My blog

John,
I am trying to get both computers networked so I can back up to each other.
This one has a 20 gig hard drive and the other has a 12 gig HD. I may even add
a third computer as my grandson gets into webpage design and that will probably
be a P IV with a 50 gig HD. All will share my DSL line. With 10 gig of space
taken up, I can't handle the cost of tapes anymore for backups. I am also
looking at a RW- CD for back-ups.
Take care, Bill and Charlotte

In a message dated 07/18/2001 11:15:28 PM Eastern Daylight Time,
b.werre@... writes:
<< Does he have any movement problems or swallowing problems?
Just curious, my mom has Parkinsons or parkinsonian symptoms, and problems
with feinting (that doesnt look right), when she stands. Is this a ShyDrager
'thing' or just something that pops up? And when it comes to eating, she
will chew solid food till the cows come home but wont swallow. they did
swallow tests with the results being that she has no problems swallowing.
Now she is on a pureed diet and is doing good feeding herself and swallowing
(she wasnt before, even with pureed unless I fed her and then gave her a sip
of water after every bite). Any ideas about that also? Thanks for the help.
Hope I havent asked to much at once. Linda

Melaine:
Thanks for telling me about the web worms. Sorry they are doing the
damage to the tree. We had bugs out here that did the same to some of
the red woods. It's a shame.
Take Care
vera

Verl:
glad you got the list ok. I would of send it e mail, but your email
and me don't seem to get along.:o)
Gald you said something about the support group to them.
Verl and I talked the other day on the phone, I tolded her that there
wasn't a support group out here, We talked about some kind of pinic
or b-b-ques in the Area of L.A ( not bill's farovite place)
I guess Verl is willing to have something at her place, by this note.
She is talking about Sept or Oct. If any of you out here in s.calf
would like to do something like this please let us know.
Take Care Vera

Byron:
You mean I'm not perfect? Gee! I guess it's just not you then:o)
Take Care Vera

Hi Judy:
I remember you saying that Ned had the pneumonia and him having to be
on the meds longer than most, to get rid of it. Also about him not
wanting to go to the hospital. I don't think you tolded me he was on
Zithromax, but I could be wrong. I'm glad that it does the trick for
him. That's something to remember if Fred should ever have it again.
Not sure if Anne has oxygen or not, but from what Tony posted here
about Anne, looks like it's not working for her yet. Maybe she will
have to be like your Ned and have the meds longer. I sure hope it
works for her the same way as Ned.
Glad you got away for the week end with your friends. You need some
time to yourself also. I'm going to a baby shower Sunday,my friend
sister is having a baby and the shower is then. I wasn't asked if I
wanted to go, I was told I was. Cindy already arranged for her
husband to come over here and stay with Fred. Guess I'm going huh?:o)
Hugs Vera

Vera,
Those were webworms that you saw. Trust me, people in
this part of the country don't think they're neat at
all! They can do a lot of damage to a tree in a hurry!
They're really bad this time of year.
Glad you found AR as nice a place as I think it is.
:-)
Melanie in OK (but my heart is in Arkansas!)

Barb:
I don't know why they didn't give him the Jobst sox before, but this
is the first time.I got the RX for them from the doctor yesterday in
the mail. You said you couldn't get Ken's b/p control without them.
Maybe then they will help Fred with his.
Thanks for the infor about them. I know nothing about them. Barb in
Tx tolded me to put powder in them to get them on. So will try that.
Take Care
Vera

smiles......As long as everyone isn't perfect and it
is not just me...
Byron

Byron:
Ok, Hawk eye, I must admit I did make some misake's in my note, but I
did put it that Barb was at her sister in Arkansas. Not my sister
Barb was in Arkansas. I did put Ak for Arkansas that I do admit. Just
have to say I didn't have my coffee yet when I wrote the note, and
I'm sicking to my story :o)
Take Care
Vera

Hi Bill:
Look's like you opened another can of worms with the people in
Arkansad huh?:o)
I do have to say I really did like Arkansas. When I was there in 93
it was a really clean state. The Hwy's , rest area all really nice.
We camped at the KOA there in Ft.Smith. One of the nicest I've seen.
Used the Camping Cabins and they were really nice. The place had them
fixed up so nice. Was like a home away from home. Saw some trees with
silk web's on them, and some kind of worms in the web's. It looked
like it could of been silk worms (talking about can of worms) but
wasn't sure. First time I'd ever seen something like that, you know
us city people don't get a chance to see things like that. Really did
like Ft. Smith. Have to say I wasn't much on Little Rock either, Bill
C can keep that.
Your also right L.A isn't that nice, but the outside area are better.
I know I was born here, and lived here all my life, but deep down in
my heart I should of been a country girl. That's why I live outside
of L.A in Walnut. More country, so I get the best of both here. We
got the name Walnut, because we have Black Walnut Trees here. Not to
far from Cal Poly the college they have a spot where they grow. The
City has it where they can't build or cut them down and it's home to
also of animals there.
Well glad you found your old computer. It was nice talking to you and
Barb.
Now that you opened the can of worms, can Fred use them for
fishing?:o)
Take Care Vera

Virginia,
Jim was kidding you - he knew what you meant :o) Several people here have had
to go that route.
Take care, Bill and Charlotte

Berit,
MSA patients do usually have a low dopamine level and in times of stress, more
dopamine is needed. Every patient is different. Be thankful that he can walk
that far in the evening. I don't know about Norway, but here most theaters are
accessable to wheelchairs and we have gone to the zoo and museums in the last
year with Charlotte in the wheelchair.
It sounds as if his blood pressure may be lower in the morning. Is he on
something like flourinef or Midodrine? That would also account for the problem
when he rises after sitting for a long time.
Take care, Bill and Charlotte

Dear Peg and Jim, Sometime you write things without realizing how they
sound. I "haul" my husabnd from the bedroom to the den everyday in the
wheelchair, put him in a recliner, end of day back to the bedroom. If we go
out to Drs office or anywhere, He is in wheelchair, it fits in van and
whenever we are away from the house, he is in the wheelchair- I just walk
beside it - have learned to use the control fairly well-don't run hin into
as much stuff as I used to. Hope that clears up what I said. Ginger

Thanks a lot for your response!
My husband has no swallowing problems, but some times he has problems with
chewing. There is a big difference between am and pm in how able he is to
walk and stand up. In the morning he often totters as if he is drunk, but in
the evening he can walk at least some hundred meters. But there is no chance
for longer walks - specially not uphill walking. He sometimes has spasms,
when he has been sitting for a long time and then rise. Therefore we very
seldom go to concerts or movies.
Have you noticed any psychical influence on how the patients react on their
illness? I feel that when my husband is in high spirit, he is able to do
more than when he is down. Perhaps that's how we all are..
Berit
-----Opprinnelig melding-----
Fra: Raymond Werre [mailto:b.werre@...]
Sendt: 19. juli 2001 04:57

If you have Norton and your virus definitions are dated 7/18/01 you are protected against this virus also. The virus only appeared on 7/17/01

Bill

Hi Judy, thanks for the tip on liquid Amantadine! I will ask about it on the
next refill. That would be easier. Al doesn't seem to be feeling too well
today, but you know how it goes, good days and bad days. The home care nurse
is coming today, so she can check him out. BP is good and no temp. so I don't
think it is anything serious. Hugs, Pat and Al

Tony,
Sorry, I have never heard of that test either. Are you running a vaporizer
to keep the humidity up in your house? Can't help a lot otherwise.
I have heard of them going into the lungs with some sort of contraption (many
years ago {1950's}to get a peanut out of my brother's lung). People here
have mentioned suction to get mucus out of the throat area.
So if all else fails, tell her I have come up with a solution (read the whole
thing first before you try it :o).
Have her do all the following (and tell her I had heard of this method)
Have her bend over a gurney or something steady and rest her body so she
won't fall.
Put the collection container in front of her.
Then tell her seriously that Bill said "Give her a good swift Kick in the
bum!"
If she doesn't die laughing she may come up with a sample.
Seriously is she worrying about doing her assignment? If so, she may be best
off dropping out for medical reasons, I know that is an option here and does
not count against you. That may take some stress off her.
Give her a hug for us, Bill and Charlotte

Hi everyone: Can anyone suggest what kind of pad should be used to sit
on to prevent sores & also to be more comfortable? Bob is in a
wheelchair most of the time now, & he complains the seat is not
comfortable..there must some kind of seat pad out there..any
suggestions? Thanks....regards,jerrie

Hello All,

I know you all do not have McAfee virus scan, but take warning!

((((((((((((((((( McAfee.com Dispatch )))))))))))))))))))))

Hello All
I am sorry I have not been able to keep up with letters the last
couple of days. I have had to catch up with some study. Was really
getting behind.
Anne is no better. It is one step forward and one back. She saw the
doctor today and we ended up on a wild goose chase which exhausted
Anne.
He said that she is not improving as she should be. Anne said that
wasn't surprising as she cannot get rid of the gunk! Sorry about
that but that is what is happening. She will cough her heart out and
nothing. She cannot provide a spuitum test that is necesary to get a
particular antibiotic the doctor thinks she needs. It is the only
one you need an authority for, but can only be given with proof of
the bacteria. The doctor thought he had the answer. Sent her to ER
for a humidity enforcing test I think he called it. He said it would
definitely do the trick. When we got there they had never heard of
it! Sent on to to lab testing centre and they had never heard of it
either. Must be common in the States, the doctor is American, but
not here in Australia. She also had to go for xrays. These confirmed
no change. I don't know what else we can do. She is on antibiotics
strong, a volumatic inhaler, decongestant and having physio.
Hospital did come up but the doctor said with Annes immune system now
being so low she would be more likey to pick up more bugs there. Not
many on the Gold Coast are bug free at the moment! So he doesn't
want her amongst all the different bugs. Has anyone got any other
suggestion?
Thanks Best Tony

Vera,
Thank you so much for your call and for your letter
which I received today. I will check all the messages
you listed. Talking to you was really nice, as it
seems that our husbands have pretty much been in the
same situation. It is great to talk to someone who
has some experience with MSA, Shy-Drager Syndrome.
We talked about setting up a support group in Southern
California. I would be happy to have a barbecue at my
home in Simi Valley which is north of Los Angeles. If
any of you who live in Southern Calif. are interested
in getting together, please send an e-mail to
vvmooney@... and let Vera and I know. We will
be the coordinators. If anyone else would like to
help, please let me know. We will plan a barbecue for
late September or October when it is a little cooler.
It would be great to meet all of you and share our
experiences, fears, and dreams.
Verlene

This message is for Bill and Charlotte. I want to express my very sincere
appreciation for the time and effort that you put into this mission of
sharing. You suggested that my mother not be taken off flourinef. Last
Monday I took your suggestion to the doctor and she was put back on it Tues
am. She is beginning to be a different person. She was actually asking
about dental floss tonight. Monday night she didn't feel well enough to
even brush. After getting her ready for bed (she is in the nursing home at
the moment) she said ok I'm ready for my birds now..then broke into a
giggle. Something we last experienced over 10 weeks ago. She watched my
face as I tried to figure out just what it was she wanted she got so tickled
and said "I love watching yall's faces trying to keep up with all that I
want." and explained she was ready for me to turn on her CD of nature
music. And asked tomorrow will you get me my sinemet...Do you remember
mentioning that she maybe should be back on it?????I think she is unable to
walk or move in the bed because of rigidity. I spoke to that dr. today
about having it back. I suspect her turn for the better had everything to
do with your expert, loving suggestion. If it wasn't that, then it was all
the prayers. Either way allot of people are happy tonight. Good night and
God Bless. Mary Jo

Vera - I noticed that you had said Anne was on Zithromax. That's what Ned
was prescribed a couple of months ago when he had aspiration pneumonia and we
opted not to admit him to the hospital. The usual dose of Zithromax is only
2 tablets to start and then one tablet for 4 or 5 more days, but Ned required
an additional prescription for 6 days. He took it continuously for 11 days,
but it did the trick. I still feel we made the right choice of not going
into the hospital -- not much chance of his picking up a staph infection at
home! Although it was hard on me having to be up with him during the night
suctioning etc. Is Anne on oxygen? Judy

Patricia, We bought my Dad a lift chair made by Niagara. He love it.
It goes from a lying down position to standing him almost all the way
up. It is electric so he uses little of his muscles (which at this
time is a blessing). It is a beautiful chair. And the grandkids love
to "ride" in it with him. If you would like additional information
you can email me at waterfall53@... Hope this helps, Kay

Patricia,

Are you talking about a chair that helps you stand up, or a stair lift which runs you up and down stairs on a track? The track thing we have is a Silver Glide and works fine.

http://www.accessind.com/Silver-Glide.htm

If you have a set of stairs that turns, they also have a model for that at

http://www.accessind.com/Stair-Glide.htm

Take care, Bill and Charlotte

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

Waverly.
I also have trouble retaining my fluids.. I have about 4 grams of salt
day and about 100 ounces of fluid. and with off of this I still manage to get
dehydrated. It is averaging out now that I am getting iv saline every 4
weeks. That helps but it doesn't last. I would love to be able to get it more
often.
Patricia

Hi everyone,
Could anyone here recommend a chair lift brand. Thank you,,
Patricia

Ginger,
Does "I still haul him around in it" mean you have an electric wheelchair
built for two?
:
he would prescribe it if he tried it out and could handle it. He handled it
for several years, now I still haul him around in it because it easier on me
than pushing. ....
********************************
*** 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.
********************************

Waverley,
I didn't notice if anyone responded to your comment about getting enough
salt, and I don't know if this fits dietary restrictions you may have, but a
number of people on this list help get enough salt through the use of a
drink from bouillon cubes and hot water. Some also use buffered salt
tablets such as Thermotabs. Peg is currently using both.
Peg and Jim from Guam
wondering if anyone else experienced this complication with thier MSA and
what they did to aid it. I can't seem to get enough sugar or salt in - and
I can't eat anymore than I do and as often as I do. And I eat the proper
hypoglycemic diet. ....
********************************
*** 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.
********************************

I'm reposting an old note because there are a lot of outfits
selling lift chairs and wheel chairs and the markup can be huge.
As you will see from the note below, I recommend Spinlife.com.
They sold me a wonderful wheel chair at 1/2 of what I could buy it
for locally. And it arrived fast and fully assembled.
I recommend that you spend the savings on getting a fairly light
chair. I am very happy with the Breezy 600 I bought my mom
because I can easily remove the footrests and when I do so it
weighs about 23 lbs, thus fits easily into the trunk of my car.
If the person will be sitting in it for long periods, you may want to
buy a supplementary foam or gel cushion.
What I really liked about Spinlife was that when I ordered they
asked me lots of questions to get the right size and configuration
for my mom.
As for lift chair, I screwed up a bit and got one that was a little
too large. But again, shopping on the net can save hundreds of
dollars.
Also, if incontinence is a present or future issue, consider
getting naugahyde upholstery for only a little extra money.
The mdicare forms can be a pain but if you are persistent and get
your
doctor's approval, you will get some money back, but not the entire
price of the lift chair. Inquire with Medicare by phone first.
Hope this helps. See web site below and comparison shop.

Virginia,
Thanks for your reply. Do you know what brand of
wheelchair you have? I'm glad to know that Medicare
will reimburse so much of it.
Melanie

By lift chairs, do you mean the kind that will take
someone from one level of a home to another or the
kind that raises up and makes it easier to stand from
sitting? If you're talking about the latter, my
parents just bought a Lazy Boy which my dad loves. It
looks really nice and seems to work well.
Melanie

Hi all,
My daughter Lisa and her family were on their way to a Baltimore Orioles
game yesterday when this happened.
http://www.msnbc.com/news/602197.asp
Luckily they heard about it long before they got to Baltimore. Aren't
cell phones great at times. Note they were on a bus with about 55
people and three people got phones calls at the same time. I hear they
are still fighting the fire.
Take care, Bill and Charlotte

Melanie, My husband got an electric weelchair, Mediare paid 80% the Dr said
he would prescribe it if he tried it out and could handle it. He handled it
for several years, now I still haul him around in it because it easier on me
than pushing. He also had a walker for a while , no wheels like some have
because he would set it ahead and lean on it with a lot of weight when he
took a step. Weel, that's my 2cents worth. Ginger

Byron,
Are you a patient, caregiver or relative of a patient? I don't remember your
name or circumstances. I also don't remember welcoming you.
Softball can be hell on bones, I pitch and always break fingers. Have
sprained my ankles. In spite of what they say, it is not a soft ball :o) I
have played in leagues for 45 years. About 6 years ago I was playing in four
leagues and as many as 9 games a week.
But Charlotte and I would miss the museums, zoo and theaters most. We still
try to get to the zoo three times a year and the museums a couple of times.
I think next year the new Air and Space Museum Annex at Dulles Airport is
supposed to open, and that is only a few miles from me.
Talk about differences in people. My oldest grandson knew every dinosaur by
name by four years of age. In fact he corrected a man at the Museum of
Natural History who told his kid that the dinosaur was a brontosauros, Mitch
told him (in a tone that said stupid) that it was a stegosauros. Yet my
yougest grandson always wants to go the the American History where they have
race cars, antique cars, and trains. I have to almost force them to go to
the Air and Space Museum until I promise an IMAX movie. All the grandkids
like the zoo.
Of course if everyone felt exactly alike it would be a dull world.
Take care, Bill and Charlotte

Bill,
I am in Evansville, Indiana now so I can relate a
little to bigger cities. As far as softball, I agree,
we are in a big league here also and there is a lot
more things to do than in NW Arkansas. I just broke my
ankle Tuesday playing softball, so maybe I should have
stayed in Bella Vista, Arkansas where things were much
slower (smiles).
I think there are goods and bads in every situation
and every place...some times you just have to look to
find them. Hope you have a great day. :-)
Byron

=== message truncated ===

Waverly,

Medicare will pay for a hospital bed if your doctor prescribes it. They will generally not pay for the Kraft-matic type beds as you can not attach hospital type grabs, sides, trays, pumps, etc to them.

On the pain, I would ask for a referal to a chronic pain specialist - neurologist normally. Pain is not usually an early MSA problem. Charlotte is having pain from the dystonia in her hand and the specialist is going to give her Botox shots to try to help on July 30th.

You do not want to become addicted to Percocet and NSAIDS.

Take care, Bill and Charlotte

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

Hi all,

I am not familiar with all of these items, but here are some sites to check out courtesy of George Relles and others:

http://www.spinlife.com/home.cfm
http://www.majorsmedical.com/majorsmedical/default.asp
http://www.galaxymall.com/furniture/liftchairs/
http://www.ElectropedicBeds.com/Lift-Chairs.html
http://www.electroease.com/
http://www.accessusaonline.com/davismobility/index.html

We deal with a company that handles mostly Invacare products and have been fairly happy. I do feel that our hospital bed sides should go a little lower, but since we added the foam mattress pad it seems to be high enough. We do not have a lift chair, so maybe someone else can answer about lift chairs.

Take care, Bill and Charlotte

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

Hi Byron,
You see I'm a city guy and miss things like museums, the zoo, choice of many
doctors, theaters, etc. :o) Charlotte and I used to fly up to New York
every November for a weekend to see a Broadway show, the Rockettes Christmas
Show and do our Christmas shopping. We loved amusment parks, Disney World
and boardwalks at the beach. Mountains are great for a vacation, but the
Ozarks (and I was born in St. Louis) do not compare to Grand Canyon, Bryce
Canyon and Zion or even Rocky Mountain National Park. The St. Louis
Cardinals are still my favorite baseball team and their zoo was great - I
haven't seen it in about 50 years. 60 miles west of me we have the Shenandoah
Nat'l Park which reminds me of the Ozarks and is beautiful with the green
hardwood forests (something the southwest does not have).
My mom loved that atmosphere of the Ozarks and lived at the edge of the
Shenandoah the last 20 years of her life, but it is too tame for Charlotte
and me. Us "city folks" just like lots of diverse stuff to do. Playing
softball is more fun to me than sitting watching the neigbors walk by. We
have a league of about 500 men on 27 teams all over 50 years old. You don't
find that in Arkansas :o) It takes 13 ball fields to play the games.
I would like to have a small garden, but my lot (1/4 acre) is too shady for a
garden. That is one thing I had to give up - my mom had a 1/4 acre garden up
to the summer of 1995 (she died in 1996). But mom was happy reading a book
and doing things with her neighbors (like fixing their dirt road :o) I
prefer to pay government workers to fix my roads :o) Different strokes for
different folks :o)
Take care, Bill and Charlotte
==============================

Dear Waverley,
I'm sorry you are having so many problems. The pain sounds miserable. I
wish I could say that I have some good practical experience with some of the
areas you ask about. I don't. Can you get any relief from the neuralgia
with heating pads? What about massage? I had a reflexology foot massage a
couple months ago that made my whole body feel really good. I know you are
dealing with so much more here, and I can't even imagine what those of you
with MSA and other diseases must go through.
I hope you will hear from your neurologist soon and will get some relief.
Thinking of you,
Cindy V.

Byron,
I'm so sorry about your mom. You're right about the
lack of doctors there who are knowledgable about MSA.
My father has a neuro. in Fayetteville, but, by his
own admission, he knows almost nothing about MSA. He
referred my dad to Mayo, where he was also dx.
Where in NWA did you live? I grew up in Springdale and
graduated from the U of A in Fayetteville. My parents
still live there and I go back at least twice a month.
It's changed so much since I moved away in 1987. It's
growing a little too fast for me. Do you still have
family there?
Melanie in OK

Waverly, when my brother and I were reviewing some information recently we came upon an article about degenerative brain disorders that seemed to suggest that hypogycemia played a role in these conditions. Upon reading that, he recalled that he had been having hypoglycemia prior to the onset of his MSA symptoms and was even tested for hypoglecemia -- which he did have.

Just a thought.

Jerry Cash

Hi Janice,
Contact the National Ataxia Foundation at naf@... and tell them
of your situation. Ask if they can direct you to an ataxia researcher
who will test your DNA for free. You can have it collected and
couriered to them.
Take care,
Pam

I have three questions for anyone who has experience with any of them:

The relaxomatic type of bed seems like a practical investment for a MSA patient. I have heard mixed answers about whether Medicare pays for it. What about other insurances? Does anyone have any experience with such a purchase? ( I know they are terribly expensive)

I know I am all uncomfortable sleeping practically sitting up and additionally told to raise my legs (to avoid clots in fluid pooled legs) So much for side and stomach sleeping.

My second question is about hypoglycemia: I have always had it but it seems to get far worse at times and I was wondering if anyone else experienced this complication with thier MSA and what they did to aid it. I can't seem to get enough sugar or salt in - and I can't eat anymore than I do and as often as I do. And I eat the proper hypoglycemic diet.

My third question is about polyneuropathy / neuralgia. I have had it so extremely bad lately and the 1200 mgs of neurotin are not touching it. The neurologist is still not getting back to me nor my primary (it has been over 3 weeks) and we are at a loss of what to do. NoPenn doctor seems to have the answer so I am asking for anyone's experience. We could add depakot (spelling?) or up my neurotin (neurotin has similar side effects.) It is like Chinese torture and crying bad. I can take percocet at night and rely on simple NSAIDS all day.

Thanx

Waverley
Gee Bill with the long subject line, I feel like we're playing tag
your it.:o) Guess it's my turn now.
Your daughter maybe adopted, but they learn from examples.You did say
your were a grumpy old man.
We don't smoke here either and never let anyone smoke in the house.
It's been the rule here forever and all our family knows it, so they
smoke outside if they need to.
Our bed is to high to get blocks under it enough to rise it high
enough for Fred to breath right. The bed is at my hip height now. If
we put the blocks under it to rise it, I'd have to get on the roof
and jump on the bed , to get in it to sleep. With silk sheet's and my
silk pj's, I'd end up back on the floor, At that rate I'd never get
any sleep and Fred doesn't want to use the blocks to rise it, said he
sleeps better in his chair , the way John does.
I know I'm a worry wart, but one of us has to be.
Take Care and thanks like always
Vera
If you do not wish to belong to shydrager, you may
unsubscribe by sending a blank email to

I have to agree with Melanie, I lived in NW AR for 12
years. Unfortunately, the doctors that are there know
little about MSA. My mother suffered un-diagnosed for
three years before she finally went to the Mayo clinic
to be diagnosed. Since her symptoms were classic, it
is sad that she went through so many tests and
mistreatments before she knew the truth. Some doctors
even told her that her problems were all in her head.
That seems to be the sad part of this disease. She
died about a year later.
I would like to also add that Vera's original email
said that her sister Barb was in AK. I don't know who
got off track but AK is Alaska not Arkansas. :-)
Byron

Hey! Watch yourself! I grew up in NW Arkansas and I
still consider it home. Most of Arkansas is absolutely
beautiful, although I'm not fond of the Little Rock
area. NW Arkansas in particular is a lovely place to
live. The people are so nice and it's just beautiful
there, especially in the spring and fall. Apparently,
many other folks agree because NW Arkansas (from
Bentonville to Fayetteville) is the fastest growing
area in the entire country.
PIG SOOIE!! :-)
Melanie in OK

Barbara:
UTI strips are little strips of treated paper that you dip in urine to
tell if you have a UTI. I used the ones we had for Ken to diagnose one for
myself. Yes, they work for both men and women. You get them at your local
pharmacy. They are called UTI diagnostic strips.
Barbara Smith

Melanie,
Take your dad to a Wal-Mart and see how he does handling their motorized
carts. Usually you have to rent to buy from Medicare also. While some
people do fine in a motorized chair or scooter - others can not handle them
(like Charlotte). An occupational therapist can help you a great deal with
chair fitting and accessories.
Some "extrs we got are:
a special back and harness to keep Charlotte upright in the chair
A special seat which adjusts it's self to fit her bottom
Foot pads that adjust
A tray for eating.
For me - detachable wheels - but it is still a pain to get up and down steps,
as it takes three trips to get it out to the car and then reassembling it.
We did get the run flat inserts in the wheels. Medicare and my insurance
paid for about 75% - we paid for the special wheels, tray and detachable
wheels.
You may want to rent a standard collapsible w/C for a month to see what
problems you find in moving about the house - they are about the same size.
You do want the W/C to be comfortable if he is going to spend much time in it
as Charlotte does. The motorized chairs don't seem to be made for comfort,
from what I have seen.
Take care, Bill and Charlotte

Vera,
I haven't been on the old computer and I just realized that this computer
does not have her sister's IM Buddy name on it, plus this computer has my
Buddy name as bwerre. I'll log on the old computer later.
I'm not sure I understand your email, let me get this straight - you live
live in Southern California and you WANT to live in Arkansas???? I have been
to both states (granted I have not been everywhere in either) and I have not
been to Little Rock. most of my time was in NE or NW Arkansas. NE Arkansas
reminds me of West Virginia - nice place for a visit. LA did not impress me
much either, but I was only there for one day with my aunt and cousins. They
lived in Burbank which was nice. Charlotte and I drooled over San Diego -
Charlotte wanted to live on Whalewatch Way :o)
However, since we could not afford that, we are happy in this area. We have
the Smithsonian, the National Zoo, the Kennedy Center, Wolf Trap Center for
Performing Arts, historic sites everywhere, monuments, the beach is 2-3 hours
away, the mountains are a hour away, the falls of the Potomac River are 15
minutes away, New York is 55 minutes by air (another great place to visit -
but not live), and best of all - the President and Congress are local phone
calls :o) We also have extremely good doctors and healthcare in general.
Food and living are a little high here, but I bought my house so long ago
that does not matter :o) I owe as much as I originally paid for my house
(in 1972) and will burn the mortgage in 2005 or 2006. My taxes are more than
my interest at this point.
My grandkids all live within 30 minutes of me, in fact two live within 5
minutes of Manassas National Battlefield Park. All of our family live within
2 hours driving time.. Dulles Airport is about 5 minutes away, so we are
close to the world by air. Yet we are not in the flight path and since the
Concorde no longer flies - we rarely hear an airplane. Traffic here is
almost as bad as the L.A. area, but since I am retired - I avoid rush hour.
We have access to almost every major store and restaurant :o) except Sonic
drive-ins and Morrison's cafeterias :o)
Now I know that you must have much of that type of facilities near you PLUS
Disney Land. You don't have to go far to the East to have remote areas. I
guess you do have to go quite a way north to find green forests. Barbara
Smith makes me feel bad talking about Yosemite as we never made it there or
Yellowstone. But remember - the grass always looks greener somewhere else.
Take care, Bill and Charlotte

I don't know how you do it .... but that site for the opening lines is a
real winner .... I haven't laughed that hard in a while ... I think we ought
to have a contest for which ones we liked best ;-]
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia

Hi All!
I think my father is finally going to get a
wheelchair. He has had several very bad falls lately
and he's scared he's going to (in his words) "do
himself in."
Any helpful advice from those of you who have
purchased a wheelchair? Is it best to rent one for a
while before letting Medicare purchase one so he can
decide what he wants? Does Medicare pay for a "custom"
w/c. Should we look at electric? What about the
"scooter" type?
He's also going to get a walker to use around the
house. Are all walkers created equal?
Thanks in advance for any thoughts!
Melanie in OK

Bill:
I talked to Barb this morning, she's been on aol ims under her sister
name. She is in Ak until next week. The one place I just love to
live,
Take Care
Vera

Gee Bill with the long subject line, I feel like we're playing tag
your it.:o) Guess it's my turn now.
Your daughter maybe adopted, but they learn from examples.You did say
your were a grumpy old man.
We don't smoke here either and never let anyone smoke in the house.
It's been the rule here forever and all our family knows it, so they
smoke outside if they need to.
Our bed is to high to get blocks under it enough to rise it high
enough for Fred to breath right. The bed is at my hip height now. If
we put the blocks under it to rise it, I'd have to get on the roof
and jump on the bed , to get in it to sleep. With silk sheet's and my
silk pj's, I'd end up back on the floor, At that rate I'd never get
any sleep and Fred doesn't want to use the blocks to rise it, said he
sleeps better in his chair , the way John does.
I know I'm a worry wart, but one of us has to be.
Take Care and thanks like always
Vera

Berit,
Welcome to the list. You write very good English.
You asked "We've tried some of the medicine you've described, but they had a lot
of
subordinate effects (is that the right English words?)." Actually that is
close, it is "side effects" that we use.
It sounds as if your husband is doing well for a person who has had SDS that
long. Does he have any movement problems or swallowing problems?
Take care, Bill and Charlotte Werre in Herndon, Virginia, USA

Hi, Karen. Welcome, though sorry you are here.
My mother Joyce (71) had MSA-- she was diagnosed with PD and then 2 years
into it rediagnosed with MSA; she died within two years of that diagnosis
from complications.
When she received the PD diagnosis, I printed more material than she wanted
and arranged it by categories into binders and sent them to her. When the
MSA diagnosis arrived, I wasn't as anxious to inform her because the
prognosis was so poor. However, she turned to me one day and asked about her
prognosis. I stated her doctor's line at the time (which is true, after
all): This is individual and you cannot come up with such a prognosis.
However, I read the literature and knew that her form of MSA (SND) had a 2-8
year prognosis. I also told her that the drugs weren't going to be as
effective as they were for someone with PD and that MSA was more
progressive.
Then I decided to send her a one page piece on MSA that had all the info
right there. She had asked and she deserved to know. She never mentioned it
to me. I think dealing with the disease on a daily basis was consuming
enough. And you really don't know where the disease will bring you. I
believe my mother's case was hastened by her refusal not to continue walking
when she had no balance. She fell many times and broke many bones. Spent her
last two summers in rehab.
Has your dad asked about MSA? I think if he has expressed an interest in
knowing what it's about, then he's entitled to know it all (actually, I
think he's entitled to know all of it in any case).
Good luck, Debbie

Vera,
Nope, that daughter did not inherit grumpiness from me - she's the adopted
daughter.
I don't want her smoking in my house - we have never smoked.
Now if you give Fred a big hug and a kiss - I'll bet his BP will go up :o)
Take his BP in the morning before he gets out of bed and then soon after he
sits up on the side of the bed. Then forget it for the rest of the day -
unless the doctor tells you to take it.
Take care, Bill-Bill and Charlotte

Barb:
When I was talking to you this morning and you asked me about Anne. I
knew I wrote the med that Tony said the doctor had her on, but
couldn't fine it. I came across it now , so just wanted to tell you
it was Zithromax.
How was shopping at Wal Mart? Did you fine anything?
HUgs
Vera

Jim:
I knew you guy would stick up for each other. You big strong men
picking on little old me.
Wouldn't the walker break his fall if it was glued in front of him?
Or if he fell backward, couldn't I use it to hook something to it ,
to pull him up:o)
See I'm thinking like a man now.:o)
Take Care Vera

Sorry Jim, don't look at me, I can't even read my b/p book right.
I'm leaving it all to you men, so you can have something else on your
mind. :o)
Take Care and good luck
Vera

Vera,
Yes, all men or alike! We all think logicallly :-)
For instance, if you glue Fred to the walker, you will not only have to pick
up fred but also the added weight of the walker because he is going to fall
anyway :-) LOL
God Bless.
Jim Stark

OOOOOP's Bill , you were right and I was wrong, wrote down the right
b/p on Fred only tolded you wrong. Didn't I tell you I needed a pot
of coffee this morning? My eyes were only 1/2 open, and I'm sticking
to that. His b/ was 108/72. I know I need to be beat with that wet
noodle. I knew it was still around.
Take Care
Vera

Hello All.

HELP!!!!!

I wrote Pam about a form to standardize all our bios. She is very busy and suggested I come up with a form. I am not very good at this sort of thing and am wondering if anyone in the group might have an idea for a member Bio form.

With a form, all our bios will be the same for each of us. I think this would make the information more manageable.

HELP!!!!!

God Bless

Jim Stark

Timo,

I read your message to Bill and went to the web site. Excellent site.

Thank you Timo. We can always use information like this. good work.

God Bless,

Jim Stark

Hi Bill, found this page. Interesting for you?

http://sites.netscape.net/taimurzaman

Hi All,

God Bless,

Jim Stark

Hello!
I've been reading your letters for about three weeks now, and my heart is
bleeding for you.
My husband has been diagnosed with Shy-Drager for 15 years , but the
symptoms started more than 20 years ago.
He is still able to drive, because the BP is absolutely normal when he is
sitting. When he's standing the BP falls very fast, and he usually must
squat on the ground when he meets people he wants to talk to.
We've tried some of the medicine you've described, but they had a lot of
subordinate effects (is that the right English words?).
There is only one neurologist here in Norway that knows anything about this
disease, and he tells us that only about 8 people in our country, has this
diagnose for the time being. Therefore none of the specialists are specially
interested in these cases. The dr. told us to try to find out ourselves what
could work, and we sure have tried and failed lots of times.
We've ended up with no food until about three in the afternoon. No coffee or
real tea. We use lots of salt in the food, and he gets a drink with
liquorice-root "tea" in the morning. After some times use, he got problems
with diaries. We then added some blueberry-syrup, and that seems to work.
In the morning, he still has problems with low BP, and doesn't walk around
so much, but in the afternoon he's able to do some working in the garden -
if it's not too hot or too cold.
Thanks for all the good information! I'll hang around even if it takes me
some time to read all these medical English language, and I'm a full time
worker.
Berit

Hi Karen
Welcome to the group. You asked if anyone else was on Mirapex. My
husband Fred is on 1/2 of one three times a day, along with simemet
Cr and eldphy.
Maybe right now isn't the best time to tell your dad what the MSA is
all about. I know Fred took it real hard when he first found out and
said something to our doctor (MD) about it. I think the MD said
somthing to the Neuro about it, because most of the time he tells
Fred every little and I have to push to fine out the if's and what's.
I do think that your dad should be tolded sometime, but that is me. I
really think that he will know something soon, as it has away of
letting you know.
Take Care Karen
always Vera

Ok! well I guess I will go first.
My name is Vera and I am the caregiver for my Husband Fred , who was
DX in Feb 98 with PD and then to the MSA Oct of that same year.
Really Fred had,had the MSA for the year before the DX, but all the
doctors tolded us that they couldn't fine anything wrong with him.
He'd fallen at work over a buffer and hit his back. Lost the strenght
on the left side and then about four months later started a tremor on
that same side, so that's when we started wondering what was going
on. Then his handwriting started getting smaller,voice softer,and we
started the urinary incontinence , now his having bowels problems
along with many other things. Fred is 60 and I'll be 55 next
birthday. We have two boys ages 28 & 27 , and then one girl 25. The
best times I have is playing with 5 of the eight grandkids I have.
Fred is now using a walker( well his suppose to put it that way) and
a w/c.
His on sinemet cr, selegiling, nitrofuran cr, clonazepam,proamatine,
& mirapex.
I found this group a year ago when the doctor's didn't know to much
about it and I couldn't fine anything in most of the books.
The hardest part about Fred being sick , was his family was in
denial. After 4 years of the denial, I think his mother is coming
around. Which will be a big help for me, not having the fight to try
and do the best for Fred.
Glad you all found this group also.
Take Care
Vera

Hi Vera, great idea about posting our bio's again. Whoever feels like
starting should just start a new subject and maybe put "BIO" in the
subject line so we can spot them easily. Your's could be:
"BIO: Vera & Fred "
Hugs,
Pam

Bill:
Do all men think alike?:o) He was just watching a movie on T.V.when
the b/p went up. Men! what are we going to do with you?
Yes! I had his arm the way I am suppose to. Put it where and how I
always do. See I'm learning .:o)
Did get ahold of the Neuro and he called back. His going to send an
RX for some Jobst Soxing, and incease Fred's sinemet cr. He was going
to put Fred on florinef again, but his feet swell with just one, so
that is why he is going with the sox.
following him around today with the walker. He tried to fall when he
was 1/2 sitting, the leg gave out on him. If I hadn't of been behind
him he would of went all the way down and I would be trying to get
this 240 lb man up again. I tolded him I was going to super glue him
to the walker if he doesn't use it. So he took it from me. Guess he
knew I wasn't joking. I wasn't.
Did you think your daughter wouldn't take after you? You tolded me
once you were a grumpy old man. Like father , like daughter :o)You
could give her back the smokie's, but would you:o)
Take care
Vera

We are not sure at this point how long my Dad has had msa. He has, as
I do family tremmors, Which, From what I gather, is one of the
beginning signs of shydrager. In the beginning was the drop in blood
pressure. He would pass out when ever he stood up. After breaking his
wrist, the doctors did tests and put in a pacemaker in 1996 which has
helped a lot. In August of last year, his lung collasped, and he was
in intensive care for three months,but a mircle happened and we still
have him with us.
I really appricate all of your emails. My Mom refuses to tell him the
truth about the shydrager. And he doesn't have a clue as to what will
happen to him. The doctors seem to side with my Mom that the less he
knows the better he will be. I totally disagree.
At this point and time he is having trouble with his lower leg and
upper arm strength. The doctor put a needle through is ankle and Dad
did not feel it. Another sign. He is walking by the strength in his
upper thighs. I'm so afraid that he will fall and cause himself
serious injury. When he walks he tends to run (leaning forward)very
quickly, and he has to be stopped by someone or something.
The doctor has put him on Mirapex, so far so good. Is anyone else on
this medication?
I love hearing from all of you. Please feel free to email me at
waterfall53@.... My name is Karen. Again thank-you all so much.

Hi Jim and All,
I just finished "Saving Millie" and would strongly recommend it to everyone.
It's a wonderful story and very well written.
I am still in amazement as to how much Mark and my lives mirror Morton and
Millie's right down to holding up one finger for "yes" and two fingers for "no".
The bathing, dressing, eating, speaking, etc. are so similar that it's scary.
I found reading the book as helpful and enjoyable as being with all of you on
this support site. I've read several reviews of the book, some discussing what a
sad story it is and that it made them cry, but, it didn't make me feel that way.
I did notice that towards the end of the story Millie did have a PET scan that
showed Shy-Drager Syndrome but it was not discussed much.
Take Care,
Judy Whittaker

Vera,
Fred better hide the crazy glue :o) What was he watching on TV when he was
sitting in the chair and the BP was 155/90 :o) (BEG)
Don't sweat the BP, all of those seem within an acceptable range. Actually I
question some of the readings like the 108/80 reading. Are you sure you are
positioning the cuff correctly? A slight difference in cuff position can
change the reading. Do you put his arm about level with his heart and rest
it on a pillow or something when taking the BP?
Take care, Bill and Charlotte

Ordering information and more reviews about the book at Amazon.com
http://www.amazon.com/exec/obidos/ASIN/1586480375/qid=995470851/sr=1-1/ref=sc_b_\
1/002-7405418-7140805

Hello Bill:
Getting back to you, but not sure I'am awake yet. To many up's and
down's last night and no coffee yet.Where is that pot when I need it.
Fred is really on a yo-yo lately. His b/b was 155/90 last night
sitting in the chair at 9:30pm, at 1 am it was 136/79 sd ,97/64 su
then at 4am it was 97/64sd ,67/50 su, 5am it was 108/80 sd, 80/54su
and now at 7:30 it is 133/84sd & 92/67su.His temp is 96.5 his norm.
If he lays on his back it will be 157/70. I don't think the pro-
amatine is working for him or something. This isn't the norm for him.
Things have changed alot since he had his hostipal stay and the
pneumonia and yes I am on him about the falls and his ending up in a
hospital with a broken hip. If he has heard me tell the story of Mary
Strongs husband Warren and his hip and being in the hospital for
weeks once , his heard it a 100 times, but kids think they know it
all , and never listen and that seems to be Fred.I'd glue his hands
to the walker if that would work, but I wouldn't know what to tell
the doctor next time we go.:o)
His been doing what John Fisher is doing, his sleeping in his chair.
He does better in they he said and it seems to help him.
Going to call the doctor this morning and tell them what is going on.
See if something can be done.
Heard a woman talking about her mom telling them , that she would
beat them with a wet noodle if they weren't good and asked the other
woman haven't you ever heard that. I just smiled and wonder who has
our wet noodle now.
Take care
Vera

Hi Jim,
Thanks for taking the time to review this book for us. I'm definitely
going to look for it soon.
Hugs,
Pam

I didn't see any mention of problems with regulating blood pressure
mentioned in the article on Dudley Moore. I know MSA/SDS is also referred
to as PSP, even so does mean that not all PSP patients have the autonomic
disfunction that we associate with MSA/SDS?
Jerry Cash

Vera,
Have you tried raising the head of the bed to lower Fred's BP when he is
laying down? What is his BP sitting?
On the falls, remind him that many MSA patients who keep falling eventually
break a hip, and must be in a nursing home for quite a while to recover. Get
off the bandwagon on on his case :o)
Talk about grumpy!!!! My adopted daughter Rhonda has smoked most of her life
and has to go in to get a node removed from her throat today. She decided
yesterday to give up smoking - WOW what a grump last night!
Ave a g'day mate! Bill and Charlotte

please unsubscribe

Hi Pam:
I got a chance to talk to Verlene on the phone the other day. She was
asking me about many of the people on the group. I told her some, but
many I wasn't able to tell her about. I tolded her how we use to do
a bio every once in awhile. So I was wondering if we should do them
again, seeing that we have so many new people on the list and they
know nothing about us. What do you think?
Take Care
Vera

Hi Barb:
Was wondering what had happen to you. Most of the time you get back
to me, but with all the posting lately, started thinking you just
over looked my question in the list of many that you get.
I would really like to try and get Fred to some group , just to meet
someone that he can talk with. I know as a caregiver it's hard to
deal with this illness, but I also know that I don't understand how
Fred feel's living with it, I can only guess. I think it would do him
some good to know face to face other's that he can relate to. I'll
talk to him about the meeting and I will let you know if and when he
may want to go, so maybe we can meet there.
Fred had another fall today. He won't use the walker outside, the one
place he really needs to use it. This is the 4th time he has had a
fall and it's only because of this reason he has had them. Took him
to the doctor again to make sure everything is alright. Lucky once
again nothing broke. He said it's to hard to use his walker outside.
I keep telling him about Mary Strong husband Warren and how he fell
and had to be in a hospital for 4 or 6 wks because he had a break.
Told Fred that his been lucky so far, but one of these times his
going to break something and if he does at his age now, it will take
sometime to heal. If he ends up in a hospital for along time, he'd be
bed ridden after that , because of it. He said I was right, but I
wonder if that mean it's gotten into his head now. Been trying to get
a hold of his Neuro, His been having alot of Down time on the sinemet
and the b/p is going up. The Neuro had been gone on vacation and the
replacement won't change the meds till the Neuro see him.I called his
MD to get an ok to go to the Neuro, but haven't gotten that yet
either. The Neuro should be back now, so tomorrow I'm going to call
again and see if he will do some changes over the phone. I sure hate
these commitee that you have to get the ok from, when everything is
going wrong and you have to get the ok. I still don't understand that
one.
Ok! enough of that. I know I'm on my bandwagon again. Sorry.
Will get back to you about the meeting and let you know what is what.
Thanks Barb.
Hugs Vera

Hello all,

I would imagine many in this group has read the book about Millicent Martinez and her struggle with Parkinson's plus.

The medical establishment never puts an exact label on her malady, they say "About one third of Parkinson's victims have something vaguely known as "Parkinson's plus". Millie evidently has it, but no one knows exactly what, causes it, or how to treat it. Various complications of Parkinson's have been identified- multiple system atrophy, Lewy body disease, corticobasal degeneration- but none exactly fits her symptoms. Dr. DeLong later told me he thought her case sui generis- "Milly Syndrome," he called it".

The book is written in the first person style by: Morton Kondracke, Milly's husband, care giver and deeply devoted husband. He was at one time a political correspondent and a member of "The McLaughlin Group".

I am not going to say much about the book, as I am still digesting the story myself. I thought it would be difficult to read, as a victim of MSA/SDS, but it was not. It is a story both of patients and care givers should read.

The information is completely up to date, even mention of stem cell therapy, and gave me a completely different perspective of what a care giver goes through, and what the patient goes through, especially in the later stages of "the disease".

There is a complete and very frank chapter on the politics of medicine. For those of you who are not familiar with "the politics of medicine" you are in for a shock over what actually helps or hinders a medication or procedure from being added to the national protocol.

Some of you will find your own doctors and the leaders in research listed in the book.

This book is evidently going to be a great success. I called to see if the book store had it in yet. I was told they would called back when they have made sure they had at least one copy left. When they called back, I was told they had one left and they would save it for me. The day I called was the day after they had received 100 copies of the book. They sold 99 copies the first day.

If you are not interested in the book, I apologies for taking up your time in reading this book report. If you are reading it or plan to read it, I would certainly would be interested in your opinion of the book.]

With all the accidents, ailments, crisis's, and sorrow, there is a great story of a mans total devotion to his wife, as I imagine most of the care givers can identify with.

After reading this book, I think all care givers are heroes, with out a doubt.

God Bless,

Jim Stark

Hi Gloria,
Welcome to the list. We're all sorry you have to be here, but you
will find a great deal of support and helpful advice.
My husband Rob (now age 55, diagnosed with MSA 3 years ago) has had
problems with constipation which have been helped greatly by
MiraLax. He takes it daily (17 grams mixed in 8 oz of water) and
also takes Surfak, a stool softener, daily. This combination keeps
him pretty regular without making him gassy. MiraLax is a
prescription, and is the same compound, in a lower dose, used to
prepare the bowel for a colonoscopy.
Good luck,
Carol & Rob

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