanted to pass on. Hugs to
everyone, Pat in Okla.

Greetings!
You mention:
He might trying to cover his eye. It's not unusual for MSA patients to be
very sensitive to light. (The iris and the amount it is open is controlled
by the autonomic nervous system).
Regards,
=jbf=
John B. Fisher

Melanie,
I think that stressing the idea, that the cells will die if they are not used
and will continue to live and heal another person if used goes a long way with
many people. The only cells destroyed are the cells that would become the
placenta (afterbirth). If the people insist that the cells are destroyed or
killed you can try this verse:
Greater love hath no man than this, that a man lay down his life for his
friends. John 15:13
You can also use the miracles of Christ to show that he wanted people to be
healed.
Read the Bill introduced by Arlen Spector last year. I don't have time to look
it up right now, but if you go into the 106th Congress Bills and type
"pluripotent" if will come up with the Bill. It is extremely tight on what
cells can and can NOT be used. It also bans cloning humans.
The other argument they use against it is that we will be selling limbs and
organs. That is not the intent of the research. The research is to grow
specific cells that will repair or replace specific dead cells (like blood cells
in a blood transfusion). The cells would repair the damaged organ or nerves
themselves, not grow whole new hands and replace them. They do reattach hands
now, but there is still nerve damage which can not be healed at this time. The
nerves could possibly be restored through stem cell research as Christopher
Reeve is hoping.
Remember also, that this is experimental at this point. It has worked
specifically in Parkinson's in mice and a few monkies only. There are some
studies which indicate it may also work for ALS. Once they do the experiments,
they may find that they can use some sort of animal cells and put human DNA into
them. But the basic research MUST be done before they can go further.
The existing eggs are all we will ever need also. There is no need for abortion
or fetal parts as they say. The fetal tissue transplant studies are over and
done with - and they took less than 1000 fetuses. Those fetuses did give their
life for the good of their fellow men. In those cases, the mother was killed in
an accident or died somehow and the fetus could not survive on it's own (ALL
were under 6 weeks). The survivor allowed the fetus to be used and did not
receive compensation for the donation. Just like donating your brain for
research, you do not receive compensation for it.
This will convince most people. I have talked to several young Republican
groups in this area and most agree when you point out that the cells are living
on and saving people like Charlotte. It helps that several big Republicans also
support the research including Spector, Dole, McCain and Mack. Many religions
also support it and feel it stops the threat of abortions for money as so many
feared.
The cells are growing and multipling now, we do not need additional cells, they
are here. We only need to set the protocols for the tests to see if they work
and do the human tests. There are already over 30,000 Parkinson's volunteers
for the 80 or so slots in the tests. And those volunteers know there is only a
50% chance they will get the stem cells on the first test, since the rest will
get an operation with only a placebo. They do know that if the tests are
successful, they will be the next to get the real cells.
Hope this helps, Bill and Charlotte

Bill (and anyone else who wants to chime in here),
My father is finally over the shock of having received
his diagnosis and, happily, is moving on to making
this his "purpose" in life. My father has a lot of
connections in his state and has decided to use them
to try to make people more aware of MSA and encourage
politicians to support funding of stem cell research.
I think most people touched by MSA feel like my father
does. Until people are aware of this tragic disease,
it's going to be difficult to get support for research
funding.
My parents live in Arkansas, which right now has some
rather conservative Representatives who are very
anti-abortion and typically opponents of stem cell
research. My familiy and I feel as you do, that,
regardless of where people stand on abortion and in
vitro fertilization, it is being done and will
continue to be done whether stem cell research is
conducted or not. If we allow something good to come
of all of that, then God and everything good
ultimately wins. If we don't allow something good to
come of it, then it is truly a waste of life.
So here's where I need help. Are you aware of biblical
references which support this point of veiw?
Obviously, I know that Jesus and the disciples weren't
conducting stem cell research on the water, :-), but
we are thinking that if we can find some scripture
that supports this point of view, our letters might
carry more weight with the religious conservatives in
our states. I'm planning to talk with the pastor at my
church about this and get his opinion and do a little
more searching on my own.
Sorry for the windy note. Any help is appreciated!
Melanie in OK

Barbara Smith, Thank you for your concerned reply. Jan has used Aricept for years with little result possibly because his is a non Alzheimer type dementia. Exelon was never mentioned, Cognex untried and neuro says there is nothing more that he can do. Jan uses his limited left hand to cover his left brow or forehead and I believe some thing is occurring there. The neuro says it doesn't hurt and leaves the care and comfort of the body attached to the brainstem to other practioners. The articles Bill Werre and Pam Bower sent me are informative and highly descriptive of Jan's condition past and present. Yet it is back to treating symptoms because there is no cure. Chromosome 17 q 21-22 research may help future generations.

This directory is intended to aid in forming local MSA/Shy-Drager support
groups and to generally keep in touch should people unsubscribe from the

HI, Barb in Arlington here.

My dad and oldest brother were welders for as long as I can remember. That was during the late '30-"60'.

Of course that was long before they really knew the risks. I can remember the treatments they had for their eyes when they would get "burned". They used black tea patches or sliced Irish potatoes. They worked on pipe lines and oil field tanks, refineries and the landing crafts in the 11 WW.

There was a nylon factory they helped to build somewhere in the south. Georgia I think. The ship yard was in Seneca. Ill. Dad got his toes frozen in the bottom of one of the landing crafts in the winter of '44. What a misery that was. We lived in Ottawa at the time. To this day I did not know how he got home from there when he hurt so bad. That was when they first started using the steel toe boots.

So far as I know they did not have any problems with the welding but the asbestos played havoc with my brothers lungs. Of course that was long before the real danger was recognized.

My dad slept on flat bed trucks and stayed in tents while they were building the pipe lines across this great country of ours. The refineries are still in working order. It is hard to believe it has been over fifty years since I did much thinking about these things.

It was just a way of life.

When my dad was younger, during WW1, he worked in his dads blacksmith shop and they built ambulances. On the side they built a few stills for the good drinking beverages of the age.

I know when he would work with some welding rods that were poison he kept a piece of lemon in his mouth to catch the black residue. They really became ugly after just a short time. Of course when I remember how black he was when he came home I know a good part of it went into his body along with the little pieces of metal that sparked as he worked. We used the tweezers on him regularly to get the bits of metal out of him. They went every where.

Yes I can see where the poison rods might cause some problems but my dad never