Jean,
Remember that 98.6 can be a fever with MSA. She could have food stuck somewhere
it is not supposed to be and not yet causing pneumonia also. I certainly would
not let it continue very long. If she starts getting overly tired or weak, take
her to the ER. Better safe than sorry.
Take care, Bill and Charlotte
Jean, Is it possible to get a chest x-ray? I would think ruling out
pneunomia is important (though I would suspect a temp with that). As for the
barking cough, my kids had that when they had croupe. Don't know what it
could mean now. Again, I think an x-ray is in order. Can you go to an ER to
do that?
The only other thing I can think of is the possibility of reflux. Good luck
and let us know what happens. Debbie
Debbie White
dwhite@...
Hi Everyone,
Looking for some answers and I know if anyone has them it is this group.
My sister Chrissie seems to have aspirated on Christmas eve while sleeping.
She woke up coughing and coughing and then became very scared. She said
something was stuck in her throat and she felt as though she needed to vomit.
She did not vomit and eventually went back to sleep with no furthur problems.
Since that time she has had this cough, more like a bark, and it will not go
away. She still says it feels as though something is stuck and points to just
below where an adam's apple would be. She doesn't cough a lot but several
times during the day. She is not bothered at night by it.
Because of all the meds that she is on, I have not done anything except keep
a close eye on her. She has no temp and seems to feel fine other than the
tight cough.
Any suggestions??? BTW she had taken a stool softener before going to bed.
We are away from home and have no doctor here. Of course if things got worse
I would take her to the ER asap.
Thanks for listening.
Jean (& Chrissie)
i like the way you think!!!
and, YES, i am truly just as gifted!
<smile
thanks for the uplift.
kaye
Elaine,
I think income is a problem for many people. My husband, Rob, was
diagnosed at age 51 and stopped working at that age. He currently
receives social security disability income as well as income from two
disability insurance policies - one private one that he took out
years ago and one that was paid by his employer. I quit my job (as
CFO of a software company) last March, at age 50. I did this NOT
because Rob needs full time care (he doesn't yet) but because I
wanted to spend time with him and do some fun things before he became
too ill. Because I left my job recently, we are paying for group
medical insurance through COBRA. In August, when COBRA expires, we
will purchase a medicare supplement for Rob and I will get my own
private pay policy.
We are fortunate. We both had executive level, well paying jobs, and
we invested wisely. But even at that, we would have a problem if not
for disability income. I tell EVERYONE I know to be sure they have
adequate disability insurance. It's at least as important, if not
more so, than life insurance. It's very hard to convince young
people that they should bother to be insured for disability, but it
is so important. As we all know, the last thing you want to worry
about when facing a long term degenerative illness like this is
money! And it can happen to ANYONE, as the diverse members on this
list can attest.
Was Bob employed when his illness was diagnosed? Was he covered by
any type of disability policy? If so, file a claim. If he's
receiving SSDI, there shouldn't be a problem in collecting. (I
say "shouldn't" because one of Rob's policies gave us a hard time -
we ultimately had to hire a lawyer and threaten to sue, but they are
paying now.) Also, if there are any life insurance policies that you
are paying for, check to see if they have a "wavier of premium"
clause in the event of disability. If so, bu sure to contact them
and tell them Bob is disabled. You will be able to retain the
coverage, but not pay any premiums. Some life insurance policies will
actually pay out the death benefit before the insured dies, if you
can prove that the illness is terminal. I think the person has to be
pretty far along for that, though. Anyway, check all your insurance
policies, and read the fine print. You may find soemthing helpful.
Carol & Rob (who are off to Aruba for a week on Saturday, to escape
the cold and snow of Lexington)
--- In shydrager@egroups.com, "Elaine Grimmesey" <GRIMMESEY-E@s...
not alone in that we lost out primary income when Bob could no longer
work. (Or are we the only ones with this illness who are not
independently wealthy?) The loss of income coupled with increased
medical expenses must be problematic for many. We are o.k. at
present - he is receiving Social Security, some retirement from IBM
Corporation and I am working full time. But, when/if I need to stop
working (which may not be far off), we will have a genuine concern,
what with mortgage payments, etc., etc.,
quite creative - and must spend considerable time sorting through
much red tape re. medical authorization/utilization. I'm considering
working from home - but not sure what the compensation level would
be. College degrees and much business experience aren't necessarily
virtues that one can utilize from home (luckily, I'm quite proficient
on the computer, so might be able to use these skills.)
you're doing just fine, and thought you could perhaps offer some tips
(like the information on Veteran's benefits, etc.) Thanks for any
input - Elaine
Elaine,
A lot depends on if the services/medications are for a
service connected illness. My husband rec'd meds for
free for about 30 years because the problem had been
caused by military service. There is a web site that
explains a good deal about what is covered. You should
be able to get some services with a reduced rate even
if the problem is not service related. I don't have
the url handy, but if you are interested, I will check
it out. If you search for Veteran's Administration
you may find it.
Gail
=====
Gail
gsouthwick@...
Mom is home from the hospital now and it seems the hallucinations
have stopped. The doc reduced her Sinemet by half and she's seeing
the neurologist on Tuesday for evaluation. Thanks for all your help!
It made a real difference for me.
My mother also has very small veins; they use a pediatric needle on
her in most cases IF there is one in the lab!
Thanks so much, Barbara! I've printed out the page and will research the
individual entries when I have a few minutes.
It all brings up an interesting point, however. I assume we are not alone in
that we lost out primary income when Bob could no longer work. (Or are we the
only ones with this illness who are not independently wealthy?) The loss of
income coupled with increased medical expenses must be problematic for many. We
are o.k. at present - he is receiving Social Security, some retirement from IBM
Corporation and I am working full time. But, when/if I need to stop working
(which may not be far off), we will have a genuine concern, what with mortgage
payments, etc., etc.,
How do you who stay home full-time cope/supplement? You must be quite creative
- and must spend considerable time sorting through much red tape re. medical
authorization/utilization. I'm considering working from home - but not sure
what the compensation level would be. College degrees and much business
experience aren't necessarily virtues that one can utilize from home (luckily,
I'm quite proficient on the computer, so might be able to use these skills.)
I've been curious about this for some time - you all sound like you're doing
just fine, and thought you could perhaps offer some tips (like the information
on Veteran's benefits, etc.) Thanks for any input - Elaine
Elaine, here is a page for you to follow up on. Hope it helps. Ralph was
never in the military service so I do not know anything except what I
read.
Have a great day. It is 61' in Arlington, Texas right now. Plenty of
sunshine and the snow with ice has cleared away.
Barb
http://www.FirstGov.gov/fedsearch2/index.jsp?db=www&mt=all&mw=Veterans+benefits
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
Elaine, here is a page for you to follow up on. Hope it helps. Ralph was
never in the military service so I do not know anything except what I
read.
Have a great day. It is 61' in Arlington, Texas right now. Plenty of
sunshine and the snow with ice has cleared away.
Barb
http://www.FirstGov.gov/fedsearch2/index.jsp?db=www&mt=all&mw=Veterans+benefits
I think Anne will respond to this one. My dad has narrow veins and arteries
(which they discovered doing angiograms) -- in his case it's hereditary.
Debbie
Debbie White
dwhite@...
Hi all, Warren had an IVP test yesterday and they had a hard time
finding a vein strong enough to take the injections. They commented on how
small and fragile his veins were. They did finally find one that would take
the needle and they did the test. Warren has never had any problems with
nurses finding veins before and our question is could this be due to
MSA/SDS, or is it old age showing up? He's almost 77 now and is quite
fragile in many other ways due to SDS.
This test was given because DR saw some slight blood spots in his urine last
time it was tested.
Mary
Barb,
How far SW in VA are you? Grundy? We had a friend from Grundy. Our adopted daughter's family came from Christiansburg.
I don't know about Sinemet for leg tremor, it seems to work best for rigidity. Maybe an anti spasm or muscle relaxer would work (two mentioned here often are Baclofen and Amantadine). Who knows, it probably would not hurt to try one of them or even the Sinemet. Talk to your doctor and see what they say.
Take care, Bill and Charlotte
Study on pain relief
Here's something from HealthScout@SafetyAlerts that Bill and Charlotte Werre
(bwerre@...) asked us to alert you to:
WATSU MAY BE GOOD FOR YOU
Underwater massage popular with pain sufferers
To see the item now, visit HealthScout at
http://www.healthscout.com/cgi-bin/WebObjects/Af?id=106931&ap=55.
Here's to your health!
Coo-ee Mates,
We could use some of your busses right now. Ours in New York have to let people
off into piles of snow :o) Of course if you got off the "correct" side 50 cabs
would flatten you, so that's not good either. The snow really dumped on New
York, missed Washington totally. Of course we are still frozen here.
Most ponds, lakes, creeks and canals are frozen over, but have thin spots, so
there are warnings everywhere as people venture out onto the ice. So far only
one kid has fallen through as far as I know and he was not killed. The river is
not frozen across, but we may venture to the falls this weekend to see all the
ice.
Hugs to all, Bill and Charlotte
More good news from privately funded research,
Bill and Charlotte
Scientists clear one hurdle for using stem cells
By Merritt McKinney
NEW YORK, Jan 03 (Reuters Health) - Scientists may have
found a way to overcome some of the obstacles preventing
the use of embryo-derived stem cells, a type of immature
cell
thought to hold great promise in the treatment of
illnesses
such as Parkinson's disease and diabetes.
While the cells can be grown in the laboratory after they
are
collected from embryos, the characteristics of stem cells
make it difficult to move them from the laboratory to the
clinic.
"We can't take the embryonic (stem) cells that we have and
transplant them into anything," said Dr. John D. Gearhart,
of
Johns Hopkins University in Baltimore, Maryland. They will
"just as likely form a tumor as they will differentiate
into some
sort of tissue," he said.
Stem cells never stop dividing, so if the cells were to be
transplanted before they had begun to form more
specialized cells, they might form a tumor instead of
normal
tissue, Gearhart explained.
The key to overcoming this problem is to transplant cells
that
have already specialized somewhat, a process known as
differentiation, according to the Johns Hopkins
researcher.
Differentiated cells are no longer immortal, so they do
not
run the risk of becoming cancerous, Gearhart noted. "Once
a cell commits, it won't become a tumor," he said.
In a report in the January 2nd issue of the Proceedings of
the
National Academy of Sciences, Gearhart and his colleagues
detail their successful efforts to produce cells that can
still
form many different types of cells, but do not carry a
risk of
forming tumors.
The researchers started by coaxing embryonic stem cells to
form clusters of cells known as embryoid bodies. From
these small masses, the scientists then isolated cells
called
embryoid body-derived cells, which they grew in culture
dishes to form different types of cells.
When they analyzed the embryoid body-derived cells, the
researchers detected genes for several different cell
types,
including neurons and blood cells, Gearhart stated.
The fact that the embryoid body-derived cells contain the
genes and other markers for several different cell types
is
intriguing, according to Gearhart. It suggests that the
cells
"share a cluster of genes," he said. If this proves to be
the
case, it may mean that the cells, although more
differentiated
than the earliest of stem cells, may have the capability
to
form different types of tissue depending on where in the
body they are transplanted, Gearhart added.
The researchers also found that, unlike the most immature
stem cells, embryoid-derived cells are not immortal. They
will
divide 70 to 80 times and then die, Gearhart said, which
is
enough to grow tissue but not to form tumors.
The next step, Gearhart pointed out, is to place the cells
in
animals to see whether they can treat disease or heal
spinal
cord injuries. Official results will not be available for
several
months, but preliminary findings look promising, he said.
Gearhart and his colleagues also note that growing
embryoid body-derived cells is much easier and faster than
growing early stem cells. The ease in growing the cells,
as
well as the ability to have a uniform population of the
cells
and the ability to freeze and thaw them--which is
important
for storage--may reduce the number of cells that need to
be
collected from embryos, according to Gearhart.
The research was funded by Geron, Inc. Gearhart and one of
his colleagues, as well as Johns Hopkins, have a financial
interest in the company.
SOURCE: Proceedings of the National Academy of
Sciences 2001;98:113-118.
© 2000, Reuters Health Information Services
Right on, Charlotte !!!!!!!!
Keep up the speech therapy but do it YOUR WAY!!!!!!
Barb in VA.
Hi Vera,
Thanks for the suggestion about the med. I'll check it out...
BP
Bill,
I know now that I shouldn't have come off the Requip suddenly as I did but
neuro at the time was not on the ball.
Since I have been on no medication for almost a year and am bothered by JLM
every night, I wonder if Sinemet would help relieve that? The JLM interfere
with me getting to sleep and then in the morning my legs are so stiff and
sore from all the tension.
I went off the Sinemet because it was doing nothing for my balance situation
(I have no tremors) but I also was not having JLM when I was on it. I
greatly appreciate your comments.
Barb P. in cold (brrrr) SW Va.
Hi all,
Disorganization is a state of mind. Several very intelligent (they could
explain to you in simple terms what they were doing and how it worked)
scientists I knew, used the same filing system I use. You throw everything on
the same stack of papers, so if you are looking for something you saw about a
month ago that should be about 2 inches down in the pile. However, now that I
have to deal with Medicare and BCBS, I need a separate pile for those alone, as
they seem to build up at a much higher rate.
Since my first priority is taking care of Charlotte, the house does not get
repaired as it should. We need new rugs, a paint job and wheelchair marks are
all over the house. The flower beds are grown over with weeds. Charlotte used
to take care of the flower gardens. She would say "I want one here" and I would
put it there, then she maintained it.
But today I got a furniture dolly and am mounting a kitchen chair on it, so that
I can get Charlotte to the shower stall past the commode which is only 19 inches
from the wall. First tests say it will work. That way I can roll her right to
the edge of the shower stall and she won't have to go over the side of the tub.
Take care, Bill and Charlotte
Hi Everyone:
No! I didn't fall off the face of the earth. I'm still hanging on
here. Didn't get the good night sleep for Christmas, but did get a
new Van after. Going to miss the old little Vista, but the state wont
let me keep it, not worth the money to get it fix. So I guess I will
just have to make myself take the new car.Got one that I can put a
lift on. Fred is using his w/c more and more. I think he is in a
faster stage then he has been. Don't know sometimes I think he is
giving up the fight, but I hope not. I have to take him to the Neuro
next week to see how he is doing.
Sorry I haven't got the chance to say anything to some of the new
people that have gotten on. Don't seem to have much time with Fred
and Hannah to take care of. I don't know if I will ever get to
reading all that has been on here for the last few weeks that I
wasn't on to read.
Hope everyone is doing ok. How are you Mary? and you Mark & Judy and
a birdie tolded me about Anne, so the letter is in your E mail Anne.
To all my other friends here, I miss you all and think of you often.
Take Care
hugs Vera
Hi Barb
Fred had the jls at night. It would wake him up out of his sleep, the
Neuro put him on the Clonazepam for this Jerky. It seems to help.
Maybe you could talk to your doctor about it.
Hugs
Vera
I must be gifted as well. Marilyn in TN
Dawn;
Hi, Mary Ann here from MN. Dawn, my mother, Mable, can not wear knee hi's or
thigh high compression hoses she has to wear the compression panty hose. And
she prefers the closed toe. These are very difficult to put on, and the
aides seem to love to make holes in them. Sometimes they don't stretch them
enough and a clump of tight hose will cut off the circulation and hurt her,
or they don't pull them up far enough and leave her hobbled. Mother says
they make her legs feel so good when they are put on correctly. She also
lays back on her recliner with her legs up and a pillow under them so her
feet are above her heart. Her doc prescribed 20-30 Hg-mm jobst, but ok'd the
Ames Walker comparable type for a lot less money.
http://www.supportstockings.com/where_to_buy_support_socks.htm
hope this helps,
Mary Ann-
Hi all; here's my 2 cents worth.
DISORGANIZATION
IS
MERELY THE SIGN OF A
VERY HEALTHY PERSON
TRYING TO DO MORE IN A
SHORTER PERIOD OF TIME THAN
THOSE OBSESSIVELY TIDY TYPES,
WHO CAN THINK OF
NOTHING BETTER TO DO
THAN STRAIGHTERN OBJECTS
IN DRAWERS AND STUFF
LIKE THAT WHICH ONLY
FEEDS ON THEIR EGOS AND
MAKES THEM THINK
THEY'RE BETTER THAN
THOSE OF US WHO ARE
TRULY GIFTED ! ! ! !
Mary Ann-
OKAY once again you smart people,
My sister, Celeste, is having so much trouble with pain and burning in her lower legs. Does anybody know what this is about? Perhaps pooling blood in the lower legs or those blasted elastic stockings? She has been wearing knee high elastic stockings during the day since the spring of 1999. More importantly, does anybody have any idea what to do about it. The doctor tried her on Neurotin (spelling?) but it made her feel totally drugged. HELP!!!!
Dawn Morley
Hi Pat
Just wanted to let you know I'm thinking about you and Al. Hope you are
both doing better and the ice has started to melt a little.
Sally in KS
Judy and Mark
Glad to see you are fighting your way back to us. Hope things are
starting to settle down a little now and Mark is feeling stronger after
his last ordeal.
Have you been able to go back to your 1/2 day work schedule, Judy? You
are both in my thoughts.
Sally in KS
Kathy,
Has the doctor ever tried putting Dave on two reflux meds. at the same time?
I know there are two types of reflux meds; one type is for decreasing the
acid content itself and the other is to help the muscle in the upper
esophagus close tightly so the acid cannot come back up as easily. I cannot
remember which specific meds. are which kinds, but if you talk to the
doctor, maybe he can start Dave on both kinds at the same time and see if
that makes a difference.
Things which can make reflux worse:
citrus, caffeine, tomato products, chocolate, spearmint, peppermint,
smoking, alcohol, carbonated beverages, tight fitting pants/belt, and there
may be others depending on the person. It'd be good to keep track of the
items that consistently cause problems and stay away from those---or at
least have Dave stay upright (90 degrees if at all possible) for longer
periods of time and eat them earlier in the day (spaghetti for lunch not
dinner).
He should stay upright for AT LEAST 30 minutes after every meal and some
people must stay up longer (maybe even as long as 2 hrs.).
Also, avoid ANY drinking or eating for 2 hrs. prior to going to sleep.
He may need 6 tiny meals a day versus 3 regular ones.
Also, a swallowing study in x-ray isn't a bad idea to rule out other issues
higher in the throat which may be causing problems and he doesn't know it.
However, this does sound like it's mostly, if not all, stomach-related and
the GI doctor is the one who'll have to try to work out something better for
him. Talk to the doctor about a swallowing test in x-ray and see what he
thinks. You'll need a written order for it.
One more thing, make sure he is sitting completely upright when taking
pills; he might need to take them in applesauce, vanilla pudding, mashed
potatoes, or some similar consistency. Does he use a straw? Have him try
NOT using a straw if so.
Hope some of this helps. Please let us know so others can also benefit if
something different works for him.
Rose
myvineyard;
It would be my pleasure to take mother to Mayo in Rochester, MN. Do you
remember me mentioning that long sad story? Well briefly, while mother was
recuperating from what was suppose to be a day cataract surgery, she broke
her leg twice, she experienced terrible hallucinations due to being
overdosed, and she was discharged with the screws coming loose from the
plate placed in her leg after 7 months!!! She then went to Fargo and had her
doc replace the plate for a permanent rod. After the second brake in her
leg, done by a X-ray technician, 6 out of 9 of her children wanted to take
her to Mayo. In fact the local hospital was going to transport her by
ambulance at no charge, but her 3 youngest children talked her into staying
put. Saying in every hospital they have problems and she would be so far
away to visit. I really do try my best with the whole situation. But there
are times I want to just scream. ahhhhhhhhhhhhh!!!!!
Mother is so vulnerable and it is easy to manipulate her. I can not for the
life of me figure out what the benefit it was to them for her to stay here
at the local hospital. I can only think it made them feel good, a power play
sibling over sibling. It really bites to know that my siblings were thinking
of themselves over our mother.
It irritates me just thinking about all this crap. So I think the Mayo is
out of the question unless I want to deal with the power struggle again and
I don't. That's life and we gotta deal with it. Mom has not and will not
appoint a guardian for herself.
Besides we know Mom has SDS, she goes to the Parkinson Center in Mpls.
She was diagnosed in 97. This is probably a lot more than you wanted to
hear. oops,....... you know once I get started.................
With a e-mail name of myvineyard you must raise grape vines. Do you also
make homemade wine?
Thinking about a glass of my homemade strawberry about now!!!!
Mary Ann -
Hi Dave,
My husband has a Light Writer too. We just call it the "box". Mark has had
his since July and wasn't using it much until he had to have his trach put in
about 3 weeks ago. Now he uses it all day long. I'm so glad we have it and
it certainly helps us communicate. Mark sometimes misses the keys too and
I've tried the key guard but he made me take it off.
We'd be lost without it and I find it to be an amazing tool. My insurance
reimbursed 80% for it and we did get it from Zygo Industries here in the
States but it was manufactured at the Toby Churchill organization.
Take Care,
Judy Whittaker
The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller
Hi Barb
It was a great show wasn't it. Must have cost a fortune!!!! I have to sometimes wonder if all the money Aussie spent on fireworks was put to research!!!! I do love fireworks though.
Love Anne
Still 2000 here in Texas. I saw the fireworks at Sydney today. Quite a show.
Barb
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Yes we are
Oh he is a silly billy isn't he Michelle!!!!! LOL
We were still wearing t-shirts and shorts at midnight, feel sorry for you
frozen people.......
Oh so do I ! Luverly weather here isn't it Michelle!!! Ohhhh so warm!!
LOL
.we saw the news footage with all the big dumps of snow catching people
unawares.
before dinner!!!!!
Love from Anne
Yes, he goes to Oklahoma City V.A. Medical Center Its a great place!!!!! I
think t there are some other veterans in the Group, but I can't remember the
names. We are lucky that we only have to drive across town. Some other
patients are from out of state. Take Care, Pat
Hi Bernice, I know you are right, and I know that you know what a tough
decision it is. We want what is best for our loved one, but we have to let
them decide for themselves too! Today the Neuro. came in and talked to us for
a long time. Told Al that he was slowly wasting away, loosing weight and
dehydrating and that was a very slow and painful way to go, he explained how
the PEG was put in and how much he would benefit from it. So Al has decided
to do it. I think they are going to do it tomorrow. Also, the DR is talking
about putting him in extended care and having P.T. work with him, to try to
get some strength back. I feel like this is a good thing to do, and Al does
too. Thanks, and God bless you for caring. Hugs, Pat
Using food coloring (usu. blue) in liquids and foods is common practice when
doing a swallowing study in the person's room. Many times, suctioning is
done afterwards to see if blue coloring comes out of the trach area. If so,
or if the person coughs up blue in their phlegm, aspiration is suspected.
However, to actually SEE where the food/liquid is going, a swallowing study
in x-ray is needed.
There's no set time frame for repeat swallow tests. Things can change
though, and sometimes quickly (over a few months usually), so a repeat
test/tests may be necessary. Repeating swallowing tests is especially
indicated if lungs become/remain congested, a temperature is noted, a
decrease in overall thinking status occurs, or an increase in white blood
count is noted as these may be signs of aspiration (liquid and/or food going
into the lungs). Remember, aspiration can be silent, meaning the person
does not cough or choke or APPEAR to have any problems but IS actually
aspirating.
Rose
Louise,
My dad gets his meds sent via mail through the VA. This has saved my
parents HUNDREDS (maybe $600) PER MONTH. It is really worth it if you
haven't gone that route yet.
Rose
Pat,
I've read on and it's good news that the speech therapist feels Al can
continue to eat by mouth and that all the tubes are out for now. However,
someone brought up a great point about discussing the tube. You say below
Al doesn't want a permanent feeding tube. Usually, PEG and G tubes (both
go into the stomach and the tube sticks out of the belly) are put in for
permanent or at least long term needs. NG (nasogastric) tubes are usually
put in for temporary placement. These go into the nose then down into the
stomach. The tube sticks out of the nose. How does Al feel about having a
feeding tube placed if the predicted outcome of speech therapy (while having
a tube) would be favorable enough to think he could eat SOME types of items
by mouth?
Just something to talk about.
Is the speech therapist continuing to work with Al and you on strategies,
diet levels, exercises that are best for Al right now? If not, ask to see
the speech therapist again or just call her/him to discuss what the future
plans may be.
Glad to hear Al is doing better and that you can relax more now.
Take care,
Rose
Lea,
My mother had PD for 27 years. The last six years she lived with us
because she had reached the point where she could no longer take care of
herself. When she first moved in with us, she was having a lot of
problems with hallucinations. She could not distinguish between what
she had dreamed and what actually happened. She would swear that people
who had been dead for years were on her TV talking to her. She would
have conversations with people who were not there, while setting in the
room with us.
We took her to a neurologist and found out that the GP who had been
treating Mother had been over medicating her which was causing her
problems with hallucinations. Working with the neurologist and changing
her medications we were able to get rid of the hallucinations for a
while, but eventually over the years they were still a problem off and
on. Finding the optimum dosage of sinemet was like chasing a roller
coaster, when the hallucinations would start getting bad, we would
decrease the dosage of sinemet by one half a pill each day. This would
work fine for a while, but then she would start getting stiff and have
trouble moving, so we would add the 1/2 pill back. The cycle kept
repeating forever. It was very frustrating but the neurologist told us
that it was like trying to hit a moving target and there would probably
never be a dosage that would not have to be adjusted occasionally.
The sinemet was definitely a factor in Mother's hallucinations.
Jim Parsons from Arlington TX
Dear Lea,
My husband Bill is on a very low dose of sinemet (only 2 25/100 per
day) plus 2 500mg amantadine a day. Both of those medicines can
cause hallucinations; however, I agree with Bill Werre about checking
for infection. Whenever Bill gets really wacko, I can be almost
certain that he has a urinary tract infection. He uses an in/out
catheter and although we try very hard to be scrupulously clean, the
infections do occur once in awhile even though he is on a preventive
dose of amoxicillin.
Marie Fox
--- In shydrager@egroups.com, Raymond Werre <bwerre@s...
Bill,
I have been reading these mails since e-groups was formed and before
that via the archives over the internet and until now have not been
able to respond because I didn't have a PC at home. My wife Chris
was dx'd 8 years ago aged 47 which I think was the age your Charlotte
was dx'd. Chris's speech is now very quiet and slurred. She also
finds it difficult to speak slowly, everything seems to be going so
fast. She is having some Speech Therapy in fact the lady is coming
next week. I have printed some of the speech exercises from the group
and one of our Care Ladies puts Chris through her paces. Anyway
enough of the history for now the reason for this e-mail is your
request for info on Speech devices. We are in the UK and via the
Sarah Matheson Trust have obtained a Lightwriter and printer (a small
tallyroll device). The Lightwriter has a double sided display and
qwerty keyboard which is approx 7cm by 23 cm and we have found it
quite useful in the past. It has a number of 250 char memories where
you can store useful phrases and when typing it can predict the words
you are trying to type thereby saving the user having to type all
words in full. One problem Chris has is that because she is sometimes
very shaky she hits the wrong keys. I think that this can be overcome
by recessing the keys with some kind of keyguard. As I say we have
used this for a while and if you think it could be useful I could
scan in the manual and send you a copy as long as there is not a
copyright infringement. Thanks for all your previous info this group
has been great for us.
Dave
Hi all.
Back about 2 months ago someone sent an email to the list about Gore being
responsible4 for the US reducing it's missle capability. Here is the real
story and look who signed the treaty:
1993: Start-II Treaty Signed
The huge number of nuclear weapons produced and maintained
by the United States and Russia has been regarded as both an
economic waste and a threat to world peace. Both sides
recognize
that a reduction in the number of nuclear weapons is
desirable, but
the process has required complex negotiations. Carried out
through
the Strategic Arms Reduction Talks (START), the negotiations
finally resulted in the Start-II Treaty, signed by President
George
Bush and President Boris Yeltsin in Moscow on January 3, 1993.
The treaty calls for the elimination of about two-thirds of
each
country's long-range nuclear weapons, and was ratified by the
U.S. Senate on January 26, 1996, and by the Russian Duma on
April 14, 2000.
The provisions of the START-II Treaty:
http://www.fas.org/nuke/control/start2/
Text of the START-II Treaty:
http://www.stimson.org/rd-table/startmf.htm
Don't believe everything you read on the internet or in hate emails.
Take care, Bill and Charlotte
Hey all in the Atlanta area,
Tom also lives in a rehab center or nursing home. Bet it has handicap access
and a meeting room that you could all meet in a corner. Tom, get all these
people to come see you.
Take care, Bill and Charlotte
Barb Pond,
If you have not been on Sinemet for months and you still have Restless leg syndrome (RLS), it is not caused by the medicine. Parkinson's can cause tremor and many MSA patients complain of RLS. Dyskinesia is usually head and/or arms and upper body movement. I don't think Sinemet causes the RLS. We don't mind a little dyskinesia as long as she gets some movement back from the rigidity. For MSA, relief from rigidity is the biggest benefit from Sinemet. I don't know if it would help with RLS. Do you feel like your mucsles are tight all the time?
I'm not sure, but I don't think you are supposed to come off Requip suddenly (unless you were only taking one per day).
Take care, Bill and Charlotte
Dear Bill and Charlotte,
Thanks for replying to my note. I read the letters a long time
before I wrote.
You mentioned OPCA I am not sure what that is.
You mentioned liquids He get about 48 0z /day recommended amt.
We just had an episode a few days ago. Dave fell and hit his head and has
a crush fracture of his right thumb.Has a cast up to his elbow.Has trouble
eating so I have to feed him.He seems ro be very unsteady on his feet since
he fell so PT is going to come in again.
I always hope that things will get better
Jane & Dave.
Hi Mary,
Thank you for answering my questions about Warren's first symptoms. I
really appreciate it. I am now working away, and so will probably not say
much more for a while.
Thanks to everyone for your input...Checking out for now, but I'll be
reading and learning.
Jane
Tom Burt <Turboom@...
starting up a support group in the Atlanta area for awhile now. Get in
touch with him if you think you'd like to attend or help him out in
organizing it in some way. So far I don't think there has been enough
interest.
Take care,
Pam
I was recently sent this by a friend. I thought it might be of interest to some
of you:
CVS Pharmacy has removed all products containing Phenylpropenolamine
(PPA) from their shelves. This was seen on the news both last night
and this morning. Stop taking anything containing this
ingredient. It has been linked to increased hemorrhagic stroke
(bleeding in brain) among women ages 18-49 in the three days
after starting use of medication. Problems were not found in men,
but the FDA recommended that everyone (even children) seek
alternative medicine.
The following was extracted from their webpage:
The Food and Drug Administration (FDA) has issued a public health advisory
concerning the risk of hemorrhagic stroke to young women associated with
phenylpropanolamine (PPA). It has requested that all drug manufacturers
discontinue selling products containing PPA.
PPA is an ingredient used in many over-the-counter (OTC) cough and cold
medications, nasal decongestants and weight loss products.
(Please refer to the list below for specific products.)
Even if you have already used a portion of the product, you can get a full
refund.
For information about how to do that, contact the customer service
department of
CVS Pharmacy on their website http://www.cvs.com/otherCVS/drugDisclaimer.asp
.
Affected Products
NOTE: These lists of over-the-counter products are informational only,
and are not intended to include all products containing PPA.
PRODUCTS BEING PULLED
ACUTRIM 16-HOUR TABLETS
ACUTRIM GUM
ACUTRIM MAX TABLETS
ALKA SELTZER + COLD/COUGH
ALKA SELTZER + COLD/SINUS
ALKA SELZTER PLUS CHILDRENS
ALKA SELTZER PLUS COLD
ALKA SELTZER PLUS COLD
ALKA SELTZER PLUS COLD
ALKA SELTZER PLUS COLD, CHERRY
ALKA SELTZER PLUS COUGH/COLD
ALKA SELTZER PLUS COUGH/COLD
ALKA SELTZER PLUS NT
ALKA SELTZER PLUS NT
ALKA SELTZER PLUS COLD, ORANGE
BC ALLERGY SINUS POWDER
COMTREX DEEP CHEST
COMTREX FLU DAY/NIGHT
CONTAC CAPSULES
CORICIDIN D TABS
CVS COLD & ALLERGY ELIXIR
CVS COLD & ALLERGY ELIXIR
CVS COLD & ALLERGY ELIXIR DM
CVS COLD & ALLERGY TABLETS MAX
CVS DAYHIST D
CVS DAYHIST D
CVS DIET CAPLET
CVS DIET CAPLET
CVS DIET CAPLET WITH C
CVS DIET CAPLET WITH C
CVS EFFERVESCENT COLD TABS
CVS TRIACTING COUGH
CVS TRIACTING EXPECTORANT
CVS TRIACTING MULTI
CVS TRIACTING MULTI CHERRY
CVS TRIACTING SORE THROAT
CVS TUSSIN CF
DEXATRIM CAFFEINE FREE CAPLET
DEXATRIM CAPLET WITH C
DEXATRIM CAPLET WITH C
DEXATRIM EX DURATION TABLET
DEXATRIM GELCAPS
DIMETAPP CHEW TABS
DIMETAPP DM ELIXIR
DIMETAPP DM ELIXIR
DIMETAPP ELIXIR
DIMETAPP ELIXIR
DIMETAPP ELIXIR
DIMETAPP EXTENTABS
DIMETAPP EXTENTABS
DIMETAPP EXTENTABS
DIMETAPP COLD & COUGH
NALDCN-DX ADULT SYR
NALDCN-DX CHILD SYR
NALDECON DX DROPS
PERMATHENE - 16 HR TABLET
TAVIST D
TAVIST D TABLETS
TAVIST D TABLETS
THINZ SPAN CAPSULES
TRIAMINIC COUGH
TRIAMINIC CHEST & CONGESTION
TRIAMINIC CHEST & CONGESTION
TRIMINIC COLD & ALLERGY
TRIMINIC COLD & ALLERGY
TRIMINICOL C&C
TRIMINICOL C&C
PREVIOUSLY DISCONTINUED ITEMS
Check your medicine cabinet to see if these products are there.
ALKA SELTZER PLUS FLU TABS
ALKA SELTZER PLUS SINUS
COMTREX ND LIQUIGEL
CONTAC CAPSULES
DEXATRIM EX DURATION TAB
DIMETAPP 4-HR LIQUIGELS
DIMETAPP QUICK TABS
TAVIST D
TAVIST D
TAVIST D TABLETS
ITEMS THAT MAY INCLUDE PPA
The following products have undergone a formula change and may contain PPA.
Check the ingredients label to see if a product you have contains PPA.
ROBITUSSIN CF
ROBITUSSIN CF
ROBITUSSIN CF
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Kathy,
I'm a transplanted yankee and after 10 years I'm not
used to this anymore either. I live just outside of
Atlanta (to the north). My FIL in Vermont laughs when
we say its cold, but the houses here aren't built the
same way the ones up north were, we don't even have
strom windows!
Do you know, is there a support group in the Atlanta
area?
Gail
=====
Gail
gsouthwick@...
Hi everyone,
I don't know how many of you are from Georgia, especially south Georgia, which is where I am from. I know I am not going to get much sympathy from you in the northeastern US., but I am freezing down here. We are not use to this kind of cold weather. The temp last night was in the teens. High today of 46. I don't even own a big overcoat, never need it.
I feel for yall in colder regions. We thought we were going to get snow Monday PM but we didn't.
Keep warm, Kathy T.
Bill and others,
I am not clear on the relationship between jerky leg movements (JLM) and the
taking of Sinemet.
Does Sinemet help decrease or increase JLM? Seems there is evidence of both.
I took Requip last year for several months to no avail for P'isms and when
Dr. switched from that to Sinemet (went off Requip cold turkey), my legs
twitched violently for about 2 nights. Don't think I had JLM (or RLS) while
on Sinemet but only stayed on that drug until Feb. '00. Went of that one
gradually.
Now my legs jerk every evening when I sit to watch TV and when I get in bed.
I am not at moment under care of a neuro, only Fam. Phys., but am thinking of
having her put me on Sinemet to control JLMs. But Bill, you say Sinemet
caused JLM in Charlotte.
Appreciate input on this.
Barb Pond in B'bg Va
The Parkinson's Association of the Rockies is planning an MSA/PSP
conference in April in Englewood (Denver), Colorado. As more details
become available I'll pass them along.
Hugs,
Pam
She has been taking Sinemet for nine years, but her dosage was
increased several months ago. The hallucinations had been getting
much, much worse as time passed, starting this past Friday. The
doctors are also checking for some kind of infection; she's not
showing any symptoms but they have been checking her blood for an
increased white cell count.
Thank you for your help!
Some psychosis can be a direct side effect to the Sinemet. The hospital should
be able to sort this out if this is, in fact, the cause of her recent trouble.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
My mother has been hospitalized as she is seeing things and people
who aren't there, and interacting with them. Her doctor thinks it
might be too much Sinemet. Is this really possible? Are there other
alternatives? I work and can't give up the job to sit in the hospital
all day waiting for the doctor ... so he talks to mom and she doesn't
remember much of anything. I am planning on leaving a list of
questions on her chart today so at least we can communicate that way.
Comments, please?
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
My mother has been hospitalized as she is seeing things and people
who aren't there, and interacting with them. Her doctor thinks it
might be too much Sinemet. Is this really possible? Are there other
alternatives? I work and can't give up the job to sit in the hospital
all day waiting for the doctor ... so he talks to mom and she doesn't
remember much of anything. I am planning on leaving a list of
questions on her chart today so at least we can communicate that way.
Comments, please?
Perry,
It actually stands for:
Percutaneous Endoscopic Gastrostomy
Which is placed from the inside out through the throat. But we use it for any
feeding tube including the ones that go in from the outside and are held in
place with a balloon which they blow up with salt water once it is in the
correct location.
For more info try this site:
http://www.lib.uchicago.edu/~rd13/hd/tube.html
Take care, Bill and Charlotte
Mary Ann,
The internist is doing the right things. In checking her carefully for
pneumonia and starting speech therapy, he is working on the symptoms which are
worst at this time. If they show nothing ask about other types of infection as
MSA patients are prone to weird infections of blood and even yeast infections.
But it sounds to me as if he is already looking for something with the upper GI
series. Remember this type of doctor deals with old people's diseases every
day.
Speech therapy will help with swallowing problems, if she does the therapy
daily. When you go to see her run though the exercises with her, especially on
days that she does not see the therapist. Watch for things like does she
swallow before taking in a breath, then breath ii and speak several syllables,
then start over. Our therapist works on that with Charlotte, and Charlotte has
less problem with the phlegm. She should do the hard swallow first, before
taking in a deep breath. It is like learning to speak all over, because you
have to concentrate hard on each phase. Be prepared that it will take longer to
make sense of what she says, but it is worth the effort. As kids we learn to do
this without thinking, because everything works by reflex
Remember, MSA patients can only do one thing at a time. We learn bad habits all
our life and get away with eating and talking at the same time, but when things
don't work automatically we have to think through every move.
P.S. If you download Netscape 4.7 something and use it for email - it has a
spell checker in it and it's free. If you don't have download capability, you
can get it on CD-ROM for very little. Eudora software also works well, but is a
little more expensive, but internist was spelled correctly :o)
Take care, Bill and Charlotte
What does PEG stand for? I have been able to figure out what the function
of the PEG tube from is reading the various messages. As you can see, I am
relatively new to MSA and all that it entails. Many thanks.
Perry Sennewald 804-244-0018
Hi all;
Mary Ann here from MN. Mother,(Mable)needs to see a doctor. I just
don't know what TYPE of doctor to set her up with. The problem is, we
have no faith in the local clinic and hosptial. It's a very long sad
story. So Mother sees a Opthamologist in Fairview, MN. about 180 miles
away. She also goes to the Parkinsons Center in Mpls,MN again almost
200 miles. She has seen a Orthopedic doc in Fargo and chooses Fargo as
her primary care which is about 55 miles. The doctor contracted with
the Nursing Home is a Internist (sp). He has recommended an EKG, chest
X-ray and lab work. He wants to rule out pnemonia. It seems like
everyone at the Home has a cold, coughing or a running nose. Later to
follow Ba Upper GI...? To try to get the bottom of the phlegm and
spitting-up problem. Mother has been having more food getting stuck in
her throat. Another Internist or a Neurologist or what?????
Mother is now getting speach thearpy!!!
Ps..thank you for the 'Ames Walker' link, what a savings on
compression hoses. wow!!!!!
I wish this site had a SPELLING CHECK. sorry
Mary Ann-
Your computer mail window should have a spell check if it is W98 or Netscape.
Up above your letter there should be a Spelling icon. Click it and set it up to do the spell check for you before you mail your letter.
Have fun.
Sorry your mama is so sick. Keep an eye on her. You do not want her to strangle or get the food down in her lungs. That is really a big pain. Very dangerous too. SMALL BITES at all times. WELL CHEWED or in the food processor. THICK consistency.
It is so cold up there I would be surprised if you did not have sick folks in the house.
I am sending you some sunshine.
Keep warm. 21' here tonight in Arlington, Texas
[INLINE]
Private enterprise, maybe?
Tie in with the gov and get restrictions and limitations and tag on?
We were sorta of the same way. I can smell mold and mildew a mile away, but
he could never smell it. The same thing with a rose or gardenias. Thanks
for your reply I am sorry to hear of your loss. You may have mentioned it
in previous posts, but sometimes, I am unable to read all messages. I know
that we have a tough road ahead of us.
Marilyn
If you are only talking about a couple of steps in several different
areas, why not use a portable ramp. They are available in several
lengths. God Bless Carolyn
Hi all,
Here is a look at why medical research should be funded by the government. If
this private sell out had occured, they would not have shared the data. With
government data it is shared with all at no cost which spreads the word faster
and gets more down. If the private company had succeeded in taking control, it
would have meant big bucks for them and we would be the losers.
http://www.wired.com/news/lycos/0%2C1306%2C40941%2C00.html
Take care, Bill and Charlotte
Kathy,
Have they tried Prevacid or Prilosec? They work well for most people. If not things like Zantac (ranidine). Pepcid, Tagamet often work.
Take care, Bill and Charlotte
Hi everyone,
Hope you are had a Happy New Year. I have a question I hope you can help me with. Dave has had reflux for years. He has been treated with a number of different meds but the gastric reflux continues to get worse. HE has lost twenty pounds, he weights 218 lbs. His appetite is half of what it use to be and some times, when he is eating, he has reflux so bad that he will not finish his meal. Not only does acidic foods and fluids come back but also water and I have even seen pills. He has problems with swallowing as most Msa pts. do. I have always blamed his condition to GERDS, Now I know different.
Since none of the meds has worked, do any of you know of any other treatment we can try? I have told his doctor of about this but no other options for treatment has been given to us.
Thanks, Kathy Thompson
Hmm... I'm not a doctor. I don't know how the eye is controlled and how the
voice is controlled and how they interrelate. But they certainly seem to be
interrelated with me! I have double vision but only one eye sees .. my
doctors think this is a result of increased nystagmus ... due to cereballar
problems ... as is the speech.
But remember, this is just my experience.
Regards,
=jbf=
John B. Fisher
hi john: sounds logical to me, even though the neuro-opthamologist
disagreed...thanks for your reply..regards, jerrie
Bill And Bernice, Thanks for telling me your experiences with the peg! It
gives us me sort of idea what to expect. The speech therapist also told us a
little about it today too. She said, she wouldn't recommend it yet, but we
needed to start giving it some thought, because it was very likely to be a
decision in the near future. For now, she recommended mostly purreed foods
and very small sips of liquids, but lots of liquids. Bill, we wouldn't have
to worry about taping to Al's chest------ No hair there!!!!!
Anyway, he is much better today, took out all the tubes and moved him to a
regular room. I will sleep much better tonight! Thanks to you both, Pat
Marilyn in Tenn.
My husband Ken lost his sense of smell very early in the progression of the
disease. Before we really knew what was wrong. We teased him some about it
at the time, but finally came to realize he had actually lost his sense of
smell, and as far as I know it never came back.
Bernice wife and cg to Ken / dec. 06/23/00
I am sure you are right Bill, about the peg tubes. We had to wait 2 and 1/2
hours for hospice to find a doctor to tell them to take him to the hospital,
(it was a weekend) and then 3 hours more for an ambulance, and then another
3 hours or so in the ER.
One hospital emergency room was closed due to overcrowding, and the other
told me they had 6 traumas, one after the other, after we got there, so we
kept getting shoved back to the end of the line, and when the first doctor
attempted to replace it, and couldn't - he called a gastro surgeon to come
to the ER but that surgeon was in surgery so we had to wait for him about an
hour. When he got there 3 of them worked on him but said it was impossible
to reintroduce it through that space, so they would have to wait until Mon.
That is when they found the blockage in the esophagus and said they could
operate, to see if that would help, but none of us, including the doctors
thought he would survive an operation, so the decision was made that he had
suffered enough and we would have to let him go.
The original tube was in over 3 years without a replacement, but each
time it ruptured or sprung a leak along the tube, I would cut it off some
more and finally it was only about an inch long and leaking so we had to
have it replaced with a gastro replacement, and that is the one which fell
out. I believe it also, must have caught on the wheel chair or Hoyer lift
as I was getting him up, but I didn't notice it until food started running
out on the floor. I told the doctor if someone had told me that had to be
replaced within an hour, (as they told me in ER) I would have done it
myself. I like you, felt I had worked with him so long on everything, I
would not have hesitated to try it. But I thought since it had been in
there for almost 4 years, it would be well open.
Sadly, it wasn't.
Bernice
I thought of the wonderful members of this group when I read the following:
Life is not the way it's supposed to be.
It's the way it is.
The way you cope with it is what makes the difference.
...Virginia Satir
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Bernice,
We live 10 minutes from the hospital and our surgeon's office is right in the
hospital. Even if I have to dress Charlotte and get her there it rarely takes
more than an hour to get there. Once the PEG is in place, a channel forms
around it and you should have at least 12 hours. Charlotte has averaged a
replacement 3 times a year, since we got it. The first one got caught in the
wheelchair and for that reason, I prefer the shorter ones.
Once we actually had to wait on a weekend for about 12 hours. At this point, I
think that I could replace it myself. I have watched and held things so many
times. The surgeon is a specialist in stomach and gastric operations and is
very good at explaning things to us. The first time he replaced it, the ER
nurse did not understand what he wanted her to do and I showed her. The next
time he told the nurse to keep out of the way and had me help. I know just how
far it needs to go in, what angle and where the flange should go.
Take care, Bill and Charlotte
Jerrie,
The speech and vision may or may not be related. My husband Rob
developed double vision after he was diagnosed, and we ultimately
found out that he had become nearsighted in one eye and farsighted in
the other. He had double vision because he couldn't focus properly.
Once he got corrective lenses, the double vision problem went away.
He now has 2 pairs of glasses, because they felt that with the SDS,
his brain wouldn't be able to adjust quickly enough to make bifocals
work well.
I should point out that he was seen my a neuro-opthamologist, who
discovered all of this. He was referred to him by his autonomic
neurologist. We are very fortunate to be located near Boston, with
access to a major medical center. I'm not sure that we would have
known about this (or about the SDS for that matter) as quickly were
it not for the excellent care Rob has received.
Carol & Rob, Lexington, MA
Hi everyone: Bob had double vision for 3 months, and then 2 months later
had a detached retina, which required surgery. This was about a year
before msa dx. At that time his only symptom of msa was slurred speech,
which the neuro opthamologist claimed wasn't related to the double
vision problem. Any thoughts? regards. jerrie
I am sorry I don't have anything to offer in this department. Just wanted
you to know that I am thinking of you and Al. Hope everything works out
soon. Debbie
Debbie White
dwhite@...
For dry eyes - stuff I have learned. Sometimes an imbalance in estrogen can
bring on dry eyes. Occurs more often in women. Also, age brings on too.
Do not put Murine in eyes (alcohol). Feels good at first then eyes will be
dryer. Use CelluFresh Plus or something like that instead. In airplanes,
close eyes the minute they start the depressure - airplane air will dry out
your hands - think what it does to eyes. If you can close eyes whole trip -
great, any length of time helps. Over closed eyes damp warm washcloths help
too. Airplanes are horrid for dry eyes as is wind. There are all sorts of
goggles that workmen wear that help form shield from wind. And some people
have moisture chamber glasses made for riding in airplanes, etc.
At night put eye lube in eyes (rub gently over eyeball if really bad). Do
not take anything for colds that has novahistamine (drys out eyes terribly).
Read labels of all cold meds to see if additives dry out eyes. Ask
druggist.
To sleep - get those black wrap around sleep aids that you wear on planes to
keep out light. If you like, put soft cotton power puffs (clean) inside
pads (pressure helps keep eyes closed). Tape is a lot of trouble and can
pull lashes off. Plus, it makes people nervous to sleep with taped eyelids.
Or buy those eyepatch shields in drugstore and tape those over eyes (for
people who have had surgery), but the tie around kind work fine and are of
soft material.
Blink all you can - especially while reading and computer work. Learn to
blink more. Schmir tests aren't always accurate because a lot a people tear
up if something poked in eye. Schmirs simply show how much tearing on the
swab or whatever it is. But that is not a normal situation. Years ago I
had the punctum implants (they wear out or fall out eventually) and then
later, had tear ducts cauterized but I had a rare situation which dry eyes
made worse.
However, a good opthamologist can help you. Be careful in mountains (dry
air) and go crazy at the beach (eyes seem to love the moist salty air).
Donna
Hi Nancy,
Warren was off his Florinef and Pramatine for almost 3 weeks while in
hospital and rehab center. It really tired him out and took about a week
before he started feeling better. I think your body will react positively
since your back on meds but it takes time, just like it did when you first
started them. Just keep resting and take your meds.
Sorry can't be of more help, Mary
Hello, all. I'd like to add "a couple of cents" to the emails regarding
moving to a more suitable home as opposed to renovating or acquiring medical
equipment....etc.
A very major point that might be overlooked are NEIGHBORS!!
John and I lived in a two-story town-home. Not at ALL conducive to someone
with his limitations. He, too, did the scooting down the steps on his
butt....crawling on all fours....etc. When he was first diagnosed in 1992 I
considered moving to a ranch style home. Our son was four at the time....and
HANDFUL of four to boot!
After much thought, we realized what incredible and helpful neighbors we had.
Would we be just as fortunate in a new neighborhood? Could I knock on doors
and introduce myself as a full-time working mother with a disabled husband
and toddler that liked to push EVERY envelope and would they/could they mind
kinda 'watching over things' to help me out?? I DON'T THINK SO! <smile
BUT, where we are now, these neighbors were already doing this
unconditionally! I remember a time that John fell in the snow. I was
inside, unaware that he had taken out the garbage. Fortunately a neighbor
noticed something.....turned out to be John laying in 2 feet of snow. He had
been there over 20 minutes.
We opted to get the electric stair seat (7,000, 80% was covered) and had
poles and railings and other goodies installed. It wasn't always easy....but
I always knew that I could run across the street for help in a heartbeat.
Sorry things are rough right now. My mother Joyce was taken off all her
drugs 2 Thanksgivings ago (I remember because she couldn't make it here as a
result). She was much worse -- so rigid and unmovable. She gradually
restarted and things improved. I am sure that any sudden change in drugs
will have a big effect. Feel better. Debbie
Debbie White
dwhite@...
My Husband, Ken, had a peg tube for almost 4 years. It was not place nearly
as low as Bill says Charlotte's is. Waist line garments were no problem as
it was above that. The last couple of years of his life he could not easily
be dressed because of indwelling catheter, peg tube, and bowel incontinence,
so I kept him in a hospital gown. He was unable to go outside any further
than our back screened in porch, so dressing was not an issue. I cut a hole
in his hospital gowns, right at the level of the feeding tube, and poked it
through his gowns for easy access.
One difference, from what Bill has said, was when his tube fell out, it was
9 hours before I could get a doctor to look at it, (because of waiting on an
ambulance, and waiting at the Emergency Room) and they could not replace it.
They told me it had to be replaced within an hour or the tract would be
swelling shut. Several doctors worked on it and tried to replace it - to no
avail. Then they scheduled time in surgery to replace it through the
esophagus, as it had originally been placed, only to find they could no
longer get it through the esophagus as there was a blockage between stomach
and throat. This was the ultimate cause of his death, as we could no longer
feed, hydrate or medicate him without it. He lived only 12 days.
Bernice/ wife and cg to Ken dec. 06/23/00
Jeannie,
We also live in a two story. We had handrails
installed on both sides of each set of stairs, even
the set of three steps down from a landing. DH was
diagnosed a little over three years ago, still doing
pretty well (yes, I see a progression, too), uses a
cane when we go out but not in the house. With the
exception of the occassional rowdy wall or doorway
that insists on jumping into his path, we have hopes
of remaining here for some time. We will convert the
formal living room into a bedroom, if stairs become
unmanageble (or get one of those lifts). We need to
stay here as long as possible as my mother lives with
us (she needs assistance from time to time also) and
we have created an apartment in the basement for her,
so she can be 'independent' for as long as possible.
The handrail thing is an inexpensive fix and is
working well, even for me.
Gail
=====
Gail
gsouthwick@...
This is another one, I have printed the e-mail to keep a hard copy on hand, I
will need to either get the folder from you or give you these e-mails to keep
with the folder.
I hope that you are having a good day!
Jim,
:o) Maybe Peg was just mad at you :o) Charlotte used to dig her toenails into
my ankles, like she was running, but only after she was on Sinemet. She does
not seem to do it anymore. The jerky leg movements in bed are also familiar
(but again only after Sinemet).
How are things in Guam, where it is already Wednesday?
Take care, Bill and Charlotte
=======================================
Hi Everyone, Al got choked eating a piece of bacon Sunday morn. I could not
get it loose. I called 911,because he was near unconscious and not breathing.
Very scary, anyway the medics were there in record time and went to work on
him, had to use a vent tube. He is now in ICU at the VA hosp. They did remove
the vent tube yesterday, still on a little oxygen. Planning a swallowing test
today, also has a stomach tube for meds at this time. I think they are going
to give him pureed food today. I know some of you have already gone thru
this, my problem is that Al says he will not have a permeant feeding tube. So
I need to know more about the PEG. Good and bad points.Sorry this is so long,
but I am pretty stressed right now. I am off to the hospital. Check back
later. Thanks, Pat in OKC
Yes, I would recommend seeing a speech therapist to get specific
recommendations on what may be helpful to him. Ask your doctor for an order
to see a speech therapist for "evaluation and treatment".
I'm sending some general exercises below, but everyone is somewhat different
on which ones they may need to focus on the most. Also, the voice exercises
I just sent to Lori may prove helpful. Even though his volume is fine now,
those exercises have been shown to improve speech clarity too---probably
mostly due to people opening the mouth wider when they speak louder.
If your husband can remember, have him open his mouth wider when speaking
and separate his syllables (Ex: I'm going to the hos-pi-tal).
These help clarity.
Here are the exercises:
Three things I'd want to keep in mind for oral exercises; strength,
flexibility, and coordination.
For STRENGTH,
Use a tongue depressor, popsicle stick or small spoon for resistance. 1. As
you're trying to stick out your tongue, press against your tongue with the
depressor, etc. You can use this same idea in all positions for your
tongue---
2. trying to stick your tongue out beyond the corners of the lips and
pressing back for resistance, etc. You can use this with the lips too.
3. Pucker hard and press back for resistance. Another for the lips, 4. blow
lots of air into the cheeks; don't let air escape through the lips. If
trouble loosing liquid from lips,
5. press lips together firmly (no red of the lips showing) and hold for one
minute intervals. Try holding thin objects with lips only (no teeth) for
longer periods of time (ie. use straw, tongue depressor, thermometer).
6. Make the loudest kissing sound you can (the louder, the stronger your
lips are).
7. Say Coke, cake, cook.... each word with strong "c/k" sounds to get
the tongue to go up in back (this is usually good for swallowing too).
For FLEXIBILITY
The goal here is to get your tongue and lips to move to the FULL extent
possible.
Examples;
1. Stick tongue straight out way beyond the lips; hold for 3-5 seconds.
If you have trouble doing this, wrap a piece of gauze or similar material
around your tongue and GENTLY pull out, stretching slightly and hold. Like
any muscle, don't stretch to a point of pain. (This one's usu. good for
swallowing too).
2. Stick tongue tip into each corner of the mouth. If easy, stretch
beyond the corners, as if getting peanut butter (or whatever) from the
sides of your mouth.
3. Stick tongue up to top lip then down beyond bottom lip as far as
possible.
4. "count your teeth with your tongue"; try to reach every tooth in your
mouth with your teeth.
5. Stick tongue into each cheek and push the cheek out as far as
possible with the tongue. Try to go farther back in your mouth towards back
teeth. (Good for swallowing if the person has difficulty getting the food
out around the teeth)
6. Lick lips all the way around, not missing any part of the lips while
keeping your mouth open slightly. Try to get your tongue beyond the red
border of your lips.
7. For lips, Alternate hard pucker with WIDE smile.
8. Alternate Open mouth WIDE, press lips together firmly.
For COORDINATION
The goal here is keeping consistently strong movements while speeding up the
movement in a repetitive fashion.
1. Move tongue back and forth into each corner of the mouth (make sure
you touch each corner). Speed up as quickly as possible. Keep your tongue
moving consistently, like to the beat of drum that's getting faster.
2. Pretend to lick a popsicle; open mouth sligtly and keep it open. Put
tongue down on chin then "lick" up to top lip. Do as quickly as possible
but make sure the movement is accurate.
3. Lick lips all the way around but speed up as quickly as possible with
mouth open slightly. Don't miss any part of the lips. Change
directions.
4. As some have mentioned, repeat sequences of syllables (mama or
Puhpuh=for lips, Lala or Tuhtuh= tongue tip up, Kaka or Kuhkuh=raising
back of tongue).
Do sets of sequences quickly but accurately; all sounds must be heard.
This is an example of one set to do;
"Puh Tuh Kuh, Puh Tuh Kuh, Puh Tuh Kuh"
To INCREASE SENSATION AND FLEXIBILITY if difficult to do above;
1. Use a toothbrush's flat side and press firmly down in the middle of
your tongue, then try the "c" words...cook,etc.
2. Run the toothbrush back to front on your tongue.....then stick out
your tongue as far as possible.
3. Run the toothbrush down the sides of your tongue diagonally. Do one
side then try to get your tongue to the corner of the lips in the direction
you were rubbing.
You can also use a "Nuk brush" or oral sponges sold in pharmacies. Any
of these things can be put in the freezer or add lemon to them to get even
more sensation.
Pick and choose based on what you have difficulty with, then do the
exercises that you've chosen ten times each, two times each day and see
where that leads.
Work on exercises that are somewhat challenging but not frustrating and
try to work up to the ones that are the most difficult if you can.
Rose
This is an overview of the Lee Silverman Voice Treatment Method:
Contact speech therapists in your area and ask if they have been trained to
do LSVT. The CONSTANT reminder to the patient is to "BE LOUD"
Some of the basics are
1. Take a big breath and hold the "e" sound as long as possible on a
comfortable pitch level and LOUDLY (above conversational level speech).
2. Do a scale on the "o" sound, gliding from lowest to highest pitch
LOUDLY.
3. Make a list of 10 sentences that the person says on a daily or regular
basis and have them repeat or read the sentences LOUDLY.
Do each of the above three times daily.
People who have Parkinson's usually think they are yelling when they first
do this so it's important to give feedback that the loudness level is good.
The practice LOUDLY is very hard to start carrying over into
conversation. After doing the above exercises for two weeks, 3 times a
day, then add
4. Talk for 5-15 minutes in conversation and speak LOUDLY (the patient not
the listener).
The research was found to have the best results when the above items are
done daily for at least 4-6 weeks.
It's really best to have a speech therapist directly work with you at least
on a consult basis so you will have feedback on how loud is appropriate and
if other adjustments need to be made.
For those who have had or may consider doing the Lee Silverman Voice
Treatment method:
videotape for patients of lee silverman's voice therapy----
(available from Wintronix for 59.95 -- telephone: 816-229-0193)
Rose
Hello everyone,
just wondering how long it took from the time you started having balance
problems to having to be in a wheelchair. My husband is having balance
problems but does not use any aide at this point. I do see the progression
occuring, however. We live in a 2 story house with our master suite on the
2nd floor. I know it is just a matter of time before we will have to
relocate, but just wondering how long we have.
Thank you for any help so I can plan for our future.
Jeanie
Nancy,
When Rob went off his meds for 2 weeks to participate in a clinical
trial over the summer it took him about a week to start feeling close
to normal and another 3 or 4 weeks to really get back to where he had
been. It's probably just re-adjustment for you, but a call to the
doctor woouldn't be a bad idea.
Carol & Rob
Hi Aida:
I have back pain at times, too. If I've been on my feet for a while or
especially bending over, my back will start to ache. If I lay down for a while,
it goes away. I've been blaming it on osteopenia - the beginning of
osteoporosis. According to my doctor the florineff can cause osteoporosis and
being that I'm well past menopause my bone density tests show that my upper
spine is like that of a 75-80 year old woman (I'm 57). I've been on a drug
called Fosamax for the last three months which is supposed to reverse the
problem, but it will take up to a year to see much in the way of results.
While I'm here - Since I live alone, I don't know if I snore or act out dreams.
I always wake up in bed and I haven't pumched any holes in the wall or knocked
things off the night table, but I do have some scarey dreams at times. But I
can remember having scarey dreams all my life. I also passed out in school one
time but it was when I was starting a period and I had a lot of pain with them.
Pain can make me feel faint. I also came close to passing out several times
during my last pregnancy (when I was 26).
Linda (Ont. Can.) where the sun is shining for the second day in a row but it's
still cold.
hello everyone,
I have been reading and trying to put pieces together also. My husband has
not had a final diagnosis of MSA, although his neuro. thinks that is what he
may have. His symptoms certainly are similar to many of yours. He will be
flying out to see Dr. Gillman in MI, who I have noticed some have
reccomended on this site.
My husband has been the picture of health pretty much all his life. Always
eating the right foods. He has never been a junk food eater nor has he
drank diet drinks. He has always worked out and taken care of himself, so I
find it ironic that he is the one who has such an illness. He does have
dreams where he yells and lashes out, but these are infrequent and he is on
no medication and never has been. I also have a friend who's husband has
violent dreams of the vietnam war, and he does not have a neurological
disorder. I wonder how much of these dreams are normal or happen to those
without MSA.
Who knows what the cause could be, but the only way to find out is to pool
our recourses and compare our experiences. This site is very helpful to me
and my family and I hope we can put the puzzle together.
Jeanie
My husband`s speech is slurred. Does he need therpy. His volume is fine
Jim,
Yes- my husband has the problem of not being able to
close his eyes completely. This is ironic, in that he
is also unable to keep them open when he wants too!
His problems are because of blepharospasm-he cannot
control his eyelids. For the last 2-3 years he has
been receiving Botox injections every three months to
reduce the strength of the spasms and give him more
control. He has decided that the shots no longer give
enough effect to be worth the discomfort (spell that
pain) of the injections. The neurologist sent him to
an eye surgeon to see if anything could be done
surgically. The surgeon could only recommend
lubricating eye drops during the day and a lubricating
eye ointment at bedtime. He uses Refresh, P.M. (I'll
double check the name if you are interested)It seems
to help.
Gail
=====
Gail
gsouthwick@...
GUYS I AM HAVING A YUCK A.M. SO FAR. I HAD AUTONOMIC TESTING FRIDAY AND
WAS OFF MY FLORINEFF FOR 5 DAYS THEN PROAMATINE 1 1/2 DAYS. THIS
WEEKEND - NOT GOOD. I WAS SLEEPING ALL DAY SATURDAY 'TIL SUNDAY. MY
LOWER LEGS ARE BURNING AND FEET AE FLOPPY . I DON'T FEEL MYSLEF. U
THINK MY BODY IS JUST GETTING BACK TO IT'S OLD SELF FROM THE TEMPORARY
MED STOPPAGE?
NANCY M.
Barb,
Thanks for the comment. We have tried eye drops but not regularly.
Interestingly, Peg was recently referred by her optometrist to one of the
three local ophthalmologists. The reason for the referral was the eyelid
problem. The opthalmologist found too much pressure in Peg's eyes to the
point where he was unwilling to dilate her eyes. Thus he did a laser
procedure to drill a small hole in each of the eyes to help reduce the
pressure. The eye exam then showed no visual problems. At that point the
ophthalmologist concluded that the problem with Peg's eyes in the morning
was probably neurological. Peg also showed some problems with color
recognition. It is unclear whether that is in any way related to the MSA /
Shy-Drager
The ophthalmologist did make one additional comment that I found
interesting. He speculated that Peg was not fully closing her eyelids at
night. Because of that her eyes could be drying out more than they should.
His remedy was to use a small strip of scotch tape to slightly pull the
eyelid down. We have tried this with moderate success. The problem is that
Peg doesn't fall off to sleep right away and is up and down. I found this
interesting in that I haven't heard of anyone else on this list complain of
not fully shutting their eyes at night. Does this ring any bells?
A small triumph: Peg was well enough to play one complete round of duplicate
bridge on Monday night. I was her partner and she did alright. It was the
first time in months she has been able to do this.
Jim and Peg from Guam
From: Barbara <ralsk@...
drop? Barb In cold and snowy Texas.
********************************
*** 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.
********************************
The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller
Hi Barb
Well it's just a thought! I don't know how if it could be though how it could ever be proven?!
Love Anne
Yes, I've thought back over my life since being struck with MSA and often
wonder if certain physical things or illnesses as a youngster had any bearing
on what's' going on in my body now. It is an intriguing angle.
Barb Pond
Hi Rose
Would you please be kind\d enough to send a copy of your voice exercises for Lori's Dad. Thought that I had it but cant find it. Thanks Anne
The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller