Hi all,
Millicent, sorry to hear about Dan, Bill Werre
The only way to get off the list is to send an email from your own email to:
shydrager-unsubscribe@egroups.com
The computer will read your email address and remove it from the list
automatically.
Peg and I are about ten days behind in reading the summaries so we don't
know what has been recently posted. Over Christmas we spent two days at a
local hotel on Tumon Bay for a relaxing time. We also attended a local
Christmas party when we returned home. Peg has been doing a little better
lately though she is having trouble opening her eyelids in the morning and
is sometimes tired. One of the caretakers is staying over five times a week
so I am getting some better sleep.
It is now 12:00 Noon on New Year's Day on Guam. The mainland US is getting
ready to start celebrating in a couple of hours. Season greetings to all
our friends on the ShyDrager list. Thanks to everyone for their ongoing
help and support.
Peg and Jim from Guam
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************
Hey all,
Has anyone used these devices and do they work for MSA patients?
Take care, Bill and Charlotte
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
Mary Ann,
I found out long ago how uncomfortable it is to sleep in pj's or long gowns
of cotton. I find XL T-shirts are good for me as they don't wrap around the
legs when turning.
Also I'd like to pass on some thoughts about clothing in general and hear
from others. I find knits the most comfortable and practical. I've been
wearing clothes from Lands' End for 20 years and find them superior to any
I've ever purchased. They are well constructed, launder beautifully, and
generously sized. A womens' size line has been added in recent years which
makes it possible for us taller bigger girls to find very traditional
conservative clothes without all the ruffles and flourishes so many of the
big lady lines have. Their sport knit pants are great. The polartec socks
are wonderful to wear if you don't like wearing shoes in the house. So warm!
They're on line at landsend.com and are very easy to deal with. They will
take anything back
for exchange or refund even if you've worn it once and don't like it. I use
online service most of the time.
Barb Pond in VA
Hi Barbara,
I appreciate your answers to Jane's questions. Your words should be helpful
to all. No cures, no big answers, but at least some info about what is
happening to our loved ones.
Marilyn in TN
Greetings Sally!
Those are the rolling hills of Kansas that I remember. What a beautiful
picture. Thank you for sharing them with us. It brings back some very nice
memories for me.
Regards,
=jbf=
John B. Fisher
Meg,
I also happened to wonder if you have a history of miscarriages, like my
sister did. I don't remember how many she had...maybe 4 or 5. One was at 5
months.
Hope you don't mind if I am too nosey. It seems you have quite a bit in
common with her. These occurred mostly in my sisters 20's. Although maybe
one when she was about 30.
Dawn
Meg,
My sister also was told her problem was in her head. This is not uncommon.
Out of curiosity how old do you think you were when you first started with
symptoms? And what were they. Developing these problems in your 40's seems
to be unusual.
Sure does sound like you are similar to my sister though.
I agree it is interesting. If you want to ask more questions you could
e-mail at my address dawnmorley@... too.
Dawn
RE: Speech Devices to be Covered by Medicare
"Starting Jan. 2, Augmentative and Alternative Communication (AAC) devices
that generate speech for people with limited vocal ability will be
considered durable medical equipment eligible for coverage by Medicare
More:
Date: Fri, 29 Dec 2000
From: Lew Golinker <LGolinker@...
Subject: Coverage of AAC Devices by Medicare
Dr. Oppenheimer: [.]
The Medicare policy change will go into effect on 1/1/01. All Medicare
beneficiaries who are evaluated by a speech therapist (SLP) and physician
- and who are determined to need an AAC device, will be eligible to receive
one. The draft guidance includes the minimum topics for evaluation and
reporting. There are no mandatory tests or mandatory findings to determine
eligibility. As long as these topics are addressed in the evaluation report
by
the SLP and the MD, and the conclusion is that a device is necessary and
appropriate, then the eligibility requirements are met.
It is my expectation that Jan. 1 will pass before we see the publication of
the final guidance. No matter. There is no expectation the evaluation and
reporting section of the draft will change, and a work-group of SLPs is
developing more detailed information to help clinicians conduct complete
evaluations and prepare complete reports. This and all other updates
regarding Medicare coverage of AAC devices will be published at website:
www.aac-rerc.com. You also may be able to find it at www.augcominc.com
- - at: http://www.augcominc.com/whatsnew.html
It is likely many other AAC or disability related sites also will carry this
information.
Eligibility is only one piece of the puzzle. A second piece is device
coverage: i.e., is the device recommended and prescribed covered for
Medicare
reimbursement? On this issue, the policy has a flaw. The policy covers, at
this point, only "dedicated devices," which excludes computer based devices
such as the Freedom 2000, a commonly-sought device by people with ALS.
PDA based devices, such as those recently introduced by Enkidu Research,
currently are excluded. The Dynavox and Dynamyte (Dynavox Systems); and
Pathfinder, Delta Talker, and Vanguard (PRC) are all covered. The Light
Writer (Zygo-Toby Churchill) and Link (Assistive Technology), also will be
covered. All the digitized speech output devices also will be covered.
We are continuing to work to get the device coverage limitation eliminated.
Hopefully this will be accomplished soon; I realize that people with ALS
don't have time to wait. I will return to this in a minute.
The third piece of the puzzle is reimbursement. Medicare has set what I
believe to be generous reimbursement rates for AAC devices, which I hope
will
lead all the mfrs/vendors to "accept assignment." If so, then the initial
cash outlays by families for their devices will be very modest in relation
to
the device cost. For the most expensive devices, the reimbursement rate is
6475.12, which will limit the cash outlay for a device such as the Dynavox
or
Dynamyte to $ 1,295.02 (equal to 20 % of the reimbursement rate). The
remainder will be paid directly to the vendor by Medicare. For families who
can't afford even the 20 %, there are circumstances in which it can be
waived.
I will be checking with each mfr next week to see whether they will accept
assignment. That information will be posted at the aac-rerc web-site as soon
as decisions are made: http://www.aac-rerc.com/
These decisions are very important because they can/will eliminate the
economic barriers to AAC device access.
Lastly, a non-essential point: I anticipate that Medicare will change the
category label from "speech-generating devices" (I can't tell you how or why
they came up with this, as compared to AAC devices), to "voice output
communication aids." I thought the whole idea was silly, but someone thought
it a necessary change.
In sum, there are no limitations on your ability to identify individuals who
need AAC devices, and the reimbursement rates are sufficiently high to allow
us to anticipate there will be no financial barriers to access. However, we
still have work to do to get Medicare's agreement to cover all the devices
that may be most appropriate to meet individuals' needs. I will be directing
all my time and energies to that task after the first of the year.
[.]
Lew Golinker
Director, Assistive Technology Law Center
Fleet Bank Building, Suite 507
202 East State Street
Ithaca, New York 14850
607-277-7286 (v)
607-277-5239 (fax)
lgolinker@... (e-mail)
Summer 2000/View from our farm ground
Happy New Year To All Our MSA Family
We are holding our own for now. Elmer fell again last night but seems
to be doing ok today.
It's cold, cold, cold with a light snow cover and sunshine
Much Love To All
Sally
Gail,
Welcome to the list. We do know about the trials and tribulations of MSA.
My wife was in a wheelchair at about 5 years (1995) past a diagnoses of
Parkinson's (1990) and about 6 months past a dx of MSA (1995). However that was
7-8 years past first signs of the disorder (1987-88). 6-9 years is not a
reasonable timeframe. A more reasonable time frame is 2-27 years with about
half living more than 9.5 years from diagnoses. Stick with us and keep us up on
what is happening and we can probably give you pointers that will help get a few
more years than "average".
Things that will kill MSA patients are:
Infection (all types, urinary tract (UTI), pneumonia, blood and yeast) Warning,
MSA patients often run a lower than normal temperature (as low as 96 deg) so it
is good to take temperature and BP daily, so you know the norms. Then if a
doctor says he has no fever so he has no infection, you can tell hem the norm
for your husband is 96.2 and 98.6 is more than 2 degrees above that - so he does
have a fever.
Dehydration from not drinking enough. MSA patients tend to have more problems
swallowing liquids than thicker substances. Therefore they do not drink
(swallow) enough liguid and get dehydrated, this can upset the blood chemistry
and even cause a UTI.
Falls! If the balance fails, a wheelchair allows a lot of mobility here in the
USA. A fall can be deadly. A broken hip can take years off you life and
quality of life. A broken skull can also hurt your chances.
You may find some other people in your general area. We have a fairly good
group that keep in contact via phone, even though they do not attend meetings in
the Metro Washington, DC area. Eighteen months ago, there were no local support
groups here other than this list. Then I think Charmayne had the first one in
Oregon, we now have many and more starting up all the time. Some are formal
with meetings every month, others are informal and meet when they can. Our
group has had the best attendance at parks, in good weather.
Things that help MSA:
Physical and speech therapy
Lots of liquids
Good nutrition
Some symptoms can be helped with medicines
Hope this helps, Bill and Charlotte Werre
Gail,
Hello and welcome to the group. You will find lots of useful
information here - I suggest that you check out the links on the left
side of the egroups main SDS page - you'll find lots of useful
information.
My husband, Rob, was diagnosed with Shy-Drager Syndrome in March of
1998 at 51 years of age. The thing that led to the diagnosis was
passing out, which we now know is due to orthostatic hypotension. He
had many other symptoms, however, many of which we just kind of
glossed over as age or stress related. He started with violent
dreams, which were diagnosed as REM behavior disorder back in the
early 90's. After that diagnosis, he was started on klonopin, which
controlled the worst of the thrashing around. He was also diagnosed
with sleep apnea, and started using a CPAP machine. (He hates the
CPAP and did not use it regularly until recently, when I began to
FORCE him to use it. Told him I did not want to wake up with him
dead next to me.)
Throughout the mid to late nineties, he complained of many symptoms
we now know are related to MSA; constipation (which we blamed on poor
diet and stress), bladder control problems (blamed on getting older),
erectile dysfunction (also blamed on getting older and stress),
cramping in his left foot and leg (blamed on shoes), slight tremor
(too much coffee?), soft voice -- you get the drift. Nothing too
severe until he started passing out. The same neurologist who
diagnosed his sleep problem diagnosed the MSA. I'm fairly certain
she had suspected it for a while, but was waiting until the symptoms
became more apparent.
Rob's symptoms are fairly well controlled by the plethora of
medication he takes. He is not able to work because he's just too
slowed down and can't cope with stress at all. Everything, including
cognitive function just takes longer. Some days he feels lousy.
Other days he seems almost "normal". He is able to enjoy many
things - we take walks together and go to movies, he reads and
watches TV, and we travel. Although he feels "unbalanced" sometimes,
he hasn't fallen, and for that we are grateful. He definitely lacks
stamina, and in spite of exercise, has lost muscle strength and
muscle mass.
I've been part of this group since shortly after Rob was diagnosed,
and I've learned a great deal. Mostly, I've learned that every
patient is different. The statistics are frightening, but based on
this group, many people are able to live much longer that the
statistics would lead you to believe, and with a better quality of
life.
Keep participating in this group! There are many wonderful people
here and they are always willing to help.
Carol & Rob
Lexington, Massachusetts
Laurie,
If over the counter remedies are not sufficient, ask her doctor about
Miralax. It is a prescription, and it the same substance as is used
to clean the colon for a colonoscopy. Several people on the list use
it, and it is effective without causing damage to the colon, as many
of the over the counter laxatives can when used on a long term basis.
My husband, Rob (age 54, diagnosed 3/98) uses Miralax and it seems to
work pretty well. He has found recently that even with the Miralax
he has to add stool softener. (He uses Surfak, as recommended by his
doctor.)
I agree with what others have voiced here - constipation is not only
uncomfortable, it can lead to an impaction, which can be life
threatening.
Carol & Rob (writing from snowy Lexington, MA)
Hi Gail and Welcome
I just started this group last week and it seems wonderful. It's
comforting to know that these people know what you are going through and
speak from experience. My mom was diagnosed 5 years ago with what they
thought was Parkinson's, but she was not responding to the meds and was
having blackouts all the time, unable to walk etc. they then diagnosed with
SDS two years ago. She is completely confined to a wheelchair, cannot move
any arms, legs, etc and cannot talk anymore. It is very sad, although I do
think she has deteriorated quicker than most SDS patients. Some have it for
years. It really helps to ask any of these people who are going through the
same things. Take care and keep writing.
Laurie
Hi Jane, good luck with your book.
My Warren first showed problems with dizziness, lack of balance and fear of
driving,slowness in walking (he shuffled along like Charlie Chaplin) these
were things we noticed about 3-4 years ago but he wasn't dx'd until Dec
1999. Also his short term memory was starting to go, he had had angina a
couple years before and the Dr's told him that this happens sometimes and it
would return, it didn't!
After he retired and we settled down after 4 months of travelling he started
have dreams and talking in his sleep, which he never had done before, and we
laughed about what he said in his dreams. He really tried to act out a lot
of things but nothing that would harm me. Until now we didn't think much
about it but realize it was probably the start of this. This was 12 years
ago. Now he moves a lot and legs run and talks in a jumble that is not
understandable.
Hope this helps
Mary
Hi Louise,
The doctors says this is ok, because she hardly eats, she's had enemas
and those really don't even help. She has gone from 140 lbs to about 90lbs.
I will reiterate to my father to check back with the doctors about her BM's.
Thanks.
Laurie
hello Jane,
It sounds like a wonderful idea to write a book. If you are going to include
some science along with all these wonderful anecdotes from the MSA patients,
though, you need to get some basic understanding of the Nervous System.
A simple book, such as a nurse's Neurology book would help you.
Firstly, the glial cells are not stimulating neurons, i.e. they do not directly
send impulses to other neurons or to muscles. Glial cells are supporting cells
of the nervous system, and there are several types.
Neurons that send impulses do so by way, mostly, of
neurotransmitters---chemicals that cross the space to other neurons or to
muscles. There are many types of neurotransmitters, from the first and well
known, acetylcholine, to norepinephrine to dopamine and to less known smaller
molecules called neuropeptides. Acetylcholine and norepinephrine are the main
neurotransmitters that supply the peripheral striated muscles and smooth
muscles. Dopamine is a neurotransmitter in the brain, among many other
neurotransmitters. It is especially present in the basal ganglia, a part of the
brain that deals with motor function, and dopamine there is what is missing in
Parkinson's Disease.
Messages from the brain get sent through many relay sites to the final
peripheral nerve that stimulates muscle. So malfunction can occur in the brain,
at the relay sites, or at the final neuromuscular junction. This can be caused
by a lack of neurotransmitter, or by a deficit of neuronal capacity.
I'm sure others can answer you specific questions more completely, but I can
address part of them. Some can't be answered at all.
1) There are researchers who are really hot about inclusions and about ASN. Read
their papers, but don't believe everything you read. This may just be a
coincidental finding, as aluminum was in Alzheimer's brains.
2) Cytoplasmic inclusions can not be thought of as tumors because they are in
individual cells and don't make up a mass of cells.
3)I don't think that anyone knows this.
4) Right now there is what I consider an artificial division in types of MSA
based on regions of the brain affected. Since there have been few autopsies to
show that diagnoses based on functional deficits are correct, I believe this to
be yet shown to be a viable division. The MSA web site has information on these
purported types.
5) I don't know.
6) Orthostatic hypotension is caused, as I understand it, because the neurons to
the smooth muscle of the blood vessels do not produce enough norepinephrine to
automatically constrict the vessels, thus not raising the blood pressure to
compensate for standing, as it normally would. In Pure Autonomic Failure it was
thought that the deficit was in the peripheral nerves, yet I have read that in
MSA, the deficit of orthostatic hypotension is in brain control of the autonomic
system (not the same location as the basal ganglia or the cerebellum).
Conflicting ideas.
7.) Ask the experts.
8.) Ibid.
9) The first quote means that synucleins, in very similar forms, are found
throughout the vertebrate kingdom. Their DNA patterns are very similar.
The second quote means they are RELATIVELY abundant in neurons, as opposed to
other cells, like, say, liver cells. And, back to anatomy---the end of a neuron
has special sturctures called presynpatic terminals. Terminals, meaning the ends
of the neurons, and presynaptic, meaning that portion which comes before the
space between the neuron and the next neuron or the muscle. The space is called
the synapse, across which the neurotransmitter chemicals pass.
I hope this has helped some.
Don't be dismayed at the wealth of information that is contradictory, or doesn't
make sense. In research, that is the period in which the most discoveries are
made because there is a big dialogue among researchers, and a sound explanation
comes out eventually.
Barbara J. Woodford, Ph.D., retired neuroanatomist and neuroscientist.
[Jane wrote]
My name is Jane. I wrote to the group already once or twice, a few weeks
ago. I was hired as a caregiver for a man with SDS, three years ago. The
experience had a profound effect on me, and I want to write a book about the
experience, about him, and SDS. I have set aside the next two months to
write, and will see how it goes.
I have been listening to you all for about 6 weeks now, and feel I almost
know some of you. It is a privilege. I have some questions, and surely
more will follow. I hope you wonıt mind my asking. Ask me anything you like
about my background, the tone of the intended book, etcSanything. I have
several goals for this book, but one huge one is to bring attention to MSA,
specifically SDS. I figure attention canıt help but bring money to
research.
Anyway, right now, Iım wrestling with exactly what MSA is, how it is caused,
etc. Following, I will write how it all works as I understand it. Iım
hoping you all can set me straight on the errant parts. Also, I have about
10 questions, and I hope someone (like Bill & Charlotte, the treasure trove
of valuable information!) can help me out.
Thanks a million in advance for any help you can give me. If you feel I am
being intrusive, please tell me, and Iıll buzz off. I just want to
understand as much as I possibly can about this awful disease, and see what
I can create.
MSA AS I understand it:
In normal brain cell function, the neurons (the glial cells?) creat the
messages for autonomic nerve function. Their messages are sent to the
muscles through nurotransmitters. Dopamine aids in transferring information
by keeping the (neurons? nurotransmitters?) sensitive.
Alpha-synuclein is a protein, (ASN) that normally occurs in our brains. In
MSA, ASN is hyperproduced and forms aggregates that attach themselves to
the neurons (glial cells). Now the message cannot be sent because the glial
cells (GC) lose sensitivity, and the GCs cannot "speak to" the NTs. Or are
they just "speech impaired," and the message dies on the vine, or are the
messages intermittently sent?
The GCs eventually die.
Sinemet is levodopa plus a catalyst. Levodopa becomes Dopamine in the
brain. It has the ability to go through the blood stream to the brain,
whereas Dopamine cannot.
Dopamine goes to the nurotransmitters to help bring the message across to
the muscles. The less dopamine, the less efficiency.
Whew! Okay, now for the questionsS.
1.) How are the Alpha-synuclein (ASN) inclusions different from Lewy
Bodies?
2.) Could the Glial Cytoplasmic Inclusions be thought of as clumps, or
tumors?
3.) What malfunctions first: the neurons, or the nurotransmitters?
4.) Specifically, what regions of the brain are attacked in SDS? Are they
always the exact same regions or can there be variation?
5.) What symptoms indicate an Autoimmune Dysfunction?
6.) What exactly causes low BP upon rising? (cellular level)
7.) Where should ASN be in the first place?
8.) Is the intended function of ASN known?
9.) What does this mean? "Synucleins are highly conserved proteins in
vertebratesS"? And this S"especially abundant in neurons and typically
enriched at presynaptic terminals."?
Greeting all,
Thank you so much for the input I have gotten on these scientific questions.
You have helped a lot. Also, yesterday I went to Borders and learned quite
a bit. Better than a library!
I am not planning on writing about glial cells (I understand better what
they are now) or synuclien or any other mumbo-jumbo, because readers don't
really care (except a few specific cases I can think of...!) But you gotta
know what the heck you are writing about.
I will be reading every day (one has to...catching up after two weeks
off-line was a chore. Phew!)
My next question is: what were the first symptoms you noticed? It sounds
like violent dreaming is a big one. What about balance, dropping things,
forgetfulness, or....?
Please chime in with ANY information you think might be interesting or
helpful. Thanks again, and here's to insight, acceptance, and enlightenment
in the new year!
Jane
Happy New Year Anne!!!!
Sorry, I'm about 2and 1/2 hours late for you and Tony :o) (as well as Michelle
and Fordy, the Jim and Peg and many other's down
under). I'm sure you are all sawing logs by now.
Well at 3 PM your time on New Years Day, you can celebrate with us :o) - Of
course I may not make it that late :o) I will be up for
Pam's New Year, but we haven't heard from her, so she may still be out of town.
We have Shane for the evening, so tomorrow will be an
early morning.
New Year's hugs to all, Bill and Charlotte
Laurie,
I, too, would suggest talking to your doctor about the possibility of adding
Proamatine to increase the blood pressure.
I'm wondering about the choking when her legs are elevated....is this
because she's in a recliner which puts her head back when her legs come up?
I would suggest making sure her back is as straight as possible when eating
(prop with pillows, etc. if needed) and can she bring her chin down towards
her chest prior to swallowing?--esp. liquids? --this may help too.
About the bowel issues, I'd definitely agree about having that checked
immediately.
Rose
Laurie, RUN to your MD. Impactions are killers. Leakage around hardened stools is misleading. Also, 4 to 5 days between is long enough. MANY methods and meds are possible remedies. GO NOW and do something. Keep writing. LA Louise
Deborah,
Ditto the Sonata........no grogginess next morning...........
Sleep well!!!!!
Barb Pond
Kathy,
Did Dave have a blood test for ammonia level?? Seems like I read something somewhere that low blood pressure, ammonia level and liver are somehow related. Unfortunately, I can't remember where. Prior to me developing autonomic system dysfunction's, I too smelled ammonia.
Its probably unrelated but its interesting.
later and hugs,
cindy
Dawn, I am 46, will be 47 in three weeks. i was 42 when I had my galbladder
removed. About six months before have galbladder surgery, I was told that I wa
pre-menopausal and they put me on birth control pills to regulate my hormones.
I couldn't tolerate the mood swings with the pills so quit taking them about 4
months after they prescribed them for me. The more I think about things and
read what peolpe say here the more I realize that I started symptoms years
ago. But I just ignored them or accepted the explaination I would get from
doctors and not ask questions i was also told that all my problems wer ein my
head about 10 months ago. Go figure/
Thisa line of thought is very interesting
meg
"Dawn E. Morley" <dawnmorley@...
Meg,
I am curious. How old are you now? How old were you when you had your
gallbladder removed? My sister is only 43.
This could be an interesting parrallel. Also, did you ever take hormone
replacement? My sister's real MSA symptoms started Jan. 1998 within weeks
of receiving a hormonal subcutaneous implant of a non-FDA approved
medication for menopause.
Dawn Morley - Celeste O'Neill's sister - freezing in Indiana. Been the
coldest and snowiest winter in years -- maybe ever.
My furnace runs constantly....I am afraid to get the heating bill.
Meg,
I am curious. How old are you now? How old were you when you had your
gallbladder removed? My sister is only 43.
This could be an interesting parrallel. Also, did you ever take hormone
replacement? My sister's real MSA symptoms started Jan. 1998 within weeks
of receiving a hormonal subcutaneous implant of a non-FDA approved
medication for menopause.
Dawn Morley - Celeste O'Neill's sister - freezing in Indiana. Been the
coldest and snowiest winter in years -- maybe ever.
My furnace runs constantly....I am afraid to get the heating bill.
Tennessee is pretty cold as well. We have about 19 degrees here in the
sunny south.
Michelle,
But we all know that Fordy is one of those upside down and backward Aussies
anyway. Look at Anne, she still walks. With no BP no less!
Owyergoinmates? Are you giving that bloke of yours, lots of hugs from us? Is
Jess doing any better? Give her a couple of hugs too. You having barbies on
the pergola? We are freezing our bum's off here. I don't think it's been above
freezing here more than 4 hours in the last week. We did miss the big snowstorm
that has New York shut down.
Take care, Bill and Charlotte
I try to go to bed within 45 minutes of taking the sonata. I usually
wake for the day, from either "loud" dreams or pain in my legs aound
4 - 5 AM. I have just been taking this for about 2 months and the
amount of sleep that I get has improved 100 fold. I do like the fact
that it wears off quickly with no after effect.
Deborah
Yes Dawn, I had my gallbladder taken out about four years ago. It was the
first time I ever had a gallbladder attack and by the time they took it out,
it was so badly infected. I also have suffered from very severe sinus
infections for about the past ten years now.
I started having bad dreams, or should I say violent dreams when I was a
teenager. Always trying to escape someone harmful. Then they quit when I was
an adult. About three years ago they started to return. I would wake suddenly
from my sleep. Most of the time, I would wake covered in sweat and shaking
violently. I went to a phychologist and was told I was having flash backs from
a violent relationship I used to be in. The dreams have since gone. I do dream
very vividly now and then, but nothing violent. I was dx a month and a half
ago with SDS. I started taking requip two weeks ago and have had no such
dreams since I started the meds.
Maybe there is a link here. I would be happy to be part of a survey. Meg
freezing in SE Nebraska
Bill & all,
Your idea about the free radicals is interesting. My sister had a gallbladder
removed a few years back that had to have been "rotting" in her bodies for
years. Ironically, she never had a gallbladder attach until the thing was
basically scarred to the point it was adhered to all her other internal
organs. Surgeon said it was the second worst gallbladder he ever removed.
Took hours to do laproscopically and he nearly gave up and sent her to a
surgeon to open her entire abdomin (the old fashioned way to remove a
gallbladder.) She had complained for years of feeling like she was running a
low grade fever. And general malaise. Could it be a long term low grade
infection (undiagnosed) or other similar events (ie. someone susceptible to
chronic sinus infections) which produce long term chronic exposure to free
radicals set the stage for MSA? Have others had bad gallbladders preceding or
following diagnosis? Or other identifiable chronic infectious type conditions
preceding diagnosis?
Similarly to another she also had fainting episodes as a child and also
nightmares which resulted in sleep walking. Seemed to outgrow these episodes
after puberty. I like the idea of a survery. May not be that hard because I
think Don Summers told me survery's have already been done. Could be we
obtain a copy of an old survey and expand on it. Just a thought.
Dawn Morley - Celeste O'Neill's sister
Bill & all,
Your idea about the free radicals is interesting. My sister had a gallbladder removed a few years back that had to have been "rotting" in her bodies for years. Ironically, she never had a gallbladder attach until the thing was basically scarred to the point it was adhered to all her other internal organs. Surgeon said it was the second worst gallbladder he ever removed. Took hours to do laproscopically and he nearly gave up and sent her to a surgeon to open her entire abdomin (the old fashioned way to remove a gallbladder.) She had complained for years of feeling like she was running a low grade fever. And general malaise. Could it be a long term low grade infection (undiagnosed) or other similar events (ie. someone susceptible to chronic sinus infections) which produce long term chronic exposure to free radicals set the stage for MSA? Have others had bad gallbladders preceding or following diagnosis? Or other identifiable chronic infectious type conditions
preceding diagnosis?
Similarly to another she also had fainting episodes as a child and also nightmares which resulted in sleep walking. Seemed to outgrow these episodes after puberty. I like the idea of a survery. May not be that hard because I think Don Summers told me survery's have already been done. Could be we obtain a copy of an old survey and expand on it. Just a thought.
Dawn Morley - Celeste O'Neill's sister
Laurie,
Does your mother take pills very well. My sister started on the over the counter stool softener called Colace and it did a miracle on her constipation. If she is that constipated you need to do something to get that going. There are prescription meds too, but start with the Colace for a couple days and see if that does the trip. Just requires a short trip to the drugstore.
Good Luck,
Dawn Morley - Celeste O'Neill's sister
Hi everyone,
I noticed that a couple mentioned odors in association with this disease. For a very long time, Dave complained of smelling amonia. He was so sure that he smelled it on himself that he would have me smell his shirt. I never did smell any odor much less amonia but he was positive it was there.
Just thought I would mention that. There seems to be a lot of things we couldn't explain a few years ago, connected to MSA.
Happy New Year Everyone
Dave and Kathy
Kathy,
I have read in writings that occassionally (almost rarely) patients with SDS require a pacemaker. Although that may sound scarey I personallly know a few people who have had to have pacemakers. The procedure is fairly routine and the difference in these people after the pacemaker was ASTOUNDING. Almost made new people out of them. I don't know if that is true for SDS people but I sure wouldn't waste any time talking to a cardiologist about it.
Good Luck,
Dawn Morley - Celeste O'Neill's sister
Hi
Just a quick one as I am on my way out. Great idea to have a poll. But, thinking, thinking........ With the 'appearance' that many or even all have had this for 'perhaps' many more years than thought. Is it possible that it could be there for many, many years. Possibly triggered by something and laying dormant over those years. I was wondering if even a childhood illness EG measles could perhaps lay a seed, in some people?!
I feel that this many extra years more than suspected could include such things. Myself, I had occasional blackouts as a child!!!! Unexplained of course!!
Take something like being tested positive for HIV. many will go a lot of years before it graduates to AIDS. During the period of HIV many have no symptoms.
Goodness I have rather over used the word many but.....
Still thinking, but can see perhaps a whole new picture possibly emerging.
The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller
Anne and Pam especially,
Yes, I'm glad it came up and I asked about it. It seems to be about 5-7 to 1 that more people have the dreams and violent action than those who only get it after the meds. That alone may be a difference between the specific type of MSA.
have had MSA far more years than realised. The violent dreaming does appear
to be associated there appears to be no doubt. With so many reporting
having them years before being diagnosed or displaying other symptoms,
that's what I am thinking. Possibly the beginning of the nuerons
misfiring?! But, not enough to cause other displayed symptoms?!
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
We would like to remind you of this upcoming event.
Oregon Support Group Meeting
Date: Sunday, January 14, 2001
Time: All Day
Date: Sunday, January 14, 2001
Time: 2 PM
Location: Oregon Health Science University Library,
Portland, OR
Contact: Charmayne Bischel
charmayne@...
or Judy Mears mears@...
for more information
Hi all;
Wow!!! It's a real heat wave here in Minnesota today. It got up to 2
degrees above zero!!!!! Hubby just built a closet in the garage to
put his hunting clothes in. I was helping him in the garage with the
big door open wearing two sweatshirts. I guess I'm now use to the
cold, but I didn't say I like it..
I thought I'd share a thought with you all. Mom, Mable Neubauer, does
not wear cotton or flannel pj's anymore. (Years ago that's all she
would wear, at night, that is) The reason being is, when wearing
cotton, moving around in bed is more difficult. Also wearing a night
gown makes it harder to move your legs. So I got her some satin tops
and bottoms. With the satin or silky night clothing she can move just
enough to get more comfortable. I also use a plastic garbage bag in
the front car seat, for her to slide in better. A satin piece of
cloth would work well too.
Ps...About the cold...A friend of mine said when he was in SC over
Christmas, the weather got so cold it froze their nuts.
(ya know, that's pecans, don't ya)
Regards;
Mary Ann -
I just remembered as I read your note,Louise, that Ralph had a strange smell too. But I cannot put a name to it. His breath was bad no matter how much he brushed his teeth. He even noticed his body odor himself and used a lot of spray deodorant. He was clean but still had an odor.
He also would smell strange smells from somewhere.
The snoring was awful. And he could only sleep on his right side. Said he could not breathe on his left side. He hated the hospital bed because he had a hard time getting out of it, so he slept in his lift chair most of the time at night. Also in the daytime because he would just get so weak he could not go anymore. But a nap seemed to invigorate for a while.
His sleeping habits were atrocious. Not much long time sleep, just short napping times. He stayed awake, I believe because he could not breathe. He drooled and that choked him. His nose would run in streams. Just overwhelmed him at times. Hooray for Kleenex!!
So many things are coming to mind as I read the notes from others.
He was a fighter. I do not know how he made it as long as he did. Strong will, I guess. He could have given up a long time ago.
Take care everyone and I am sending some sunshine to the folks in the north country.
Love Barb
[INLINE] Stay warm and well.
Bill. Didn't see the initial request but Jan's nightmarish dreams occurred years before symptoms-- in his early fifties-- 1976-78, long before the first hospitalization 1994, dx Parkinsons 96. Dreams were violent rapid breathing episodes of being chased and trying to escape. Stridor and snoring in previous years was halted with a brisk shove to a side position . If that failed, shut doors and the spare bedroom afforded me some sleep. He rattles now when on his back no matter how high his head is elevated. During the early dream period he smelled of dirty hair and exuded MUCH oil from skin and scalp despite daily shampoos and showers. A toxic odor required airing his room and constant laundering of bedclothes. LA Louise where power and heat, water and phones are not dependable.
Hi Everyone,
Has anyone with MSA had problems with an irregular heartbeat?
My husband, Lewis, developed an irregular heartbeat in November. The doctor put him on coumadin to avoid a stroke. He now has fluid in his legs & feet as well as his lungs. The doctor prescribed a duiretic for this problem.
Lewis has had MSA for about twelve years, however has been on medication for about six years.
Any comments or suggestions about this subject would be helpful.
Thank you,
Kathy in Zanesville, Ohio
I would certainly like to see this happen for future generations of people.
At least our travels through this illness would help others. I am not at
Vanderbilt, but would help with the work.
How do we reach other patients and caregivers who are not on this list?
Marilyn in TN
Hi Bill and Charlotte,
Yes we have added mega salt to her diet, nothing seems to help, some
days are better than others. She hardly eats anymore. It is like 3 to 4
weeks before she has a BM and then when she does, it is hardly anything. My
dad catheterizes her every few hours to keep her from getting bladder
infections. Does anyone else have these symptoms?
Laurie
TO: Happy to be........
I am curious about you taking Sonata at 8:30PM. My sleep doctor recently
prescribed it for me but according to his explanation it should be taken
immediately before retiring as it is a quick acting sleeping pill with a
short duration. It wears off relatively quickly therefore no heavy after
effects like the old barbiturates. I take it to get to sleep with the CPAP
and get in a couple of hours good sleep before other aches and pains wake me
up.
Barb Pond inVA
Laurie,
There is no answer anyone can give you to console you about your mother. All
on this list know exactly how you feel, though. The anger and frustration
is very hard to deal with and understand.
I feel we as humans are creatures of nature the same as all other animals and
plant life and we have our time span....we were born, will reach a certain
maturity, then go back to nature. The only difference is we as humans have a
conscience and soul. That makes it so heartbreaking to see what this
terrible disease does to ourselves and our loved ones. But we do have hope
for a better place when we leave this earth.
Put your energies into loving your mother and doing all you can to make her
comfortable. This group is here to lend you all the moral support it
posibily can, so please stay in touch.
Barb Pond in Va.
Bill,
I think you're on to something!! Perhaps we could work with some of
the medical folks to put together a questionnaire that we could pass
out to the group through the polling feature. It could address all
sorts of things like age at onset, exposure to chemicals and
radiation, diet, family history, etc. We would then need someone
with the appropriate background to help us interpret and correlate
the results. I think the hardest part would be is designing the
questions.
Anyone at Vanderbilt up for this??
Carol & Rob (where we're waiting for the big snowstorm and hoping it
misses us)
Bill:
Mom doesn't (now or ever) take any PD meds - only had some Parkinsonian
symptoms not a PD Dx. Up until OH Dx she was only taking Celexa for anxiety
and Arricept for Alzheimer's. Neurologist last week stopped the Arricept to
see if there was indeed Alzheimer's and added Flourinef for the OH. Her
function is greatly improved so BP must be stabilized and little cognitive
change w/o the Arricept (what there is seems to be resolving as she is
becoming familiar w/ the ECF routine.) Actually was back up and walking
yesterday after two weeks in wc and very unsteady.
Mary,
Remember that PD medicines can cause OH. So your mom may still only have the
original diagnoses. But we are still glad to have you here with us. It sounds
as if you have the same caregiving problems as all of us.
Take care, Bill and Charlotte
Anne and Pam especially,
Yes, I'm glad it came up and I asked about it. It seems to be about 5-7 to 1 that more people have the dreams and violent action than those who only get it after the meds. That alone may be a difference between the specific type of MSA.
I've been thinking :o) I know did you think you smelled something burning :o) We have a poll link on the egroups site. Someone was thinking about a survey, we need to follow through on it. Pam, if you know the mechanics of using the poll link, let me know. If there is a site to set it up, let me know that also. I may be able to enlist some help on setting it up.
With 428 members, while it may not be exactly representative of all MSA patients (we are only reaching patients with some internet link), it still must have some significance. After all, that is 1% of all estimated MSA patients in the USA. If nothing else, it can point the way for research projects. While you are thinking along this vein, however - think about people in the USA with no private health insurance who may have MSA. Just Charlotte's diagnoses cost us about $2000 plus a lot of travel time and money and that was only 10-15% of the cost before hospitalization. Other countries may be much more representative of the total MSA population.
Everyone listening - suggest questions that bother you the most. However, we already know there is no great glaring link to any chemical environmental polutant. Since there is some evidence of free radical involvement, maybe we should look at diet (fried food junkies) or :o) chocolate :o) How about diet drinks? (I think we did diet drinks also).
All you lurkers and listeners, we will need your help also. We do not need your name, address or email address, but we would appreciate a general location, in case there is some sort of geographic environmental connection we have missed.
[INLINE]
Happy 2001, from Bill and Charlotte in Sunny Virginia where the snow evidently bypassed us to the east :o)
My husband has been having problems with dry skin. Do any of you have that
problem? Would like to know if the birch oil would be helpful or any other
remidies.
Thank you,
Jeanie
Anne
That would make sense in terms of my mother. Looking back 10 years or more,
(and my hindsight isn't always 20/20) it seems that she has been doing a
number of things for quite a while, but they seemed just exaggerations of
her usual self: difficulty swallowing pills, frequent urination,
constipation, small steps, list making due to memory loss, talking in her
sleep & vivid negative dreams, difficulty finding words and increased lack
of confidence and heightened anxiety w/ daily tasks. Since she was afraid
she was getting Alzheimer's, she was very defensive and hiding symptoms. So
this phase went on a long while before Dad and I even were aware that she
was sick. When I finally got her to a doctor for evaluation, the gait and
fine tremor in one hand accompanied w/ memory impairment suggested Alz. w/
Parkonsonian symptoms. And we've been on that road until the OH black out
episodes revealed another possibility.
Seeing this prompts me to ask: Does anyone know of a Michigan Support Group?
ML
Hi Bill
What I am seeing here with the dreaming, just thinking aloud, is that many
have had MSA far more years than realised. The violent dreaming does appear
to be associated there appears to be no doubt. With so many reporting
having them years before being diagnosed or displaying other symptoms,
that's what I am thinking. Possibly the beginning of the nuerons
misfiring?! But, not enough to cause other displayed symptoms?!
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi Jane
First great that you are intending to write an informative book on SDS.
(Now usually named MSA) The more publicity and understanding of this disease
we can get the better.
MSA AS I understand it:
In normal brain cell function, the neurons (the glial cells?) creat the
messages for autonomic nerve function. Their messages are sent to the
muscles through nurotransmitters. Dopamine aids in transferring information
by keeping the (neurons? nurotransmitters?) sensitive.
Glial cells are cells in the nervous system that surround, support and
protect neurons.The myelin sheath for example is produced by one of a basic
set of building blocks within the nervous system. Glial cells outnumber
neurons by about ten to one. They serve several functions in the nervous
system. . They form the myelin sheath around axons and perform what one
would call house keeping chores, such as cleaning up cellu;ar debris.
They als form a blood barrier preventing certain substances in the blood
stream from reaching the brain. EG If the sheath is damaged it can cause
jerky unco-ordinated movement in an affected person. Both the sheath and
the gaps play an important role in transmiting information. Many neurons
are covered by a sheath. There are 2 types of stimulation - 1) A graded
potential - a basic type of signal between neurons.
2) Action potential - Different to graded potentials, action potential is an
all or nothing response. Either it works full strength or it doesn't work
at all. The speed of conduction of an action potential is very rapid in
nuerons pocessing a myelyn sheath.
The symptoms of Parkinsons are a result of progressive degeneration of
dopamine producing neurons in an area of the brain associated with motor
function. Too much dopamine can also have negative effects. Dpoamine is
produced by nearons located in the region of the brain called the substantia
nigra.
Alpha-synuclein is a protein, (ASN) that normally occurs in our brains. In
MSA, ASN is hyperproduced and forms aggregates that attach themselves to
the neurons (glial cells). Now the message cannot be sent because the glial
cells (GC) lose sensitivity, and the GCs cannot "speak to" the NTs. Or are
they just "speech impaired," and the message dies on the vine, or are the
messages intermittently sent?
In SDS the messages mostly are sent intermittently. There is said to be
gradual loss of sensitivity. Hence the progression of the disease. EG loss
of bladder control.
The GCs eventually die.
Will look at your questions tomorrow, rather tired now not having been home
long.
Love Anne
Yes, I will be happy to put that info together for you.
Marilyn
We would like to remind you of this upcoming event.
Central Indiana Support Group Meeting
Date: Saturday, January 13, 2001
Time: All Day
Date: Saturday, January 13, 2001
Time: 1 PM
Location: Unitarian
Universalist Church of Indianapolis
615 West 43rd Street
Indianapolis, IN
For more information
Contact: Gary Huddleston
garyjoyc@...
Or
Please leave a voice-mail message at (317)327-4970
I'm not the one to answer these questions. I am more the people person
rather than the scientist. Seems as though you might want to interview some
of the doctors who are studying the disease as well as use answers from this
group.
I do admire your courage to attack the apparent lack of knowledge of how and
why this disease works. I would be happy to help with other questions (that
might be in areas of which I have knowledge) or editing when you get to that
point, if that would be of help.
I believe that the only way that we will concur this illness is for many
many people to be aware.
Thank you for your efforts and good luck!!!
Marilyn in TN
Marilyn,
Hi! Thanks for your speedy response (maybe you are the Speedy one now!).
Since you are more of a "People person"...would you be willing to tell me
what symptoms you and Charles first noticed? The first clues that something
might have been off? Was Charles scared, or denying, or how did the
realization creep in that made you decide to find out what was going on?
Thanks ever so much!
Jane
Keep smiling
http://www.call1800.com/smile/
Hi Everyone,
My name is Jane. I wrote to the group already once or twice, a few weeks
ago. I was hired as a caregiver for a man with SDS, three years ago. The
experience had a profound effect on me, and I want to write a book about the
experience, about him, and SDS. I have set aside the next two months to
write, and will see how it goes.
I have been listening to you all for about 6 weeks now, and feel I almost
know some of you. It is a privilege. I have some questions, and surely
more will follow. I hope you wonıt mind my asking. Ask me anything you like
about my background, the tone of the intended book, etcanything. I have
several goals for this book, but one huge one is to bring attention to MSA,
specifically SDS. I figure attention canıt help but bring money to
research.
Anyway, right now, Iım wrestling with exactly what MSA is, how it is caused,
etc. Following, I will write how it all works as I understand it. Iım
hoping you all can set me straight on the errant parts. Also, I have about
10 questions, and I hope someone (like Bill & Charlotte, the treasure trove
of valuable information!) can help me out.
Thanks a million in advance for any help you can give me. If you feel I am
being intrusive, please tell me, and Iıll buzz off. I just want to
understand as much as I possibly can about this awful disease, and see what
I can create.
MSA AS I understand it:
In normal brain cell function, the neurons (the glial cells?) creat the
messages for autonomic nerve function. Their messages are sent to the
muscles through nurotransmitters. Dopamine aids in transferring information
by keeping the (neurons? nurotransmitters?) sensitive.
Alpha-synuclein is a protein, (ASN) that normally occurs in our brains. In
MSA, ASN is hyperproduced and forms aggregates that attach themselves to
the neurons (glial cells). Now the message cannot be sent because the glial
cells (GC) lose sensitivity, and the GCs cannot "speak to" the NTs. Or are
they just "speech impaired," and the message dies on the vine, or are the
messages intermittently sent?
The GCs eventually die.
Sinemet is levodopa plus a catalyst. Levodopa becomes Dopamine in the
brain. It has the ability to go through the blood stream to the brain,
whereas Dopamine cannot.
Dopamine goes to the nurotransmitters to help bring the message across to
the muscles. The less dopamine, the less efficiency.
Whew! Okay, now for the questions.
1.) How are the Alpha-synuclein (ASN) inclusions different from Lewy
Bodies?
2.) Could the Glial Cytoplasmic Inclusions be thought of as clumps, or
tumors?
3.) What malfunctions first: the neurons, or the nurotransmitters?
4.) Specifically, what regions of the brain are attacked in SDS? Are they
always the exact same regions or can there be variation?
5.) What symptoms indicate an Autoimmune Dysfunction?
6.) What exactly causes low BP upon rising? (cellular level)
7.) Where should ASN be in the first place?
8.) Is the intended function of ASN known?
9.) What does this mean? "Synucleins are highly conserved proteins in
vertebrates"? And this "especially abundant in neurons and typically
enriched at presynaptic terminals."?
I have more questions, of a different nature, but Iıll leave it for now. I
need to see if you all are willing to help me or if you think Iım a bother.
Lemme know, and I sure how we can work to gether, and make something
wonderful happen!
Sincerely,
Jane Baldwin
Laurie,
Did you already say she's on a blood pressure medicine like Florinef or
Proamitine (sp?)? Even if she is, it sounds like she needs something more
to help keep her bp up. Have you tried keeping her legs elevated while
she's eating? I'd just be worried about lying her back so soon after eating
since many MSAers have swallowing problems and/or reflux.
Just my two cents,
Rose
Yes, Christine,
You would think that we would learn, but when one is asleep themselves and
awakened, it is hard to make rational decisions at that point.
Best wishes to you and your mother.
Marilyn
And don't forget, its a sign of right sided Congestive Heart Failure (which
is a clinical diagnosis, so present testing would not show it)
later and hugs,
cindy
Ann
I always carry print outs when we go to Dr for Warren. I didn't have one
when I went unexpectedly to hospital but the Dr who saw me knew about Shy
Drager when I told her I was the main care giver for Warren.
They did not find anything that was causing my heavy pain after giving me
every kind of test even to MRI of my spinal cord. There they found
arthritis and bulging discs but nothing connected to the pain I was having.
Everything checked out fine and they finally sent me home with some pain and
sleeping pills saying that they thought I was exhausted and stressed which
caused the pain. It had gone away finally after 6 days in the hospital. Am
watching myself very carefully now not to get over tired.
Thanks for your caring,
Mary
Kaye my sister had P.S.N.Pit is also called Steele-Richardson-Olszewski
syndrome My husband has sds which they.
tell me the only differences is
the eyes in P.SN.P. and effects the organs in sds.more
I don,t like either one!!
Blanche
Kaye here. Morning, all.
Because PSP (Progressive Supra-Nuclear Palsy) was once suspected in John, I
belong to that email support group as well. The similarities between the
two, three if you include CBCG<?
Anyway, this email was forwarded to the PSP group, but I thought you might
find some hope in it as well, because I am convinced that a treatment for ANY
of these hideous diseases will ultimately lead to a treatment for ALL. I am
hoping and praying for more and better news each day. I also feel that if we
"pool" our resources <letter writing, etc
and there IS strength in numbers!
Hi Meg: You mentioned horrid pains in the chest that radiate up to the jaw. I
have a hiatus
hernia that gives me terrible chest pain that goes up into my jaws and ears. I
find that laying
on my left side and raising my left arm so the elbow is above the shoulder will
bring me some
relief. I also take zantac daily to help. Don't know if this is your problem,
but it may be an
idea. Happy New Year! Linda (Ont. Can.)
Dear Kathy,
I'm so sorry, my heart goes out to you. How is your husband doing? How
are you doing? You are a pillar of strength. I just can't stand to see my
mother suffering anymore, it's just not fair. I want peace for her, her mind
is all there, but her body isn't. My thoughts and prayers are with you Kathy.
Laurie
Barb. In Sunny Texas.
http://sendafriend.com/happynewyear/
I started with violent dreams, (reach out or swing at things) after
PD drugs, I am on Sinemet, Amatadine, Mirapex, Restoril, and
Florinef, and Darvocet as needed. I sleep on a tilt bed to manage
OH. My dreams didn't start until 6 months after I started the PD
drugs. My bigger problem is just sleeping, going to sleep and staying
asleep. I am averaging about 3-4 hours a night with constant
dreaming during that short amount of time. I do not nap during the
day. I am not sure if the muscular tension I feel constantly in my
neck and shoulder areas keep me awake or the constant burining I have
below my knees does. I have tried expressing my needs to my Neuro but
he hasn't taken much action on helping me at overcoming this loss of
sleep problems. Any suggestions? And what exactly causes the burning
legs, neck & shoulder? I am SDS, SND and OPCD. Oh I also have
modeling of my limbs anybody know if that means too much blood or too
little blood that makes me all spotted?
Celeste 43 in Indianapolis area
My mother has had violent dreams for the past four years (that we know
of). For the past two years she has lived with my husband and me and we
have witnessed some really weird things.
Mother talks alot in her sleep. Up until the past six months when she
talked in her sleep she talked NORMAL - unlike her "daytime" slurred
speech with multiple pitches and uncontrollable volume. Mark and I would
lay in bed and be totally amazed to hear Mother talk like her old self.
Also, we have been awakened many, many times to screams of sheer terror -
Mother always sounds as though she is screaming for her life.
Mother has also jumped out of bed several times landing clear across the
room. Usually she is dreaming that something is falling on her and she
is jumping out of the way. For a woman who can no longer walk I find it
amazing that she can jump so far. Her last jump on Dec. 9th gave her
multiple pelvic fractures as well as fractures to the sacral.
You think we would learn after a while, but we still bolt out of bed
everytime we hear a scream, thump or all of the items on the bedside
table hitting the floor.
Christine
We would like to remind you of this upcoming event.
Western Tennessee Support Group
Date: Friday, January 12, 2001
Time: All Day
Date: Friday, January 12, 2001
Time: To be announced
Location: University of Tennessee,
Memphis, TN
Contact: Amy Beckman subiaco@...
901-452-7443 for more information
Thanks Bill, but I don't even watch movies anymore except Disney. No TV for
me either if I can help it. I used to be a
TV-holic but not anymore, I think my eyes have a problem -- along with my
morals and what we get to choose from today. But I do have to say, these
dreams are really scary, especially when you've never been a violent person.
They are just so dang real at the time they're happening. I haven't heard
from but a few on what their nightmares were about so I don't know if mine
are really whacked out compared to theirs.
Lisa, from Sunny & Cool California
Jerrie,
No answer to this one from me, but wondering the same thing. I have started
to swell and have frozen spots on my feet and toes and hands. Somebody told
me that they thought swelling would happen with heat, but I'm ice cold.
Don't know what to do about it. Dr. has talked about changing from Florinef
to Proamatine, but will have to wait for appt. I have a tendency to write
too long of notes, so I'm pretty sure my comments and questions on this must
have gotten buried.
Love, prayers & e-hugs,
Lisa Bushnell
I have read in literature of autonomic failure that slight anemia is typical. Don't know why. Probably the circulation trouble. Celeste is slightly anemic.
FYI,
Dawn
Interesting or not, my sister Celeste, dx MSA in Feb. 2000 had sleeping problems as a child. She is now 43. As a child she would sleep walk. etc.
FYI
Dawn
my husband's ankle & foot have been swollen for a while..does anyone
know what causes it & what to do about it? it's the same foot that is
freezing. thanks for responding. regards, jerrie
We had serious stoppage of feeding tube and I found health store papaya digestive pills papain content would dissolve fibers in Jevity plus formula. VA doctors suggested peroxide--nursing handbook meat tenderizer--didn't work. A 60 cc/ml Terumo catheter tip syringe is handy for slow drainage. An electric razor brush to clean port openings is also handy. I use three ports daily. Worst scenario is "core plugged" removal of solids necessary when pump is stopped for too long periods. My son made a stainless probe and cut plastic trimmer line as withdrawal tools. Just be gentle. If hospital fails to care for stoma or do daily turns, med aides PUSH stoppage and unnecessary stoma problems requiring Arzol poison cauterizer result. Our feeding tube has been in about a year and a half. LA Louise
Hi Laurie,
I am so sorry to hear about your mother. I know how you feel. I lost my dad in March of this year. He had colon cancer. Two weeks before he died, my husband was diagnosed with SDS. I was so hurt and also angry because my dad and Dave has been the only two people I have ever been able to depend on. I don't know of any two better men anywhere. I found myself asking ... How could this happen to them when there are so many mean horrible people in the world. I have over come the anger stage. I still don't understand. I have peace of mind because I did everything for my dad during his illness I could and I'm taking care of my husband the very best I can. I know God will look after us and that I have to put it in his hands. I hope you find some peace and I will pray for you.
You will be in my thoughts, Kathy
My husband Al had terrible dreams and thrashed in the bed and beat the
h--- out of me, that was when he was on no medication. We did not know
until a few years later that he had SDS and when he was put on medication
for PD and OH, the wild night stopped??
Ann from Soddy, TN
Carol
Elmer also takes klonopin and it is the only thing that allows him to
sleep at all at night. His dreams have been difficult for many years
and it was only this last year that he started on klonopin.
Elmer is a classic case of Shy-Drager. The OH was the major problem for
several years. The other factors have filtered in slowly.
Sally
Hi all, this is Meg here from Nebraska. I was wondering what is everyone
talking about when they talk about chest pains? About three maybe four years
ago I started experiencing them. My mother had major heart problems so I had
them checked out. I have had an angiogram, Ekgs and ultra sound on my
heart(can't think of the name for it right now) All these tests have come back
positive. I get horrid pains in my chest that radiate up to my right jaw. At
first I thought it was angina but the tests show no blockage or angina. My
heart is very healthy. I still continue getting these pains though. The tests
did show a valve problem in the lower chamber of my heart. The cardiologist
said that this problem is very common in women, especially athletic ones like
me. It wasn't a problem that required meds or surgery. I could live with this.
Also, what is a normal heart rate. My rate is around 80-85 sitting then around
90-95, and today around 101 standing. My OH is driving me crazy I am on
florinef and proamatine three times a day. And on requip three times a day I
take buffered salt tabs also. Drink plenty of water. My pressure always
regulates when i first go on different pressure meds, then in about a week or
so, it starts to drop when I stand again. Can anyone help me with answers.
Thanks
hi jane
Must be difficult being a nurse and trying to help ur husband. Sorry u
have to see it at home. I am on sinemet 25/250 - 5 a day for parkinsons
symptoms, and florineff and proamatine for orthostatic hypotension.
Florineff- I have been off of since Monday because tomorrow autonomic
testing is being done. My urinating increased at first and has since
stabilized. I have found that the sinemet and the proamatine to be
Godsends to my improvement in walking in conjunction with many people's
help and knowledge.
When the OH was first diagnosed, Proamatine was not approved. Honestly,
we all thght. I would never walk again, ect. I don't like saying that
because I don't want to put false hope into people and have someone
frantically look for some miracle and being taken advantage of. I don't
know why some meds or some what ever works on some and not others. I
just thank God daily that this med worked. I feel like this med and my
docs and any docs that helped them - we will never be able to pay them
back. One thing I am so excited about is that I am going to see our son
graduate high school this June and go away to college.
As for the barium ....yuck! I hate the taste of that stuff. The only
positive thing I can think of when I have a swallowing eval is the
pudding:) This is part of my personality Jane- my somewhat dry sense of
humor. I learned that from my Dad.
My equipment includes some of the same as ur husband. It is OK. If the
device helps, then I use it.
because everything seemed to happened so fast. The process really didn't
happen overnight, I was in denial. In fact a friend of ours put a
sweatshirt with 'Queen of Da Nile' in-between the doors and drove off.
Exercise is done with supervision, chatting and corresponding on the
computer, doing some crafts, trying to get into a day program at a place
called Menorah Park 2 times a week to use the pool and exercise room
there, cardiac rehab 3 afternoons a week ( improved my endurance
dramatically) are some of the things I do. This christmas my husband
and son give me a Dremel - cordless and lightweight for some crafts and
they teased me that I can do my nail filing with this tool.
When the weather gets warmer out I am looking forward to walking a
couple walks with the Cleveland Hiking club. They have walks on
sidewalks and paved flat trails. By the end of the walk I walk a bit
different and sleep on the drive home. I sleep on the way there and
then back home in the car. Also, I nap 2-4 hours before we go out. If I
can't walk I will use my chair. We get a patch once u reach a few
hundred miles. I only have about 294 miles left to go before I get my
first patch:) Personally, I think they should count my daily walking at
rehab and therapy, but no sympathy there.
My life to me is a pure blessing. Hard for me to put into words. I read
alot of emails in the early AM or early evening and well .... all I can
say is we are very fortunate. Oh I don't like the neurological illness
at all, but with proamantine I feel like I was given another chance. I
wish that med worked for everyone. The meds not working for everyone is
one of the hardest thing for me about having the neurological illness.
The other is having child(ren) see their parents ill at a young age.
I have an enormous amount of hope in researchers finding new ways of
dealing with the symptoms of present neuro.diseases. I know researchers
are working their brains out on PD and related diseases. There are times
I think - 'would u guys hurry up here. we are waiting:) Then I stop
myself and think they are trying their darnest and stop spinning my
wheels about it. That time will come.
BTW... Jane what type of setting are u a nurse in?? How long have u
been a nurse?
There is a speech language pathologist named Rose on this list who can
help alot with swallowing problems. Did you check the egroup files for
thickening liquids?? Rose has great ideas on how to make liquids taste
and look more appealing:) I am a retired SLP , but I worked with
autistic and profound hard of hearing teens.
have to stop now.
sincerely,
nancy m.
My dad had violent dreams for a few years prior to any other symptoms of MSA
and long before he was given any meds. We look back now and recognize it to
be an early indication of MSA.
He still has realistic dreams but they are seldom violent.
Rin Wroblewski, daughter of Paul Isenogle
Hi all, Kaye here.
I don't recall John, now deceased, ever having violent dreams. Nor did he
ever mention anything. In fact, I would have to say that sleeping is
something he did very well, and very easily! He also never snored! Not even
lightly. I would be so jealous of that because in our house I am the one who
snored! The one thing I can say about John's sleeping habits, and not sure
whether this would count, is that at some point during the night his
extremities would jerk. Sometimes a leg would just thrust from being bent to
straight. Or his arms would jerk. It wasn't enough to really disturb either
of us. In fact, John was never even aware he did this. During the last two
months of his life he was in a hospital bed in our living room and I remember
hearing his legs or arms banging during the night. Bruises. John had plenty
of those. I am finding all of this very interesting, though, as it certainly
does seem to have a pattern....
Be well, all
Kaye
<John, age 48, 8years diagnosed, probably 5-7yrs of symptoms prior to that
my husband began acting out his dreams 6 months before the balance problems,
OH, etc began. His movement disorder Neuroligist said this is common with
Neurologicial disorders. My husband does not take any meds only salt tablets.
Lisa,
Stop watching Halloween :o)
Take care, Bill and Charlotte
Hi Becky:
I know your feelings about missing Mike....the first Christmas after
Julie was gone was '98 and we were all OK -- still kinda in shock I
guess. But, Christmas of '99 was much worse. We all really did miss her
terribly and I couldn't get her off my mind at all. Now that 2000 is
here, I was fine up until 12/25, then kinda fell apart, but not quite as
bad as last year. Guess it will take a long time. She as well as all
the other MSAers and caregivers will always be in our thoughts and
prayers, and especially during the holiday season.
Julie also had violent dreams before being dx. with MSA. She was
actually first dx. with sleep apnea before MSA. I don't really remember
when they disappeared, it seems to me they susided substantially after
she began using the CPAP machine. I, too, had wished I had known more
about MSA so I could have helped her more. But, some of the meds she was
on were prescribed by the Dr. only after I had seen the info on this list
and took it to the Dr. So many times this list was such a lifesaver.
Happy Holidays to everyone. Hoping and praying for 2001 to bring some
relief for this awful disease.
Carole Barber
My bad dreams go off and on too. Don't know for sure if part of it's
stress. Lord knows we all seem to have our share. But what's weird for me
is that I am in no way a violent person and I have even had a dream where I
was gutting my 7 year old alive :-0 -- By the way I know I dream in color
because there was blood everywhere. It shakes me so bad for days. I had
never had any of this happen before I got sick. My version of a bad dream
used to be someone saying they hated me for some reason and now they are
just horrible, gorrey nightmares that seem to have come from out of nowhere.
Lisa Bushnell
Morning. I took Inderal LA 160 for approx. 10 years for what was then
thought of as essential tremors. Initially due to my age and some
symptoms back then MS was suspected.
Did chuck have orthostatic hypotension prior to the high blood pressure
med. I mean did he have any episodes of lightheadedness, passing out,
electrolyte imbalance?
nancy m.
Hi all, Bernice here in cold, snowy Ohio, caregiver and spouse of Ken for 13
years. Ken had violent dreams long before any sign of PSP or MSA. Seems to
me he had them all through our married life and we were married 44 years.
Often hit me and always woke up in a terror that someone was after him. Put
his hand through the wall once at a motel where we were staying. I used to
tell him it was because he grew up in a house of rough and tumble boys, and
one was always chasing the other. Strange isn't it, that so many of our
loved ones has this symptom.
Bill, you do indeed look like Santa, and you also look like my Ken did.
He had a white beard and hair for many years. A very handsome fellow.
Happy New Year to all
Bernice
JD Plas,
Hello to our friend from Holland. Hope you have a Happy New Year also.
[INLINE]
Hope to see my Holland flowers blooming soon :o) Is it as cold in Holland as it is here?
Take care, Bill and Charlotte
-Bill had violent dreams years before diagnosis.
Marie Fox
Anne,
We know better, Wot! Does Tony have another black eye? ("Sometimes lash out
apparently.) You're just like Charlotte, I'll bet - watches horror movies just
before bed, then has nightmares and blames it on the MSA :o) Or maybe you just
like to pick on poor Tony when he can't hit back :o)
We all know you are backwards (and not just with email). Upside down too :o)
Watch out for those kookaburras!!!!
I guess Charlotte is the only oddball that did not have the bad dreams and
thrashing before the meds. But then I knew she was an oddball when I married
her :o) Look who she married.
Take care, Bill and Charlotte
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Coo-ee Bill
Never have looked at it as the fancy part of town. Don't think it is but we
like it.
Wish I could take credit for the street name but it was all ready here when
we came. Perhaps they knew I was coming ! :o)
Yes horrible highrises along the beach front. Weren't here when we came.
Well, there was one. Luckily we live towards the top end of the map close
to the Spit which has lovely beaches with bush to the sand. The Spit is the
top bit on the map narrow land with the water both sides. The high rise area
is mostly where the tourists hang out. Not many locals go there often.
Have been busy sitting on the floor of the guest room painting today. I am
painting the low bits, like the ledge around the bottom of the wall.
Of course now Christmas is over we are a bit cooler again. Wouldn't you
know it!! Haven't even needed the air-conditioning on today!! Raining too
today which is good, well good for the garden. Going back up to Maria's
tomorrow for the day and night.
Hugs to both from Anne
Hi
I have spells of horrible nightmares. Sometimes lash out apparently. Trust
me to be different (going backwards with emails here) I didn't have them in
the beginning. Started about 5 years in. No meds to cause them. I will
have them for a week or so then some time off. I have wondered if they are
stress related. Mine seem to be worse when I am under stress. Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi Becky: Yes, you are right. Matter of fact our sharing of violent dreams
in Montreal with the doctors from around the world at the conference there
was the first time they had heard all had had them. This was in October of
1996. It was quite a discussion. I know Jack as a forester was falling
down canyons and yelling. I caught him several times just as he was diving
out of bed. It was a wild experience.
Hey, Becky it is nice hearing from you. Glad you still sometimes come on
and add your experience. Hugs, Judy
Bill:
Haven't seen a purple w/c come this way yet, but will keep my eyes
open for it. They put in to buy Freds w/c for us. The doctor got the
ok for it, so now we are waiting to hear from them. Also I have to
look for a new Van for us. My little Vista is a gross polluter with
the state on the smog. I just hate to give it up, but can't get the
engine for it anymore and my son doesn't have the time to rebuild it,
so have to do something, So will have to look around and see what I
can come up with.
Anyway will keep an eye open for something purple flying by.
take care
Vera
Sorry to read about your mama.
No body knows the answer to your question. Just respond to your mama and give her hugs and all the love you can give. She will always be your mama no matter what happens to her.
I am sorry to say, you have all she can give you right now. Do what you can so there will be no regrets when you have to tell her good bye. I had to tell my husband good bye in July of this year. It was not an easy task but I sure would not want him to still be suffering when he can be with the Lord and be completely healed, even tho I miss him terribly. He fought a good fight and won .The old devil could not keep him here in misery any longer.
God bless you and your dad for giving her your love and care.
Barb in Texas
[INLINE] A big hug for you