Wiki articles

I am always amazed at the wealth of information that I
get from this group.
Do you know the brand your bed is? Did you get the
electric one that others have mentioned?
It sounds like your husband has similar symptoms to my
dad. My mother said that he talked long and loud last
night. He is a judge and was apparently dreaming about
a case. She said he held court for two hours, giving
attornies and the jury instructions. She said if she
hadn't been so tired, it would have been funny. She
finally moved to another room to sleep. He is going to
his internist on Wed and is going to ask about a sleep
study. Dr. Jankovic suggested that it would be helpful
for him. I suspect he suffers from sleep apnea, too.
She has also said that his tremors at night shake the
bed quite a bit. He really only has a tremor in his
right hand, but I guess it's pretty bad at night.
He also suffers from the severe swelling, but it
affects only his feet.
My mother plans to get rid of their king sized bed
(she's hated it for years) and will put the hospital
bed and a twin for her in their room. My sisters think
it's too soon for them to get my dad a hospital bed.
They feel like it will make him feel and seem more
sick. I think he needs it for convenience.
Thanks again for your help!
Melanie in OK
--- Charles and Marilyn Morris <morriscm@...

Thanks for the info... Johns temp is checked everyday sometimes twice. We
try to stay on top of it as we know how fast infections can start. We have
tried all combinations of meds and have been told that we could start weaning
but if it makes John feel better by staying where he is then by all means
stay. By reading all of your posts, I hope to be able to handle the rest of
the problems that John will come across.
John is all I have know since I was 16 years old and I will need everyone of
you and our kids to get through this. Our kids have been a God send but know
they have lives of their own so I try not to ask them for much. Son # 2 just
got back from Saudi on Friday ( gone 3 months) and it sure is good to have
him back.
Need to GIT and fix that lunch....Thinking of you....Donna

Maria,
Anne (many years ago) had some problems with the artery to the stomach and they
did a bypass to the stomach (and possibly the intestine) to get more blood flow
to those muscles. She also gets bleeds under the skin often which cause her
hands
to get blood red. Others have mentioned this also, so it is not totally new.
Charlotte has never had a problem with the PEG (other than it comes out now and
then and we have to replace it). Actually out doctor wanted the bed at about 30
degrees for feeding through the tube.
MSA patients often get tachycardia with infection, Charlotte did. Have you
talked or written Lita?
Take care, Bill and Charlotte

HI Bill,
So tell me about Annie's internal bleeding? I've been away so long
and I missed this list so much.
Yes, I'm still here. I have to admit it is nice to put on shorts just about
everyday. We did have a bit of a cold spell -- low 50's. HA, ha!
The doctor's up north felt that this would be an ongoing problem for
Dan. With the PEG there's a high possibility for all those opportunistic
fungal infections. I am so tired of asking the hospital personnel to elevate
Dan's bed at a 45-60 degree angle. The doctor has also posted it on file in
black and white but they forget. DAHHHHHHH!
So, I very nicely explain to them that his sphincter muscle at the stomach
does not work properly and if they could please keep the bed elevated. And to
please pass this request on to the night shift. well, lots of times I'll
drive down to Tampa twice a day and there he is....perfectly flat. It's so
annoying. I just repeat my request.
Back To Dan.
He started this internal bleeding in Nov and he's lost a lot of weight, down
to 125 lb. from 155 lb. in Sept. They modified his intake to include more
lipids and with the start of his high fiber PEG feedings I'm eager to find
out how much he weighs now. I noticed they're also hydrating him.
This POTS diagnoses really interests me, Dan does get tachycardia. As a
matter of fact in the past this would set off a bout with reflux and before
you new it he would start bleeding internally.
Nice to be back. God bless you. Love Maria

Jolene, Saved your letter and apologise for reply delay. I have Jan at home
because facilities tried here are far less efficient than my care. He
sleeps more, cries out more, is restless and cannot move and requires
constant suctioning. Sad affair. Please tell me about your husband's
viral encephalitis. Jan has been exposed to animals and numerous
chemicals. We explored zoonotics in the 80's when he could still deny
being ill. One of these days brainstorming and cumulative comparisons may
identify a cause conducive to a cure. LA Louise , more floods, no power
yesterday and a gloomy morning.

Maria,

Are you still down in Florida sunning yourself, while we are all freezing up here?

[INLINE]

Get back to work :o)

Have a good day, Bill and Charlotte

P.S. Anne has had the same problems as Dan and had a bypass put in to get blood to the stomach. She now needs to have it replaced.
=================================================

Hi Earl, just wanted to commend you on your care of Iris. I am always in
awe of the men who tackle this task. I know the women work just as hard,
but in my mind, women are "born nurturers" and men are "fighter-providers"
It warms my heart when I see this loving, tender side of you men.
I went to a support group meeting for PSP yesterday, and the guest
speaker was a Speech Therapist. One of the things I picked up from her is
that watery eyes are often a sign of silent aspiration. She said if that is
happening, you probably want to get a swallow test done, as they often don't
choke, but are aspirating a little food or water, each time they intake
something
Just thought I would pass that on for anyone who may want to check that out.
Bernice/ cg to Ken 73/dec. 06-23-00
Ohio

Hi Mike,
My name is Maria Ramm. I've been off the list for a while, No computer.
Anyway, My husband, Dan, and I are here in sunny Florida. I brought him down
here Sept 14, 2000 to rehab him and avoid another nursing home. To make a
long story short. He's been in the hospital since DEC 12, 00 going on 4
months. He's had massive internal bleeding in the esophagus. They've had him
on TPN feeding since Jan and just resumed the PEG feeding this past week.
Things are actually looking up. He seems to be regaining his strength.
I'm interested in This POTS diagnoses. I just got back on the list and was
hoping you could tell me more about it. Thanks. Maria

Eva,
I wish I had great words of wisdom for you. I am "new"
to MSA, as my father was dx. just two months ago. It's
a terrible disease, and it's so hard to watch my
parents struggle with it.
I hope you, your mom and sisters have a wonderful time
in Paris. It sounds great!
Melanie in OK

Have you tried dimming the lights or giving her some dark glasses? My Ralph's eyes were very sensitive to the light.

Miserable and they get so sore from wiping them

Hang in there. You are not alone.

Barb in Arlington [INLINE]

Hi all,
It's been a long while since I have posted here or read any thing.
To recap for anyone who has joined this group since I last posted. My
father is the one with MSA and my mother is his full time carer.
He was diagnosed about 6 years ago, just over a year from the onset of
symptoms. He had managed to hold off the progression with chinese medicine
and acupuncture.
But lately, (over the past month) his deterioration has been noticeable and
very hard on my Mum.
He appears to be becoming more confused, disoriented. Often (nearly every
night in fact) attempting to get up in the middle of the night to go to the
toilet but he has been using a convene for a while now, saying that he was
going to take a bath, or that I had called him for dinner (I don't live with
them). His motor skills are not good and so he often is found calling out
names for attention in the middle of the night as he is unable to get up off
the floor.
His motor skills have really gone downhill, only 2 months ago, he was able
to slowly walk about with some support and the use of a frame, but now, he
can hardly straighten himself up in his chair.
His breathing appears to be less easy...he often rasps while breathing, his
speech is a lot quieter, and when he tries to speak up, he often runs out of
steam (breath!) part was through a sentence.
He is drooling quite a lot now, he struggles a great deal to remain seated
upright and has recently taken to leaning to his right (including his neck
muscles). He has started having bouts of aggression which he is taking out
on my Mum and she has been suffereing from not getting sleep, her health is
starting to suffer from the strain.
We've had to get him into hospital for tests and observation and now he is
at a respite centre and my sisters and I have insisted on packing my Mum off
to Paris for a week to be with her sister and other family..just for a rest.
I'm not sure what other symptoms follow from what has happened already, but
considering the latest trend, I would not be surprised it it happened in
short succession.
I'm not sure why I posted here as I haven't any questions to ask. I
probably needed to just get it off my chest and if anyone can help me
regarding what to expect then I would be grateful.
Anyway, thanks for listening,
Eva
UK

To all:
I consider this group as one big family. Each person has someone that
is suffering from MSA and other physical ailments and it is so nice
to be linked to people who understand your problems and try to pass on
every bit of information they have. This information, you can't get in
a doctor's office or by a nurse. They don't understand what the
caregiver or the patient goes through on a given day. Thanks for all
of your information and insperation you pass on to everybody. Its
great. You have helped me out with Iris by letting me know questions I
have asked from time to time. She is havaing a very tough time this
day with her eyes, as they water like a faucet. Thanks you all
Earl

Your son sounds as though he is loving and generous. Be proud of the care
he provides for you and his Dad. Marilyn in TN

Hi Tricia:
I was touched by your message regarding your recent
diagnosis of MSA. As I read your message, I could
identify with your husband. I find it difficult to
adjust to Bill's illness . He was diagnosed in 1997.
Never had a sick day in his life. Then "fuh, get about
it" as we say in New York. Our life has never been the
same. I admit I needed help to start dealing with our
new life. It takes time. I got help from a local
support group for caregivers. That group and this one
have been real lifelines.
Bill and I planned to retire to a beach house in the
Caribbean. My plan included Bill taking care of me
since I was the one with arthritis and hypertension.
I didn't learn to drive because he drove. Bill would
retire two years before me, and go and prepare the
house. Then, I would retire and we would drive away
into the sunset( remember that car commercial a few
years back) . With an adult son, we only needed to
enjoy retirement.
Then, the day after Christmas in 1996 Bill had a
syncope. I don't need to go into details about the
hospital and medical visits before the diagnosis.
Retiring to the Caribbean is now not possible because
Bill can't take the hot weather.
You expressed so well what Bill must have felt. Your
message has given me a glimpse of what he must have
felt.
We've been married 37 years, and have always done
things together. We try to take short trips now.
And, our adult son has moved back home to help out.
We go at it day by day. But, there are bad days.
That's when messages from this group keep us going.
Regards,
Aida and Bill

u near toledo??go to dr. grubbs.

FYI .... I can't find the med. article but....
WATER is the best balancing act for POTS .... lots of water adds volume to
the blood .. not salt or meds ... just drink water ..
I have found drinking lots of water in the afternoon helps balance out my
b/p
cheers
sheila

I have not been diagnosed with Shy-dragers. However I do have POTS along
with other autonomic problems like not sweating. I also have an altered
sense of taste and smell. This has been going on for 2 years with a waxing
and waning of symptoms. In the last year or so I go through stages of
muscle rigidity, it is very difficult to stand up or sit down. It is like
my muscles don't want to flex. In the last several months I have started
to have trouble swallowing at first mostly when taking my meds in the
morning. Then when I would drink liquids and not consciously be thinking
about swallowing I started to have some choking. Last week for a couple of
days I lost my balance several times. I didn't fall but unsettling none
the less. When I was diagnosed with POTS (10/2000) I added liquid and salt
to my diet. I have gained 18 lbs since then mostly in my abdomen, When I
have mentioned this to my doctor he just shrugged and said I must just be
sensitive to salt. I just started florinef so I don't know if it working
or not yet.
I have been trying to find an autonomic specialist in Columbus who actually
understands what I am saying. I just want to figure out what is what,
especially related to the autonomic stuff. What I find weird is that this
seems to go in cycles. I felt good at Christmmas and into January but the
last 6 weeks have been pretty crummy. I think the POTS is what gets the
worst. Although the balance and swallowing were a concern last week.
So here is my question: Does this sound like what you all go through at
all? I am thinking it isn't MSA or Shy-Dragers because I do feel OK for up
to 2 months at a time. Not totally symptom free but pretty decent. I
haven't seen anything in what I have read that addresses the variability
and cyclic lessening of the symptoms so I am guessing it probably something
else.
I do plan to call the autonomic lab at Ohio State to see if they can
evaluate what is going on. I am starting to feel slightly better the last
few days so I may wait until I start the next crummy cycle. Any thoughts
would be appreciated.
Mike

Mary Ann,
The two types of stem cell are totipotent and pluripotent. The egg is
totipotents anthe first cells formed after fertilization are totipotent. Th
blastocyst is when the inner cells start becoming pluripotent. At that point
the totipotent cells would become the placenta and the pluripotent would become
all the other cells in the new fetus IF the blastocyst attached to the womb
wall.
Take care, Bill and Charlotte
==================

The pictures of your mother and her room are beautiful. She is so fortunate to have you.

Take care, Kathy

Thanks Jim.

I appreciate your kindness.

Take care, Kathy

Hi,

John and my husband have symptoms almost identical. Dave also has left sided weakness and problems with balance. on good days he uses a cane, his balanace is so bad that I always walk along side of him to help with balance. On bad days, he uses his walker and wheelchair. His swallowing hasn't got to the point of pureed foods yet but I can tell a difference in his speech and his abillity to keep food and liquids down. He has reflux real bad and none of the meds has helped. He also has an indewelling cath and in the last year has had frequent UTIs. I started him on cranberry capsules and encourage him to drink lots of water.

This is a wonderful group. I joined a few months ago and have learned so much from everyone here. Sorry you have to be here. Take care of yourself.

Kathy

Hi all there are four of us in the chat now!
If you have Netscape IM click this link
http://home.inforamp.net/~pbower/msachat.htm
Then click join my chat

Hi Bill;
you wrote:Note - there are currently 210 different specific types of cells
which make up the human body. It takes chemicals from the womb to make all
but two of these cells.
Are are these two cells, Stem cells and Blastocytes?
Is a Stem cell formed from the Blastocyte, or Visa versa?
Mary Ann -

Jim, I am printing some of the info from the web to take to the doctor next
appt to see if he thinks it might help. Vera and Barbara, thanks for your
input. Al goes to V.A. so they may not even do this treatment. I will also
ask about the Collagen. I think Al was their first MSA patient, I think they
have another one now. The Neurology Clinic has some knowledgeable doctors,
his primary care doctor has had to do a lot of research on the disease! He
has learned a lot since Al was dx a year ago. Good luck to all of you, don't
know what I would do without you!! Hugs, Pat

Mary,

Medicare has guidelines that your Congressmen helped add to the laws. Therefore, your doctor needs to add the specific terminology that the law requires such as a specific reason or set of symptoms for the extra money and assurance that the motorized chair will help meet those needs. Since your Congressman has the specific guidelines and the legal definition in front of them, they are in a better position than your doctor to write the statement of need, who is not a lawyer. Your doctor still needs to sign the statement of need.

Many companies that sell the chairs just ask the doctor for a generic pescription for a wheelchair, then have an occupational therapist look at your needs, write the statement and send it back to your doctor, who has to concur with the needs accessment before signing off on it.

Take care, Bill and Charlotte

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

Vera:
I had frustrations getting an electric chair from my husband. Everything was
on go..Dr. and physical therapists signed off on it. Actually they suggested
it. The medical suppy company submitted all the paper work and everyone was
most positive on the request. No hitches. Wrong! After several calls to
Medicare I knew that working thru them was going no where fast. I called our
U.S. Representative and enlisted their help. We got the electric
wheelchair. Unfortunately, these things are so time consuming and time is
what we don't have. Perhaps enough calls to our State and Fed. Reps. will
eventually help us all through the quagmire of
unnecessary and abusive work we have to go thru.
Hope there are less complications in your life re your medical needs.
Mary

John and Donna,

Remembr that infection will drive a MSA patientdown in a hurry, so always beware of it. Uriraty tract infection is very common in MSA patients as they have trouble swallowing liquids more so than soft foods. Infection is hard to spot as MSA patients often run a "normal" temprature of as low as 96 deg and will have a fever a 98.6 deg.

Has your dad had speech and physical therapy, they can help with movement and speech/swallowing.

Many MSA paients have found that the Sinemet CR does not work well for them except at bedtime and instead take the normal 25/100 every three hours or take the CR during the day along with a half of a 25/100 (or 10/100) Sinemet (not CR) every 3-4 hours. It helps to keep a log of when he takes the pills and when he feels btter or worse and share this info with the doctor. The doctor get a much better idea of how the medicine is working that way.

Take care, Bill and Charlotte

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

Hi.... My name is Donna, wife and caregiver of John Sr.(66yr.). John was
dx'd with parkinsons on 12/96, nearly 4 yrs. later we knew something else was
wrong so we(the whole family) went to work on the puter.when we figured it
out (MSA) we printed everything we could and took it to his neuro. He said
he would study it and get back to us. At his next appt. the doc said he
thinks John has MSA/SND ( Dah!!!!! what would some docs do without our
help?????) He made an appt. with a movement disorder doc in Temple,Tx. and
on Feb. 2 this year it was confirmed. John has bad problems with balance and
coordination, he uses w/chair a lot and walker some. His reflexes are gone
and starts going downhill around mid-day. He is incontinent much of the time
with bladder and is constipated most of the time. Although he has accidents,
I have been able to take care of most of his bm's. He has to take his pills
in applesauce because of his swallowing, he has lost most of his muscles in
his face and his rt. arm and hand so sometimes I need to help him finish his
meals not to mention anything that is done right handed. He has some vision
problems and is always leaning to the left. At times he gets confused and
has a lot of short term memory loss. His voice is low and weak and he talks
very little which makes it very lonely around here. John takes sinemet cr
50-200, parlodel, artane (for drooling) and xanax for sleeping. He also
takes a lot of meds for CHF, COPD, Asthma and other heart problems. He had
an aortic tissue valve replacement in 4/2000 and he also has bladder cancer
which is not active at this time.
We have gone to many parkinson support meetings and have gotten more from
this web site than anything.
I look forward to any advice / comments that you have . Thanks so much for
being there for us.
John and Donna in Abilene, Texas

Hi all,
This group which includes clinicians, educators, lawyers, nurses, philosophers,
scientists and theologians has done an excellent discussion of all points good
and bad on stem cell research and made very valid recommendations about laws
concerning all phases of the research. For a look at the group go to:
http://www.nuffieldfoundation.org/bioethics/index.html
For the paper I have attached it. It is a little difficult to follow at times
as they seem to be contradicting themselves, but they are detailing their stands
on certain details. It seems to have been written in England and the references
to law, are probably English law. There were USA members on the committee.
They do not sanction and actualy mention safeguards against placing cloned
embryos into wombs, so no "body parts" other than specific cells could be
grown. Note - there are currently 210 different specific types of cells which
make up the human body. It takes chemicals from the womb to make all but two of
these cells.
Take care, Bill and Charlotte

Mary Ann, My mother Joyce (71, dx PD 2/97, rediagnosed MSA 9/98, died 11/00)
had internal tremors. I am sorry to say in her case, nothing helped much.
They were not there all the time, however. It is not something the doctor
directly acknowledge because it is no t measurable. Although her severe head
flex was by far her worst symptom, the internal tremors were next in line
for her. Good luck, Debbie
-

Anyone,
My husband Lee was dx in April 1999 with PD then further dx with MSA in
Aug. 2000. He has OH, bowel and bladder problems (has a cath), balance
problems (in wheelchair majority of day) and internal tremors. He's taking
two different sinemets, amantadine, and comtan for the PD symptons but the
tremors continue to escalate. Anyone else dealing with this. Between the
internal tremors and low bp, he has very little 'good' time to do anything.
Very discouraging. I'm, like the rest of caregivers, very scared.
Mary Ann from PA

OH MY, what a fantastic man you are.

Wish you were not so far from Arlington, I would like to drop in on your program.

Keep going as long as you can.

Barb in Arlington

Hi,
I live in Hatboro, PA, about 20 miles north of Phila. Any folks in
Eastern Penna., New Jersey or Delaware that want to get together
please email.
Steve Crawford

Hi Folks:
Forgot to tell you about my Band when I told you about Iris and her
problems. I started a band over two years ago and there are 10 of us
and that includes Iris. I play an electric bass guitar and Iris,
bless
her heart still is playing her Accordian. Right now, that is the only
thing that keeps her going. We go play when ever a Senor group or
anybody want to hear us. The gang and I help her to the spot we are
playing, we all see that she is seated and when we start, the men are
always there to pick up her accordian and put it in her lap. She is
losing the feeling in her hands and legs very quickly and we want her
to play as long as she can. I would like to put a picture on this
message board but don't know how to do it. This is my way of relaxing
and Iris gets so much satisfaction when playing. We are going to play
on May 19,2001 at about 1:15 P.M. for the PSP group in Houston, Texas
for their first anniversery for Karen and her group. I think it will
be a blessing for me as well as Iris. I have not met Karen in person
yet, but she has to be a very caring person to the PSP group in
Houston. We put on a about 45 to 50 minute show and YOU ARE ALL
INVITED. I wish we could play for all of you, you have meant so much
to me over these past months since Iris has had this MSA. There are
no
words to express my thanks for each message I read, as it helps me to
continue to care for Iris. She is my best friend and I think you know
that by now. My Band reached out to over 11,500 people in 2000.
Thanks so much to all of you,
Earl

Kathy:
Glad you liked the card. I came across it and it fit into what you
were feeling at the time. Don't give up the group, we've all been
down and at times things seem just to much, but then a ray of
sunshine comes across and you feel alot better just to know that
someone else is there that understands just how you feel and they
really do.
This group is really a great group and cares.
Hugs
Vera

We would like to remind you of this upcoming event.
SUPPORT GROUP MEETING: Columbus, OH area
Date: Sunday, March 25, 2001
Time: 2:00PM GMT
Date: Sunday, March 25, 2001
Time: 2:00 PM
Location: TeeJays Restaurant on the corner of
Morse Rd. and N. High St.
Columbus, OH
RSVP by March 23, 2001
Contact:
Bernice Bowers
614-833-2588
bernice.bowers@...
OR
Becky and Dave Danglade
614-879-6624

John:
Yes! stubborness does count as a sympton of MSA. Isn't it in the by
law or something. Next to not using the wheelchair. I wouldn't mind
Fred not using his wheelchair, if he hadn't asked the doctor for it
himself, but it's been one big pain in the neck ( now I know why I
have a stiff neck) The doctor put in to buy it after Fred asked for
it. It came, that part is ok, but after that , boy oh boy. I got an
authorization from them for September , heard nothing about anything
for oct, nov or dec. Then I got a bill from the w/c company for
rental on it. I called and asked why I had gotten the bill. They said
that the insuance wasn't paying on it, so I would have to. I called
the insuance , they said they didn't pay on it because they didn't
get an authorization from the doctor, so I called the doctors and
talked to them, they said they didn't put in another authorization
because they were buying it. So the doctor put in to have the
authoriztion for the three months to be paid and another to buy it
again. Well the doctor got the authorization to buy it, I've got the
copy, the w/c company send me a letter showing that it was purchase
on this date and it's our zero balance. Yes! that is fixed, wrong I
got another bill showing now I owe for sept, oct,nov, dec, jan, &
feb. So I call the w/c company to fine out what is what now. I tolded
them that the w/c was purchase and I have a statement showing no
balance. I'm tolded that because the w/c wasn't purchase until dec
and that the rental is still due on it. I asked why I was charged for
jan , feb if the w/c had been purchase in dec. They didn't know. I
have spend hours on the phone trying to fine out what is what with
this w/c. I'm sick of voice mail of who ever, staying on the line to
talk to someone about it just to be cut off and have to call back and
then when you wait on line ,you just get voice mail again. What ever
happend to music? I did get ahold of someone at the w/c company they
said they took care of it and are billing the healthcare again for
the rental, so I got a statement that it is paid again, then the next
day I get note from the healthcare saying that there was no
authorization for the w/c from the doctor and they won't pay for it.
So right now I don't know what is what. Oh and I forgot during this
whole time the w/c bill has gone to collection. So am I upset about
Fred not using his w/c, you better believe it after all this. But
believe me his going to start using it.
I can be stubborn too
Vera

Melanie:
If your dad doesn't want the massage, I'd be more then glad to take
his place, boy would I.
Hugs
Vera

Melanie:
The massage was a nice experience for Fred and I'm sure your dad
would also enjoy it. I'd love to have one just for the stress to be
worked out and to get rid of the stiff neck I have. Fred had talked
about going to the show and dinner so I could have a day away, well
like I said plans have away of changing. It ended up Fred had me
shoveling rocks all day and the dinner was a carry out hamburger. So
with the stiff neck that massage sure sounds good right now.
Hugs
Vera

Pat:
My mother suffer from Spasmodic Torticollis and had some botox
treatments a few years ago at the U of Irvine. Her voice is low and
shaky. She was having treatment every three months for about two
years. At first it improved the voice some, but after awhile it
didn't change anymore. The insuance wouldn't ok it because of the
cost. It may help Al to some degree, but if it is like my mother it
will only be for so long and the treatments need to be given every
few months.
Talk to his doctor and see what he thinks. Maybe Al will have better
luck with it then my mother did.
Always Vera

No I am from the cleveland area. That weekend is science olympiad at
ohio state. I was thinking if I could get a ride from columbus, then
maybe I could go.
Are you able to attend the North Columbus Support Group Meeting

-Jim, Thanks for the web site. We will check it out. Will let you know how
it goes. Take care, Pat

Louise,
Thanks for the complement. Nothing is supposed to dissolve in the large
intestine (Bowel). Food and medications start to dissolve in the mouth and
by the time they get the small intestine, all mater is usually dissolved.
Placing the medication into the stomach should make little difference. The
large intestine primarily absorbs excess water from the bowl to maintain
hydration of the body.
The side effects really depend on whether one is taking an intestinal
irritant laxative, e.g.. Ex-lax, or water soluble fiber stool softeners such
as Metamucil..
The elimination and reflux problem is probably due to lack of peristalses.
There are some liquid preparations, I take Lactulose, which greatly reduce
the need for digestion and are not irritant laxatives.
As far as the reflux, your doctor should prescribe a medication such as
Prevacid or Regland which usually really helps the reflux. My reflux is bad
enough I have to take both of the above.
A word about irritant laxatives. If the motility of the intestines has been
compromised, no amount of irritant laxative is going to help. They are meant
to irritate the intestines to increase the motility and water content of the
fecal mass. If the peristalsis's is week, they irritate with no good
results.
Talk with your doctor about this. As I said above, there are other choices
such as lactulose that can be poured down the peg tube.
God Bless,
Jim Stark

We would like to remind you of this upcoming event.
MSA CHAT
Date: Sunday, March 11, 2001
Time: 3:00PM GMT
Date: Every Sunday
Time: 3PM Eastern
To join us you need chat software called Netscape Instant
Messenger.
You can download it here for free:
http://home.netscape.com/aim/index.html
Simply click on "Sign Up" and follow the instructions.
After you have the software installed and running on your
desktop simply click here to join us in the MSA Chatroom.
http://home.inforamp.net/~pbower/msachat.htm
Click on "Join my Chatroom"

Hi all;
I'm so glad you all enjoyed the pics of Mother. I too like them and sent
them to her cousins in the south.(NM)
I just want to say that I'm not ashamed any longer for being on
antidepressants. My family only found out about 5 years ago. I have a couple
of sisters who need them and 2 other who are on them also. I have been on
and off them through out my adult life and always felt it was something you
didn't want others to know about. My family never expressed there true
emotional feelings to each other. Without the antidepressants, my life is
lethargic, unhappy, and very miserable, and it not only effects me but the
whole family. For some unknown reason, stress fits me like a glove and worry
goes right along with it. I want to impress on all the care givers to think
about it, if you need medication for anxiety or depression, get it! Don't
allow your self to be beaten down, fight back, there is help. I take 30mg of
Celexa daily and I'm proud to admit it!!!!
We are in a tough time in this journey of life, and we need all the
encouragements and love we can get, so keep giving it out group. It
reenergizes me, so I can keep on going and going and going. Ha Ha.
Mary Ann-

Just loved the pictures, yes your mother is beautiful and so are you,
you have made her surrounding very cheerful. You are indeed a dutiful
daughter. If only I still had my dutiful and beautiful daughter with us
on this earth.
Ann from Soddy, TN

I would certainly encourage you to investigate Botox.
While it may not be right for everyone, my father's
condition was so bad, and his quality of life was so
compromised by it, that he was willing to try
anything, even surgery, to improve his situation. I
just hope and pray that our initial impression that
it's working will hold for a while.
Melanie in OK

Louise,
I think that what's in the liquid gelcap stool softeners is basically
just mineral oil. They do that because no one wants to drink the
stuff. However, it seems like you could pour in in a peg tube with
no problem.
Anyone else had experience with this?
Carol & Rob

challenged.

Missed you much. Saved your huggie pandas for ages but when I try to open or print some of your posts I get flak from this machine and all kindsa instructions to download or things I positively do not understand. Son John (down the road) is exasperated with me. Brought me Windows and Internet for Dummies for my piling system of spare time reading. They are just beneath the 57 page telephone instruction book. NO SPARE TIME. Poor Jan has a new bed which frightens him because it moves him back and forth. He sleeps best when I rattle dishes or talk to him,i.e. myself. I just don't sleep. My son is YELLING instructions to me rapid fire. Bye, LA Louise where the violet vines, yes vines, purple the garden .

I guess I was day dreaming, but did someone say Botox might help the vocal
chords? I have such a terrible time understanding Al. He has done the
swallowing and speech therapy already, didn't help his voice much. Should I
mention Botox to his doctor? Thanks, Pat

Jim, thanks for the temporal frontal dementia and dystonia links special to
me and for all your valued contributions to the forum. As always for the
talented and hardworking, more requests. Are hard cased gelcap
stoolsofteners designed to dissolve in the bowel? Squeezed into peg tubes
would they irritate the stomach or disrupt digestion? I've asked my med and
nutrition people to no avail and we've some serious elimination/reflux
difficulties. Lurking, reading LA Louise of the caregiving challenged.

WOW what a dream wagon.

I had a Dodge Grand Caravan but in time I was just not strong enough to do the lifting and turning to get Ralph in and then getting him out and into his chair, up the ramp into the house, and into the bedroom for the disrobing. It took all the strength I had when he could not help.

There has to be a better way but the expense is terrific.

A good engineer may be able to figure it out. I know there are special things for special needs.

God bless all of you patients and caregivers, and may you be able to get the special supplies you need when you need them.

Louise I am with you and your suggestions. You have some great ideas.

Love to you.

Barb

Here is some sunshine for you.

[INLINE]

Everbody wants new wheels! Me, too, although my druthers lean toward a
gutted sedan with a trunk pull out ramp and a low PADDED pull stretcher
anchored where the front passenger seat used to be. Seriously. For all
of you OH and brain fogged, this cg'd steer you toward something with a
good locking brake, high back headrest and footrests adaptable to seat
height solid cushioning. If you sweeties bottom out it is not to panic but
to use a stocked ditty bag with this temporary bed. Lay backs are good
for peg feedings , brief changes, naps, suction bulb positionings, casual
dress outings AND lift compatible. Push chairs for hilltoppers and
heavyweights are expensive--almost as much as motorized. Pay more and get
one custom sized to fit. Your cg deserves the best to take care of you best.
LA Louise, taught by experience.

Tricia , You are in my prayers today.

Hang on. You are in a group that will love you through a lot of things.

Here is a hug for you.

Barb [INLINE]

Anne,
As long as you didn't lose all your marbles, you are okay.
We still loves ya mate!
Coo-ee, it got up to the 50's (F) here today. A real heat wave.
Hugs to ya, Bill and Charlotte
===========================================

Thank you for sharing your mama with us. She has a lovely daughter.
You are special.
Barb

Hi Mary Ann,
You'd asked about support groups in Pennsylvania. This is everyone on our
member list from PA. Feel free to write to connect with them and hopefully
a support group or two can get started in that state. If you'd be
interested in hosting a meeting please let me know.
Regards,
Pam
JOSEY1442@... Sarah Thompson
pjnemenz@... Pam Nemenz
pr735@... Pat Rieg
SSRN41@... Sandi Shaw
barber.carole@... Carole Barber
bvecenie@... Becky Vecenie
magnumpi@... Toni Bloss
myelo@... Cindy Estephan
amy_mall@... Amy Mall
Bigdeebe@... Steve Crawford
Sandmarker@... Kathy
KSKLblondie@... Kathy Lindsay
mlreynolds@... Mary Lou Reynolds
Llgphilly@... Linda Groman

Hi all;
As a daughter and care giver I spend the better part of 4 days a week with
Mother, even though she is in the Nursing Home. Here is some recent photos
of her and her room at the home. I'm trying to make it as enjoyable as
possible for her. The photo is of her grandpa Robert Brady who raised her.
Her mother took ill when she was 7 and she moved in with her grandpa. When
mom was 10 her mother died. At age 14 her father died in and auto accident.
So her grandpa was the most special person in her life. A little bragging on
my part....I made the wreath, the grape vine trellis and the window stain
glass painting.
Mary Ann-

Al does not drive anymore, he gave it up because of the dizziness. That
was at least 5 years ago.
Ann from Soddy,TN

Oh how great it is to hear from you. Stay well, we all miss you.
Ann from Soddy,TN

Is this the same thing as the "heavy sighing" the Drs.
have asked whether my father does? From time to time,
he will just sigh really big. It's sometimes
accompanied by a "whistle" sort of noise on the intake
of air. It must be significant because my father did
it while Dr. J. was examining him and he (Dr. J.)
pointed it out to the resident working with him as a
common symptom of MSA.
He has had this for years. He first noticed it when he
started taking Zoloft several years ago for depression
(a few years before his PD dx).
Melanie

Jim,
Thanks for posting that link. I'll forward it to my
dad. I just spoke with him and he said that he is
noticing a significant improvement this morning.
(Slightly less than 48 hours after the injections). My
mother said that his head is up farther than it's been
in months. We are encouraged. As I posted earlier, Dr.
J. said that the benefit doesn't peak until around a
month after the injections, so he has lots of time for
even more improvement.
Thanks again. Have a good day!
Melanie in OK

Try Spinlife.com They have great prices.

Nancy, from downtown Columbus, OH to Louisville is 200 miles. Are you in
Columbus? Are you able to attend the North Columbus Support Group Meeting
on Sun March 25, 2001 at 2:00 PM at TeeJays Restaurant on the corner of
Morse Rd. and N. High St.? If so contact me, 614-833-2588
bernice.bowers@...
Bernice

Kathy,

That's exactly what my mother-in-law had. She also only did it during sleep.

Hugs,

Pam

ok gotta ask. How far is that from Ohio State in Columbus?
Nancy

Bob and Judy Miller are the hosts for the first "Kentucky Walk for MSA"!
The walk will be held Saturday April 21, 2001 at E.P. Tom Sawyer State
Park in the Louisville, KY area.
For more information and to register email Bob and Judy at
B1952miller@...
or call (502) 253-9379. Join them for this walk for awareness and hope.

Hello all,

Please ignore the first attachment, something went wrong.

Here it is again.

God Bless,

Jim Stark

Hello everyone,

Since there seems be some interest about Botox for cervical problems, I thought I would send this information out for whoever wants it. There is a site WWW.Botox.com. which addresses Botox information only. The FDA has given full approval to the use of Botox in cervical dystonia.

God Bless,

Jim Stark

Hi Ann
We have been getting Snow White Ha Ha Ha for several weeks now. Just
about every day. Doesn't do us any harm though as it goes straight
into quarantine. We cant work out where they are coming from to stop
them.
Hope all is well with you. Love Anne

Hi All
I am sorry to all those that have written me the last few days. I
had been unwell for a few days, now I have somehow lost all my in
mail. We had a mini-cyclone yesterday plus thunder and lightening.
Everything had to be turned off and unplugged. When it started
though we were out and it has obviously knocked our computer. Either
that or I have done something daft!! :o) Definitly not a virus. I
got an illegal up, always getting those dang things, and the mail was
gone. I was hoping to get mail answered today!!! Had to wait until
this afternoon as more storms today. Now I haven't got any of them to
answer!!! I am so sorry. Hope this gets to you, I am not sure if I
am doing it right! Love Anne
PS The computer is going into the shop on Monday.

Perhaps some of you know of some web sites that are good for
wheelchair "shopping". I have an appointment at our rehab hospital
for a wheelchair clinic in April, but I'd like to go in as an
informed consumer!! I am using a manual rental right now and it's
just more than I can handle some days! I have to use it due to the
OH isues, I can't always maintain a bp high enough to keep me
upright!
Anyone have any "favorite" sites? Recommendations?
Thanks!
Catherine

Hi Marilyn: Thanks for the good news about how well you were treated at
the VA. Approximately how long did it take for you to be approved? We
live in S.Florida, where they just built a new VA nursing home.
Regards,jerrie

Jerrie,
The list of Drs. I got from the Dystonia Foundation
includes neurologists, ENTs and even opthamologists. I
suppose it depends on what type of dystonia you are
dealing with.
Good luck!
Melanie

John,
Are you telling me you are a knothead? :o) It's not nice for you to go the
the ER with two black eyes from a fall on a concrete floor. The ER people look
strangely at the caregiver. Do you want your wife accused of spouse abuse?
Get used to the W/C!
Take care, Bill and Charlotte (who now uses the W/C)
=======================================

Hello to all, I want to let you know the N. Ohio PSP Support group
invites all those with MSA and other similar neurodegenerative diseases
and their families and caregivers to join with us in mutual support.
These diseases have more similarities than differences and we share the
same problems. The group meets monthly on the 2nd Sunday from 1-3 pm at
Southwest General Health Center-- room C-1 basement level- 28697 Bagley
Rd , Middleburg Hts, Oh 44130. Enter the Hospital by OLD OAK Blvd. Park
in the garage at the FAR REAR of the hospital (behind the Ireland Cancer
Center) -Parking is free and all areas are Handicap accesible - exit to
the hospital and take the elevator to HB (hospital basement) Turn left
and follow the signs., room C-1 is 2nd door on Left near the cafeteria.
The Hospital is SW of Cleveland 2 blocks W of the Bagley Rd
ramp off I-71 between I-480 and the Ohio Turnpike 10/161 exit We invite
anyone within driving distance, and all who wish to come. For detailed
driving directions use map-quest <http://mapquest.com
given above.
Our speaker this month. March11, is Michelle Adams, Speech Therepist who
will talk about swallowing + speech difficulties and give tips +
suggestions. Next month Dr David Riley a motion disorders specialist is
scheduled to speak. Hope to see many of you there. Hugs Pat Beekman
wife/cg Ed 68/13+PSP-- dec 2/21/2000
(440)234-0007

Jerrie,
I did read about an experimental program and I think it was in Philadelphia -
here on the list maybe a year ago. Does anyone remember this? Several people
questioned it.
Take care, Bill and Charlotte

Jerry,
What a wonderful brother you must be. When I read about you talking to your
brother, I am so impressed. Do you realize how many family members go
through this life without ever talking to the other members of their family.
Keep up your good work!!!!!!
best wishes,
Marilyn in TN

For all who can attend,there will be a support group on Sunday March 25,
2001
Everyone Welcome
Location
Tee Jays Country Place Restaurant
4910 N. High St.
Corner of Morse Rd. & N. High St.
Columbus, Ohio
Rsvp by March 23, 2001
Leaders Becky and Dave Danglade
614-879-6624
or
Bernice Bowers
614-833-2588

Hi Ann: Thanks for the info re:VA. The appt. is on Thursday..should be
interesting. I was told to make a list of "wants". Should be
interesting, to say the least! Thanks again..jerrie

Hi Elaine: yes, you are right.Bob has terrible balance problems also.
He uses the walker at home & the wheelchair when we go out. He doesn't
have the OH or the incontinence problems (yet). Hopefully they won't
appear. Which med is Bob on? My Bob is on selegiline (5mg.) for
balance, but it is not helping. This disease is so frustrating and
difficult to understand! Take care. jerrie

Hi, I live north of Atlanta, right out of Chattanooga, TN
where in Ga are you from I don't have a map so I can't look it up.
Ann from Soddy,TN

I think Bill makes a good point. If your husband is still having
halucinations you should look for a cause in something that is
happening now.
What does his neurologist say about the halucinations?
Doug in GB

my medicine is to find a puppy.... it gives you a new focus. you never quit
loving that old dog. but you cant help smiling at the antics of a puppy
becky

Kathy, All I have to says is "AMEN".
Mary S.

Hi Melanie: My husband has MSA. His main symptoms are balance & very bad
speech. He has great difficulty forming words. His voice is not soft,
like others i've read about. The ENT dr. said his vocal chord is
paralized & voice box tilted. My question is: do you know if they use
botox for these problems? Thanks for your reply. jerrie

Jerrie, My husband made a stridor noise when sleeping. He was diagnosed with partial airway obstruction, due to vocal cord paralysis. He had to have a trach. For two years we didn't know why this happened. We went to Vanderbilt to see Dr. Ossoff for help. THe doctor took Dave's trach out and went in through the stoma and gave Botox injections into the vocal cords. This was suppose to help with his speech and was a way to let the doctor know if laser surgery to vocal cords, to open airway, would work. He told us that the shot would have to be repeated every three months. Unfortunately, the shot didn't work but for only three weeks and we decided we wasn't going that route. He was diagnosed with MSA last year and found through literature that vocal cord paralysis was a symptom of MSA.

Take care, Kathy

Greetings Jerry!
You mentioned:
As a speech and theater minor (high school and college), I can personally
tell you how important this is. Most people can not tell I have any speech
problems. I just sound a lot slower and more deliberate. Unfortunately,
longer pauses can lead some people to assume there's not much upstairs. If
someone becomes rude like that, tell Larry to just laugh and note he has
speech problems but understands quite well! A polite rebuke helps the mood.
However, it really sounds like Jerry is adjusting well to dealing with his
situation. I think you are right that feeling as if he as more control of
the situation is a big help.
Unfortunately, I am not able to help with blood test.
Regards,
=jbf=
John B. Fisher

Carol,
We've tried everything! He's just not giving on this
one. I don't think it's that he sees it as less than
macho, as he's not a super-macho/athletic guy. I think
he just puts it in the category of "silly things
people waste money on".
My mother...now she's a different story. Bless her
heart. If I could afford it, I'd hire someone to give
her a daily massage and she'd gladly accept it.
Melanie in OK

Dr. Jankovic made a large effort to emphasize to my
father that patients who exercise (both stretching and
aerobic) do much better than those who don't. I just
hope Daddy heeds his advice.
Dr. J. also thought that Daddy's speech (projection
and ennunciation) were quite good, and didn't even
really consider them affected yet. However, I've
noticed that his voice is much softer now. Still no
slurring yet, which is good. Also no swallowing
problems, which the Dr. felt was encouraging. He
suggested that Daddy see a speech therapist now, even
if just for one visit, to learn to project better.
Since he plans to continue working, he needs to do
this so he feels more confident about his speech.
Have a good day!
Melanie in OK

More contacts:
Take a look at www.rollxvans.com , www.imsvans.com , or enter adapted vehicles
or adapted vans on www.google.com .

Debbie:
I had gotten on last night to answer this and to tell you that I had
a very dear friend passaway yesterday, but as I was just starting to
write my sister in law IMS me and tolded me that her son has cancer
and will be starting treatment. So after that it was all down hill.
Really couldn't think. This group kind of knew my friend. She was the
one that I got the brownie recipe from years ago and it had that four
letter word in it that Bill loved given me a bad time over. You would
of liked Yvonne she was a really giving person. I will miss her
always.
I just wanted you to know that I hope the best comes out of the test
for your dog. Love can change alot of things and he knows how much
you love him. We're all pulling for him and that's alot of friends
wishing him well.
Hang in there.
with love Vera

Bill, I remember reading on the PD list about people receiving botox
injections for their voices. And they did need to retreat months later.
Debbie

What a wonderful experience for your husband. We are
trying to talk my (very old-fashioned) father into
getting massage therapy. It's a little too out there
and "new age" (even though it's a really old concept)
for him. I know it would make him feel better. And
many physicians now acknowledge the therapeutic
benifits of massage, beyond just stress relief. My
physician is so convinced of the healing power of
massage, that he has a massage therapist on staff.
There is so much research now that shows that a good
massage is really healing. Studies have shown that
people who receive regular massage have stronger
immune systems and much better overall circulation.
Many hospitals now have massage therapists on staff
because Drs. feel that people with certain illnesses
recover much more quickly with massage therapy.
I understand that it's certainly no replacement for
physical therapy, but it's definitely a complementary
treatment that, if done correctly, can only help. And
even if it doesn't make you better, how can something
that feels so good be bad? :-)
Melanie in OK

I got this link from my sister and thought some of you might be interested
http://cartalk.cars.com/Got-A-Car/Special-Needs/
Fairly informative.

Mary Ann from PA,
Welcome, sorry you have to be here. Are you a patient or caregiver?
While I don't know of patients in your area, you live near Toni Bloss. Her
father
has MSA in Virginia. Toni is just North of Pittsburgh, but I don't think 25
miles.
Take care, Bill and Charlotte
============================================

Good Morning John,
Thank you for the advice. I talked to Larry a while last
evening and he seems to be benefitting from the PT
and the speech therapy. His therapy day was yesterday
and he was tired (he says the therapist tells him that
he has to work until he gets but that she is careful to
avoid over-tiring him) but I think he seem to be getting
some real benefit from just the fact that he now has something
therapeutic to do as opposed to doing nothing about
anything. He likes to discuss the therapies, how he is
being told to speak slowly, the tongue exercises, etc.
I'm sure that's all good for him both physically and
emotionally right now.
He told me that the blood test he's waiting for results
from was something spelled like (but not) cholesterol.
Said it had a different ending. He said the lab techs
commented on the fact that it was a rare blood test for
them to draw for.
Anyone have an idea what this test is?
Jerry

Hi,
I'm new to the group and found much comfort in reading the exchanges that
have been posted. I read about the search for a support group and started
thinking how nice it would be to find one here in western Pennsylvania. Then
Kathy and Judy's exchange about finding out how close they are prompted to
write this. Anyone close to the Pittsburgh area. I'm north about 25 miles.
Everytime I read the emails, I get a sense of a big hug. Thanks everyone.
Mary Ann (yep, another one)

From what I have heard of the injections, they are supposed to work pretty
good. I hope your dad gets his wish.
Just wanting to know,
If any of you ever visit the NPF site www.parkinsons.org they have listed a
"Stages List" for the disease. Do any of you know of a "Stages" list for
MSA?
I think it would be a helpful thing to have.
Tricia Jensen
pajensen@...

You might try getting a stuffed dog that she can carry around with her. If
you still have anything in the house that smells like the old dog, rub the
stuffed toy inn that dogs stuff and get its scent on it. She will know it
is different, but might find it comforting. A new little puppy would be the
best bet. Again, here, to introduce a new puppy, rub something from the old
dog on it to pick up the scent.
Tricia Jensen
pajensen@...

I'll give you a call or a email when it get closer to our trip (July).
Tricia Jensen
pajensen@...

We just got back from Houston this evening. My dad's
appointment with Dr. Jankovic went very well. He
concurred with the dx of MSA (not at all a surprise,
and not really why we went.) He said, "MSA is not a
diagnosis I like to give, but it's what you have.
We'll deal with it." I was encouraged b/c many of the
symptoms he expected my father to have, he doesn't. I
suppose that means he's not as advanced as we first
thought.
Marilyn, I know you were particularly interested in
whether or not the Dr. felt Botox would be effective
in treating the neck flex (which was our main reason
for going). Dr. Jankovic said that in my father's
case, the neck flex is being caused by severe muscle
spasms, as opposed to "bent spine syndrome", which is
good in that Botox injections are usually quite
effective. He gave my father two injections (one on
each side of his neck). He should notice improvement
in 3-5 days. Dr. Jankovic seemed *absolutely*
confident that they would be effective for him. I
didn't know this until today, but he pioneered Botox
therapy, and was the first Dr. to use Botox on humans.
Can't get much more expertise than that. :-) Dr.
Jankovic said that the next time we go back, we might
want to consider injections in the abdominal muscles
which seem to be pulling Daddy forward, as well. He
also mentioned injections in his upper back, as those
muscles are spasming badly, too.
While we still have the MSA to deal with, we really
are encouraged about this. My father has said for
months that if he could "get his head up", he could
deal with the other problems he has, and that he would
feel like a human again. The night before we saw the
Dr., Daddy said, "I wish I would get a miracle
tomorrow, but I don't think it will happen." Today,
after seeing the Dr., he told my mom, "I have more
hope than I've had in months." We know it's not a
miracle cure by any means, but in the few short months
we've known about this disease, we've learned to
appreciate the little things.
If you want any other info, let me know.
Melanie in OK

My house is available if it is just needing a place to meet. I live in the
hills of Glendale.
Tricia Jensen
pajensen@...

Hi Kathy,
Where is Jesup in South Georgia? We live on Hilton Head Island, SC. We're
about 40 minutes from Savannah and I've been as far south as Ricmond Hills
but have no clue where Jessup is? OOPS, why don't I look at a map?
OK, I'm back, Holy Smokes! You are almost my neighbor! I think I feel a
road trip coming on!! Seriously, Mark and the poodles love taking road
trips on Saturdays and Sundays so let's think about meeting.
Take Care,
Judy Whittaker

Hi Marilyn,

We tried to work something out when we went to Tennessee, but it was a long way from where you live. It would be wonderful to see you and talk to you but I live in South Ga. and would have to find someone to stay with Dave if he wasn't able to go. Maybe things will work our for us to meet.

Thanks, Kathy

Hi Ann: thanks for the reply. Approximately how long did it take for you
to be approved? Bob has an appt. at the VA clinic for a workup next
week.Just curious about the time frame. I understand they do supply
aides, etc. if they decide to approve you based on need,(type of
sickness), time in service (Bob was in for 4 yrs.) Hopefully we'll be
able to use some of the services that they offer. Thanks again. Regards,
Jerrie

Hi Everyone,

Today is the first day that I have felt like talking with anyone. I will never be able to find the right words to express how much each and everyone of you mean to me. All the emails I recieved from the group supporting me and encouraging me to stay in the group, has given me new strength and the feeling of "belonging".

Thank all of you for being the caring, loving people you are. I feel as if this group is a God send to me. I think we are all blessed to have each other. How horrible would it be to have to face this disease with out each other.

Love , Kathy

Hi Gail,

Thanks for your words of encouragement. What part of Georgia are you from? I live in Jesup,{in South Ga.}. Wouldn't it be wonderful if we lived close to each other.

Take care, Kathy

Yes we are receiving help from VA, Al gets all of his medicine and his
diapers and depends and support hose, catheter etc. from VA.
You have to be very persistent with them and almost demand help.
Ann from Soddy,TN

We have been there and done that with Dr. it took about 3 yrs to find out
what was wrong with Al.
Since we finally got him on med. and information from the support group
we have been able to keep him on his feet and going.
He does have bad days and I now know to check his B/P and get his salt
tablets in him.
We have also gotten a lot of fluids, water and gaterade in him daily,
after the terrible UTI he had he is now a believer in fluids.
Ann from Soddy, TN

We just lost one our dogs about 2 weeks ago after 14 years.
It was very hard on us especially on Al she had to be with her daddy all
of the time.
Our other dog Mollie is so lonely, she keeps looking for Maggie. Don't
know what to do except get another dog.
Our babies were reject that someone dropped in the wood and found there
way to us, so I guess we will wait and see what God sends us from the
woods.
Ann from Soddy,TN

Good to hear from you, even if it is not so good news.
You sound tired.
Ann from Soddy,TN

this is a test

HI. Originally I took lamictal and adavant for these sever myoclonic
seizure like activity. I no longer take adavant. Medicines like that
seem to get to be too much for my body. I began sleeping way too much.
The lamictal however, relieves this leg burning pain and the arm, leg,
head ... jerking and drawing up movement.
nancy m.

Greetings Jerry!
Good news is that MSA can not be inherited. So your children should not
have any problem with this.
And as to your relationship with your brother. It's very special. So, just
enjoy being together and continue to enjoy life ... as your plan to goto a
NASCAR race shows you are doing. Though it will be hardest for you, move
forward. That will make it easier for your brother. And always remember,
he's just your brother. MSA just is a new part of his Journey. And yours
as someone who loves and cares for him.
God gives us unusual blessings. While we can argue that MSA is only a
curse. What we do with it is what can transform it into a blessing. God
brings order out of chaos. Life out of death. And blessing out of curse.
Embrace the chance you have together and rejoice in your life together.
Regards,
=jbf=
John B. Fisher
< jbf, who always gets more philosophical when he has a long / bad day at
work ... but he hopes it helps others

Thanks, Vera. Blood work was encouraging today but haven't talked to the vet
to see what it all means. Still now out of the woods by any means. But I
know that everyone on this lists knows how important it is to appreciate
even a good day. Take care, Debbie

Tricia :
No support group as yet. Trying to get a little group going, but seem
to be missing getting it together. Diane Maxwell has voiced wanting
one and Bill Turner has also said that he would like to have
something going. I did speak to Diane on the phone about getting
together even if it's just a park or somewhere for coffee. I did call
Diane again and left a message, but haven't heard anything as yet.
Will try calling her again and get back to you.
Always
Vera

Click here: On Our Own Terms: Moyers on Dying - Home

I have gone through these. They have been so bad that my husband has taken
me to the hospital thinking they were seizures. But they were not able to
find the reason for these. They just gave me some muscle relaxant (a shot
of Ativan), waited until it stopped and sent me home. One doctor thought it
was a panic attack. I never thought so. I keep Ativan/now Klonopin
available for them. I have never found a reason for them. I think that my
muscles are always just so cramped up that sometimes something snaps and
they all just have to start moving and get rid of energy. I try not to let
it scare me anymore.
Sorry, no answer!
Tricia Jensen
pajensen@...

Hi all,
Last night around 7:30 Warren was in bed and suddenly called me. When I got
in to the room I could see he was shaking all over very heavily and
steadily. I had given him his Klonopin (sp?) just before he got into bed so
I assumed it hadn't taken affect yet. It was quite a few minutes of this
shaking and he also had a terrible headache across his forehead and back. I
gave him vicodin for that and I think it also helped relieve the shaking as
in about 20 minutes or so he was calm and asleep.
Then this morning about 1:30 he started in shaking again and the headache
was back. He also was saying he was very hot, took off his night shirt, and
as I was helping him back in bed, said "Don't touch me you are too hot." I
leaned over to kiss his forehead and he pulled away saying no "your breath
is too hot." He slept for a couple of hours with just a sheet on, I had
both blankets on and not hot. He woke up later asking me to help him get
warm.
I telll you all this to ask if anyone has gone through this. I couldn't
take his b/p as he was shaking so hard the machine kept starting over. This
morning his b/p was 116/75 sitting and 75/50 standing. I called Dr and he
will see him this afternoon.
Thanks for any input you may have,
A pretty tired and worried, Mary S.

Annette,
There are other types of IV's for people like John. I think one is called a pic
or somthing like that. Ralph Selleck had one, but as far as I know Barb is en
route between Arkanas and Arlington today. It usually takes an IV specialist to
insert one I think.
But there are options.
Take care, Bill and Charlotte

Hi this is Annette. I've been on an emotional rollercoaster. I feel
that John is at least slightly dehydrated. I requested an iv (since
he has difficuty swallowing all the time but it got worse last week.
Friday the doctor ordered one bag. THE NURSE THAT CAME OUT GOT THE
NEEDLE IN AND HOOKED UP WITHOUT ANY APPARENT DIFFICUTY. He perked up
some Saturday but not back to "his normal". We had a doctors
appointment Monday. After telling him the signs etc. He agreed that
he probably didn't get enough to bring him back to his potential, and
said he would order IV for 72 hours. Yesterday the same nurse (her
her supervisor this time) came to hook up IV. She tried the same
vain but a bit higher but while she was inserting it, she hit the
control on his chair and caused it to move forward (or back) when I
got it stopped. she said the vain was "damaged" (my word) and she
would have to try another.....near the hand was too small.....tried
left hand...it (blew). then announced that she could not hook up the
IV and would have to contact the doctor. Today is Thursday...doctor
is not in...
NOW FOR MY QUESTION; SHOULD I ACCEPT THAT HIS VAINS WILL NEVER HOLD
AN IV AGAIN? It seems to me that if they were good enough to get in
with no difficulty five days ago that there should be some hope that
they will repair. They are saying that his veins are "tough" ? on
the outside?????? that his valves are hard???? probably from the
disease process !? ANYONE HAVE ANY EXPERIENCE WITH THIS KIND OF
PROBLEMS AND HOW WAS IT DEALT WITH ? I'm aware that it's possible
to put an IV in the neck....but that is done only when the patient is
in the hospital and John is at home. I've also been told that that
is considered only for long term treatment. IS ANYONE AWARE OF
A "BLOWN" VEIN HEALING AND BEING USED LATER? ANY EDUCATION IN THIS
AREA WILL BE APPRECIATED.

Hi Vera,
Do you have a name and phone number for the masseuse you used. Since I am
north of L.A., she might come my way.
Tricia Jensen
pajensen@...</