Becky
Hang in there. I know you are still suffering from the loss. Grieving
takes much longer than most people think. It's not just something you
get over, it's in learning to live a completely different life without
the one you love.
Thinking of you and all those who have lost someone near and dear.
Sally
Carol
I agree about the REM problems showing up first. Elmer started with
sleep problems at least 5 to 7 years before anything else was even
noticed. He too was pretty active during sleep as the normal chemical
that should have kept him quiet during the REM stages either was not
there or wasn't being used as it should. Guess we won't ever really
know for sure.
With the CAT scans and PET scans now they are able to detect some of
those things where it wasn't available 15-18 years ago.
Sally
Carol,
Most of the people here blame it on Sinemet and dopamine agonists. They are
also listed as side effects for those medicines. Charlotte did not have
problems until she started the Sinemet and deprenol. After she got used to
Sinemet, the dreams subsided quite a bit.
Lets do an informal survey - Who feels they had violent dreams before going on
PD drugs?
Charlotte does not take the klonopin. The doctor said it had side effects like
those of MSA. If you are on it, you should be aware of the side effects. It is
not recommended that you take it more than eight weeks also (unless your doctor
tells you to stay on it).
Take care, Bill and Charlotte
======================================
MaryAnn
I laughed until I cried reading this. Thanks, I needed that
It's cold in KS too but it's been here for while and I think I must be
getting used to it ........... it was -3 when I went to work this
morning and I didn't think it felt too bad. Of course everyone at work
thought I had lost my mind but that's nothing new =:
Sally
Kathy,
You have already given advice! Just being there and responding to
others is more than enough. We all have learned from our loved ones
and from each other. Sadly, some of us have more expertise than we
would like. I know that always get more out of this list than I
could ever hope to contribute.
Glad to hear that Dave was able to enjoy at least part of the day on
Christmas.
Rob & Carol (writing from VERY, VERY cold New England)
kids and grandkids here on Christmas Eve. Dave wasn't able to eat
lunch or feel like watching the babies open their presents. That
night we had our second gathering and he was able to eat and seem to
enjoy everyone being here.
would like to know which stage Dave is in. I know everyone is
different. I also noticed that MSA progresses faster with some more
than others. He has progressed pretty fast in the last year. I can
tell a difference in him, for the worst, since November. I realized
two weeks ago, that he has had Msa a lot longer than I thought. He
was having violent dreams, jumping off the bed, yelling, as far back
as ten years. I learned through the group, that it's a sympton. I
wish we has a doctor that would tell us what to expect.
Dave and me peace of mind knowing that there is someone that knows
how frustrated we feel and what we are going through. I will do
anything to help someone else in the same position. My problem is
that I don't feel I know enough about MSA to offer advice. But I can
offer support and will if I am ever needed.
Explorer at <a
href="http://explorer.msn.com"
Kathy,
There is no set progression through MSA. Charlotte has been through most of MSA, but I could not point to real "stages". If there are 5 stages, she went through the first four between 1988 or so and 1995 and has been in the final stage for over 5 years now.
Usually the violent dreams, etc ate associated with the medicines you take for PD or MSA, rather than the MSA itself. I have only heard of them without the meds a very few times.
What are his symptoms now? Is he able to walk? Is he incontinent? Does he have bowel control? Constipation? Dizziness when he stands? Rigidity? Balance problems? These are all possible symptoms of MSA, which he may or may not get. Some can be helped with medinines, others can not be helped at this time.
Pam put up another article today about research at John's Hopkins which shows promise for brain disorders in general. Physical therapy can help with movement. If he has trouble swallowing or speaking, speech therapy can help.
Take care, Bill and Charlotte
Nancy:
Can't answer yr specific question but Pro-Amatine (generic: midodrine) is a
vasoconstrictor. While Florinef is a slow, long-lasting drug that I
understand helps maintian a favorable mineral (salt) balance in yr blood,
Pro-Amatine is a quicker, shorter-acting drug that boosts yr BP by tightening
yr blood vessels. Florinef has a half-life of 18-36 hours; Pro-Amatine has a
half-life of 3-4 hours. Unlike Florinef, Pro-Amatine is not associated with
any adverse nervous system effects with long-term use. You should have been
told by your doctor not to take it too late in the day, not after 6 is what I
hear, because of the risk of supine hypertension.
I've been on both drugs more than 18 months. I've had pretty consistent a.m.
supine BP readings of 170/90 and spikes over 200/100 but my doctors don't
seem worried about it so long as my BP crashes when I get vertical.
Pro-Amatine is one of the MSA community's all-time favorites because the
manufacturer has been a loyal subsidizer of the MSA support group and our
annual meetings. There's good news and bad news here. Good news: the patent
is riunning out so the price will drop. Bad news: when the good news
arrives, the subsidies will probably stop.
If I can help, give me a ring.
John Moller... in the shadow.... oops, I mean around the corner from yr house.
P.S. When Bill Werre sees yr posting, he'll probably have an official
website for you to visit.
Hi Gang:
FYI...
Our local NPR (Nat'l Public Radio) affiliate here in Washington (WAMU 88.5
FM) is broadcasting a program tomorrow night (Thursday, December 28) that
might interest some of you (and may be broadcast where you live too).
The program is entitled "Gray Matters." It'll be two hours, from 8 p.m. to
10 p.m.
The first hour will be devoted to the subject of sleep and the brain.
The second hour will be on the subject of recent developments in brain
surgery, for Parkinsons among other diseases.
No references to MSA, of course, but it might be interesting nevertheless. I
won't be able to listen myself (I'm giving tango lessons to Republicans
prepping for the inaugural balls) so if any of you do and hear anything
interesting, please post a note about it.
John Moller... sleepless (some might say brainless) in the shadow of our
Nation's Capital
i've been off for a while...but need you again.
my new neurol today gave me a prescript. for pro amatine. don't have a
package insert yet.. is it a corticosteroid like fluorinef?
he said return in 6 wks. who will watch my bp? when is too high to
call someone?
nancy spires
Hi everyone, I hope you all had a good Christmas. We had all of our kids and grandkids here on Christmas Eve. Dave wasn't able to eat lunch or feel like watching the babies open their presents. That night we had our second gathering and he was able to eat and seem to enjoy everyone being here.
I saw where someone thinks that there is five stages to MSA. I would like to know which stage Dave is in. I know everyone is different. I also noticed that MSA progresses faster with some more than others. He has progressed pretty fast in the last year. I can tell a difference in him, for the worst, since November. I realized two weeks ago, that he has had Msa a lot longer than I thought. He was having violent dreams, jumping off the bed, yelling, as far back as ten years. I learned through the group, that it's a sympton. I wish we has a doctor that would tell us what to expect.
This group has helped us more than you will ever know. It gives Dave and me peace of mind knowing that there is someone that knows how frustrated we feel and what we are going through. I will do anything to help someone else in the same position. My problem is that I don't feel I know enough about MSA to offer advice. But I can offer support and will if I am ever needed.
Sorry, I didn't mean to be so long winded. We hope yall have a Happy New Year.
Love Dave and Kathy
Hi MaryAnn,
It's all called MSA... some people have all the symptoms and some only have
some of them. Some doctors don't understand that the real name is MSA and
they still use the old terminology.
Hugs,
Pam
Laurie,
I am the caregiver for my husband. I am 61 and my husband is 68. He was first diagnosed with PD and later MSA/SDS in 1998. I will be happy to share other info if you like, but my answer to your request for help is to encourage you to become involved. We have three adult sons who are willing to do anything (and have done much) that we ask. Our problem is that we hate to ask.
I would suggest to you. Don't leave it to your dad to tell you anything. He may want to but be unable to ask.
1. This is the most important gift that you can ever give your parents, but it takes time and committment. Don't just say, "I love you". Show them your love. You may have to make major changes is your lives today, but remember they made major changes in their lives when you needed them as an infant. That may be exactly what your mom has become, an infant.
2. No matter where you live or where they live, go to your mom and dad. Stay for a period of time. This trip leave your children at home. Neither you nor your parents need the distraction of children. Don't just drop in for an hour. Stay long enough to see what really is going on. Take things in your own hands, but remember they have a routine going. It will take time to change old habits. Some of those things that you disliked the most in your home when you were a child may be the very things that they want to hold on to now. Remember it is their home, it is their life.
3. Make it a point to go with your parents to the doctor. It always helps to have more than one set of ears. Doctor's offices can be very stressful. Even though my husband and I are both of sound mind, we sometimes hear two different things when we are at the doctor's. This happens for either one or both of us. If it is not possible for you to actually go with them, get written permission from your parents for the doctor to meet with you to discuss your mom's condition.
4. Make arrangements for you or your spouse to help your dad care for your mom on a regular basis.
If that is imposssible find someone to help on a regular basis, whether they think they want the help or not. Find someone to clean house, cook a few meals, sit while your dad runs errands, etc. Be sure it is going to happen week end and week out.
5. The most important thing your Dad needs is your support and love. He is already grieving for the loss his wife (as he has known her), the loss of his own life (as he knew it), and many other aspecs of their life together. Your dad may well be in a psycholgical schock without being able to recognize it. He may need some medical care himself.
My thoughts come from the fact that the members of this list are mostly caretakers and patients. In most cases, we are not medical professionals. We all care for each other, but we also see that the illness is different in each case.
My children have been wonderful, but they also have very busy lives. My husband and I are fairly lucky in that I am physically able to handle most of the care needs, but I see the day rapidly approaching when I will be unable to do all that is required for just daily living. I just see the need from so many of our friends and older friends who need so much help, especially daily moral support.
I will be happy to discuss other issues if you like. Please know that I care for you and your parents. My thoughts and prayers are with all of our families each day. If you live anywhere close, I would be happy to meet with you or your parents.
Marilyn in TN
To unsubscribe from this group, send an email to:
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Laurie, Welcome, though I am sorry that you are here. I assume from the SDS diagnosis, that blood pressure problems are part of your mother's symptom set. What are her other symptoms? During this two year period of deterioration, was she taking the PD drugs with any benefit? Was she able to do PT? Is she able to have someone do range of motion exercises now?
My mother Joyce just died about 2 months ago from an MSA disease. She was diagnosed almost 4 years ago with PD (as many were at first) and then because of her poor response to PD drugs, her rapid deterioration, and balance being an early symptom, was rediagnosed with an MSA disease. As far as we know, my mom did NOT have the BP problems.
At the end, my mom was able only to eat and swallow (thankfully), use her right hand in a limited way, and speak (thoug slurred). She was so rigid and her limbs were so=lp10twisted, walking had become impossible, as did everything else. She had no balance and had injured herself many times trying to walk, breaking many bones, which always set her back so much. She died from aspirating fluids (we believe from a dislodged nose tube) while in the hospital for being impacted. Although she was in terrible shape, her death was unexpected. She, too, had no mental deterioration (except some fogginess from the drugs sometimes).
The course this disease took with my mom was very fast. Others on the list have had SDS for over 20 years. My mother always had PT and tried lots of things to correct a severe head flex. Her body was just pulling her in. My father said that when he lifted her, he could feel the force pulling her down.
The most important things were in the last few months were home health care. Luckily, my mom always pushed herself to the limit, never giving up, so tried to exercise a lot -- but it was so difficult.
I hope your mother has seen a movement disorder specialist. I know that even though my mom saw many, it was often the family's efforts that made a difference in her treatment (we would ask about different drugs, for example, rather than the doctor trying them out).
Let us know more about your mom -- especially her symptoms and what she is taking. You are at the right place, Debbie
Debbie White
dwhite@...
Laurie,
Welcome to the list. It is unusal for a person to go down that fast and that far in that amount of time. Has she had broken bones or infections that may have helped her deteriorate thet fast? Have they tried physical therapy? Have they tried speech therapy for the swallowing problem and speech?
When they tried her on Sinemet - did they explain that she was not to eat right after taking the Sinemet and for 2 hours before taking the Sinemet? This ia a common problem. Levodopa (the useful part of Sinemet) can get into the brain from the blood and there, we want it to turn into dopamine to help with rigidity. However, levodopa starts turning into dopamine as soon as it gets in the body. Protein slows the levodopa from getting into the brain and more turns to dopamine outside the brain. Dopamine can not cross the blood/brain barrier and get into the brain. So if you eat much protein, you get less good from the medicine.
There is a lot of info on MSA (SDS) at these websites:
http://www.egroups.com/group/shydrager (click on Links)
http://freepages.health.rootsweb.com/~charmayn/links.html
http://www.wenet.net/%7Eccjm/shy-drager/
Take care, Bill and Charlotte Werre
Hi
My name is Laurie and my mother, 65, has SDS. She was first diagnosed
with Parkinson's 5 years ago. In the last two years her health had
deteriorated quite rapidly and she was not responding to any of the
Parkinson's medicines, they determined she had SDS. Within the last year she
cannot walk, talk, eat only soft, mushy foods, cannot use her hands, she is a
total "vegetable" except her mind is all there. My dad is in total denial
and I cannot get anything out of him from what the doctors say. I was
wondering if anyone can help me and tell me how long, what more to expect
etc. Please help me. Thank you.
Sincerely
Laurie Brazil
Laurieb9@...
Mary Anne,
That is called MSA and in later stages, almost everyone has symptoms of all
three. Charlotte has had symptoms of all three for more than 5 years. Her
major problem is balance (OPCA), but she has the rigidity (SND, and the OH
(SDS).
For aides info - Concentrate on
* low normal temperature (if she has that)
* Making sure that she drinks enough liquids
* If she takes levodopa watch the proteins for interference
* Exercise is important
Take care, Bill and Charlotte
Pam;
What would it be called if mother has all three of these conditions? She was
diagnosed with Shy-Drager with parkinsonian symptoms. She also has the
ataxia symptoms. I need to understand it well, so I can write up a booklet
for the aides to read. This was a suggestion from the director of nursing at
the VA Home.
Regards, Mary Ann -
Sally,
Our best wishes to you and to Elmer for a great 2001. I heard a saying
once, "Life is hard by the yard, by inch by inch, it is a cinch. It sounds
like both you and Elmer are doing a great job of the inch by inch.
My husband and i are in the same boat as you. We have no way to trace any
family info since my husband's father died in an accident at 56 yrs. His
own father died at 32 of an apparent heart attack in 1902.
We do hope that you life can be calm and stable.
Marilyn in TN
January 20th Agenda:
A urologist will speak about incontinence in neurologic diseases. The
speaker is David Mobley, MD who also has a website (www.drmobley.com) and is
a prominent radio urologist in Houston.
Date: Saturday, January 20, 2001
Time: 1 PM
Location: Memorial Hermann Southwest Hospital Professional Building II,
Learning Center B.
Houston, Texas
The hospital is located at 7737 Southwest Freeway at the Beechnut Exit
Contact: Karen Kennemer
2235 Cedar Falls Drive
Kingwood, TX 77339
USA
281-358-2282 (fax, too)
email: KMK1224@...
This group has members with
Multiple System Atrophy, Corticobasal Degeneration and Progressive
Supranuclear Palsy. Anyone with an interest in neurodegenerative disorders
is welcome to attend.
Mary from Detroit, Welcome
The first thing they should look at if she has deteriorated that fast is - does she have an infection of some sort. MSA (SDS) patients often run a normal temperature as low as 96 deg - so they may have a fever at 98.6. They should also check her for signs of dehydration.
You may find that the internist at the nursing home has experience with movement disorders. These doctors should be familiar with movement disorders also:
Dr. Susan Steigerwalt
Henry Ford Hospital
2799 West Grand Boulevard
CFP-5
Detroit, MI 48202
Dr. Robert Narins
Henry Ford Hospital
2799 West Grand Boulevard
CFP-5
Detroit, MI 48202
There is a form of Parkinson's with Altzheimers also and CBGD exhibits that type of symptom also, so it could be many things.
For now she needs to get as much as possible out of the rehab center. Hopefully she is getting daily occupational and physical therapy and they are concentrating on range of motion exercises. If she is having any problem with speech or swallowing, push them to get a speech therapist to do a speech and swallowing evaluation also.
Take care, Bill and Charlotte Werre
Anne,
So you are the Queen of Queensland :o) Looking forward to the pictures, tell
Pat to get them online for you. You sent me a map, how else would I know you
lived between the country club and the high school :o) Wot, getting a wee bit
forgetful :o)
I hope Lisa got the picture of her two dogs in our laps. We found out that
Mitch had used the camera to take some stupid pictures and it ran out of
memory. Now I know what that tiny red light is for :o).
We are having unusally cold weather. The snow we had a week ago is still around
where the sun does not hit it like the back of our house (north side).
Yesterday it did not make it up to freezing. We may get more snow on Fri. It
is not supposed to get above freezing until then.
Here is where we live (the airport is Dulles International Airport), you can
zoom in or out:
Kerri,
I have not noticed them myself. but have heard others on the list talking about
them. I do think they were in the colored part of the eye. Recently Anne
talked about them in her eyes also. I do know that MSA often affects the eyes
and often it is one eye more than the other. We go to an opthamologist rather
than an optometrist, since they are actually more familiar with medical
problems. Charlotte's one eye got much worse than the other eye.
Warning eyesight varying from one eye to the other can cause great problems with
driving. It often causes problems with gauging distance and peripheral sight.
I would concentrate on helping the symptoms more than exactly want you call
whatever you have. Are you doing your range of motion exercises every day?
Take care, Bill and Charlotte
Hi
Freezing!!!!! You must be kidding. We are being cooked alive here! :o)
Don't forget the 75 f is out on the spit. It was 37 deg C by 11.00am on
Christmas Day AND no air-conditioning!!! Never mind sweaters I could have
quite happily gone around in the nud, but wouldn't have wanted to put
everyone off their dinners!!!!! :o) Not a pretty sight!! :o) Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
My mother, Helen (85), has been tentatively diagnosed w/ Shy Drager's. Up to this point we thought she had some form of dementia (Alzheimer's type) w/ Parkonsonian symptoms. At Thanksgiving she fell and broke her wrist. Since then she has had increasing trouble walking or doing much of anything. Also she had a couple of episodes of blanking out (nonresponsive, fixed gaze, face drooping, drooling.) Visiting nurse noticed her standing blood pressure had gotten so low that it was not detectable. When she had a third episode (all occurred after getting to the bathroom and sitting down on the stool,) she was admitted to the hospital. At this point the neurologist diagnosed SDS. He has given us zip info (she is now on Florinef and he took away her Arricept) and said her internist could manage the BP. From reading your postings, it is apparent there are a number of things we could be treating or watching out for. She was transferred 12/22 to a nursing home for rehab and
I'm wondering what to have the doctor there checking on. Also how can I find a doctor in this area who is informed? Thanks, ML
So sorry your dad is in denial about your mother's illness. I'm sure
my mother-in-law would side with him. She has been telling us for the
last 4 years that it is the meds that's giving Fred his illness and
if I would just let her have him for a few weeks, and let her take
him off the meds , he would be just fine. Believe me Fred had this
illness a year before he was even on the meds, but I can't get her to
change her mind. Just do what you can to help your mother. Your dad
may always denial that she has the MSA, but don't let it get you
down. She needs the support now, not the denial. It's to bad he can't
see that.
Take care and hang in there.
Vera
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi Deborah
What a wonderful attitude. Good for you, it will take you a long way. Keep
it up.
Love from Anne
Are you sick of making the same resolutions year after year that you never
keep? Why not promise to do something you can actually accomplish? Here
are some resolutions that you can use as a starting point:
1. I want to gain weight. Put on at least 30 pounds.
2. Stop exercising. Waste of time.
3. Read less.
4. Watch more TV. I've been missing some good stuff.
5. Procrastinate more.
6. Drink. Drink some more.
7. Take up a new habit: smoking.
8. Spend at least $1000 a month on Ladies of the Night.
9. Spend more time at work.
10. Take a vacation to someplace important: like to see the largest ball
of twine.
11. Stop bringing lunch from home: I should eat out more.
12. Quit giving money & time to charity.
14. Start being superstitious.
15. Have my car lowered and invest in a really loud stereo system. Get the
windows tinted. Buy some fur for the dash.
16. Speak in a monotone voice and only use monosyllabic words.
17. Only wear jeans that are 2 sizes too small and use a chain or rope for
a belt. Only wear white T-shirts with those fashionable yellow stains
under the arms.
18. Personal goal: bring back disco.
Kerri,
Flecks in the eyes toward the outer part of the colored part of the eye (the
iris) can be caused by Wilsons Disease. Essentially someone with Wilsons
Disease has an excessive buildup of copper (?) in the body. It causes liver
and neurological problems. Just a thought to check.
Regards,
=jbf=
John B. Fisher
Mary
I so do feel the torment of stress you are saying between the lines.
Because at times feel like just balling buckets of tears. For me, I had to
get on Paxcel, an antidepressent, which helps, but doesn't change the
situation. Thank God for this site, where we can learn, share, and so much
caring is freely given, even to us new members.
Hang in there Mary.
Regards, Mary Ann -
Does your mama have trouble with her eyesight? Ralph did and mis-judged distance.
He also had trouble with co-ordination. He had a terrible time driving his manual wheel chair. the walls and all of the door facings were abused. But he could at least get where he wanted to go. For a while anyway. Then he got to the place where I was his power of movement but I was not a very good driver either. There is no right way for any of it.
Maybe the speed is wrong for her skill of movement. Or maybe the scooter is too big for her to handle.
Our home was not built for a scooter. No way to turn around. I had a friend here for Christmas and she had a scooter. We had to make some special arrangements to get her turned around inside our small home. I do not know how we would have managed if Ralph had been driving one. We used the ones in the stores when we went shopping but he could not see where he was going nor was he quick enough to manage the slight speed of the machine.
There were times when I wished we had one but I am not strong enough to have been able to load and unload it. God bless all of you who are able to make use of one.
Stay warm in the north. we are to freeze up tonight. Our daughter and her husband are snow bound in the Texas pan handle tonight. More snow on the way up there. They will try to get home tomorrow.Winter has finally come to the south. Fortunately it never stays for very long once the sun comes out.
Love to all. Barb, in a damp and nearly freezing Arlington, Texas 33' at 10:30 P.M.
[INLINE]
Hi all;
I'm enjoying reading about all this reckless driving stuff. A couple weeks
ago, I frightened a guy going into the VA Home. You see the sidewalks have a
gradual slant so the rain (in the summertime) will drain into the curved
drive way. Well to get mother in and out of my car safely I drive onto the
sidewalk so she doesn't have to step on the slanted cement. Well this guy
walking on the sidewalk jumped back and stepped into the foot deep snow with
and alarmed look on his face. I quickly got out of the car, before he could
scold me, I said real loud "Get off the sidewalk, Mary Ann's driving". Oh
course then I told him why. I guess my philosophy is some of them old farts
need a little alarming now and then. Mom just shakes her head, and says I
didn't get it from her side of the family.
Come to think of it, I might have a little of what they call road rage.
Because my little male dog was at the neighbors, sniffing their big ugly
female again. And when I turned onto the gravel road that goes past the
neighbors and to my place, there was my dog, right in the middle of the
road. I honked and reeved up the car all the way home. You should of seen
his feet move. No, I wouldn't have run him over, just scare the poop out of
him. Guess what, the next time he was let out, back to the neighbors he
went. I'm so glad he can't reach her, If you know what I mean.
Regards
Mary Ann
Yup it is cold in Minnesota.
Mary Ann
TODAY'S LAUGH: A SPECIAL POST-HOLIDAY LAMENT
'Twas the month after Christmas, and all through the house,
Nothing would fit me, not even a blouse.
The cookies I'd nibbled, the eggnog I'd tasted,
At the holiday parties had gone to my waist.
When I got on the scales there arose such a number!
When I walked to the store (less a walk than a lumber),
I'd remember the marvelous meals I'd prepared,
The gravies and sauces and beef nicely rared;
The wine and the rum balls; the bread and the cheese,
and the way I'd never said, "No thank you, please."
As I dressed myself in my husband's old shirt, and prepared once again to
do
battle with dirt,
I said to myself, as only I can, "You can't spend a winter disguised as a
man!"
So, away with the last of the sour cream dip.
Get rid of the fruit cake, every cracker and chip.
Every last bit of food that I like must be banished,
'til all the additional ounces have vanished.
I won't have a cookie--not even a lick.
I'll want only to chew on a long celery stick.
I won't have hot biscuits, or corn bread, or pie,
I'll munch on a carrot and quietly cry.
I'm hungry, I'm lonesome, and life is a bore,
But isn't that what January is for?
Unable to giggle, no longer a riot.
Happy New Year to all and to all a good diet!
Hi Bill & Charlotte
I read with interest about flecks in eyes of MSA patients.
You wrote:
Someone has mentioned before that the eyes of a MSA patient get some
sort of 'flecks' in them. That may be causing the 'reflection'.
What part of the eye is these flecks in? Is it in the coloured part
of the eye.
My optomerist has found these specks of deposits as he calls it in the
coloured part of my eyes.
Also my neurologist is still not ruling out MSA with my illness.
Still waiting on results of OCPA.
Kind regards
Kerri from Aussie Land.
Kathy,
In both the shoulder and the back many times muscle spasm causes significant pain. Discuss this with your doctor. Does he have full range of motion in his shoulders? If not, it could be muscle spasms or inflammation. Are the muscles in his back hard and his back stiff? if so it is muscle spasm. Those large back muscles can cause extreme pain including up into the shoulders from the trapezius muscle being in spasm.
God Bless,
Jim Stark
Thanks., Barbara. I am still looking on the Internet. Hope you and Ken are enjoying the holiday season. Debbie
Debbie White
dwhite@...
Hi Barb,
MSA is the overall or umbrella term. Under that fall the three types of MSA:
1. ShyDrager Syndrome (SDS) - low blood pressure symptoms
2. Olivopontocerebellar atrophy (OPCA) - ataxia symptoms
3. Striatonigral Degeneration (SND) - parkinson symptoms
Many people have the symptoms of all three types. This mailing list is meant for anyone with any type of MSA or any similar neurodegenerative disorder.
Regards,
Pam
Hi everyone,
Dave is begining to have a lot of shoulder and back pain. He has been taking Celebrex and also the doctor told him to take darvocet when needed. Neither meds help anymore. Is pain a symptom of msa? If so, do any of you know of a pain med that might help him. All I know about Msa is what I have read off the internet. He has symptoms of all three types. In any of you have more detailed info., please send it to me.
Thanks Kathy
Mary, you did it the hard way. Hospitals are not the place to catch up on your rest. But I am glad you were able to get some help. Give Warren a big hug for co-operating.
Take care and GET YOUR REST. You need to sleep when Warren is. Forget about all of the other tasks that are undone. They will not look so formidable when you get rested. [INLINE] Here is a hug from Texas
From one who knows the dangers of getting too tired.
Barb in Texas where it is wet but not freezing yet. That is to come later. Had a thunderstorm this morning. Springtime in December.
Hi all, I tried to send a message the other day and evidently it didn't go
through. If it shows up twice, I'm sorry, but do want to get back in touch
with everyone.
I spent 6 days in the hospital where they couldn't find anything wrong with
me but I was in severe pain in the left side of my rib cage around to front
ending in the middle. They thought it was Shingles but nothing ever showed
up so they sent me home with some meds to control pain. Right now it is
gone and I'm back to my duties of caring for Warren.
He did pretty well while I was gone and we had 24 hour care for him.
Luckily I had located an agency to provide some help, 4 hrs twice a week, so
I could get out and about. They also provide 24 hr care and when I called
them they went right to work and found some one to bwe with Warren when our
son couldn't. They were all great and Warren didn't have any trouble
accepting their help. When I got home he let himself relax and slept for
almost two days waking only to eat and take pills. He puts on a good show
when others are around and tries very hard not to be a problem.
It looks like the Dr's have found a mix of meds that help the b/p as its
being pretty steady. It still drops when he's up and about but not like it
was doing. His major complaint right now is his eyes. They are blurring so
that he can't read many things and doesn't recognize things that he sees.
I'm in process of finding a new opthamologist as his "old" one just couldn't
see any problems. Just before I went inot the hospital he was feeling
terrible and they finally found he wasn't eating enough so we really pushing
food, a little at a time and it has helped him feel stronger.
Well just wanted to fill you in on the happenings in the Strong household.
Hope you all had a nice Christmas and wish all a Happy New Year.
Mary
Hi all HAPPY HOLIDAYS:
After spending a week in hospital, and they didn't find anything wrong after
many tests, I'm back as Warren's caregiver.
They finally decided it was over stress and possibly Shingles that didn't
break out. Sure hope thats the last time this happens, it was so thoroughly
painful.
Warren was of course stressed with all of this and is now sleeping
everything off. He tried to put on a good act for the "help" but they could
see through him and kept him safe. We had to get 24hr care for most of the
week, and when the;y couldn't come our son and fiance would come and cover
the bases.
I'm fine now but will watch for the stressed out feeling, believe me.
Thanks for your caring.
Mary
Hi Bill
We are at the back of waterway between seaway and mountains. Mountain
at back is where Maria lives. Will write about Christmas tomorrow.
Love Anne
http://www.britannica.com/bcom/eb/article/single_image/0,5716,29992+asmbly%5Fid,\
00.html
Anne,
Coo-ee, you and Tony live in the fancy part of town, between the High School
and the Country Club. But You never told me they named the street in front of
the High School after you :o)
You must be home from Christmas at Maria's. Oops! you are home, I peeked
ahead. Wow, now I know why they call it the Gold Coast, look at all those high
rises along the beach, looks like Ocean City, MD.
We are all recuperating today from two days of Christmas. Eating leftovers :o)
and playing couch potato.
Hugs from Bill and Charlotte
http://map.yellowpages.com.au/cgi-bin/wp/map?lang=e&type=g&action=map&ADDRESS=Pl\
edger+A+R;:+:23:Myall:St::Southport:4215:QLD;1;%2807%29+5532+4150
Hey Anne I am just now going to bed
We have a big ice storm coming in soon so I plan to sleep in this morning.
Hope you had a great day with the kids.
May look you up later
Love to you, old friend.
Barb [INLINE]
Hang in there, You are not alone.
I am Barb In Arlington, Texas. In all of the years my husband, Ralph, was ill, I never ceased to be amazed at each day, There was always some new challenge for both of us. Don't be afraid to ask for help. You cannot know everything. Just when you think you are ahead, you get a new challenge. You are fortunate with your medical training. Most of us care givers had to start from scratch. Just learning how to take the BP correctly and keeping logs of med and symptoms. I kept a journal for our neurologist but now I seem to be unable to remember a lot of things that happened and I have to look it all up.
A weary mind and body will play some pretty wicked tricks on you senses.
Take care of yourself and get rest. You can make some serious mistakes if you don't.
May God bless you as you learn along the way.
Barb
Here is a hug for you and yours.
[INLINE]
Hi jane :)
Welcome!
What meds are ur husband on? When did u notice the initiation of
symptoms and what were they? Does he have a wheelchair? A bedside
commode? Is he in physical therapy? Sorry for so many questions, but I
worry if someone is falling that much. I myself don't want to go back
into my wheelchairs, but no way do I like falling. I found the less I
move the less I have a bowel movement. When that is a problem -
lactulose or warm water edema (sp?) bag does the trick. However, I have
to make sure I do not get dehydrated also.
Aspiration- How do u thicken the liquids? How does he keep his nutrition
levels up?
What did ur husband do for a living before he became ill?
nancy m.
To All in the Family,
May everyday be Christmas and may everyone experience a miracle in 2001.
God Bless,
Jim Stark
Jane,
Welcome to our list. Yes we have heard all of those symptoms before.
Sounds a lot like the OPCA brand of MSA. Speech therapy may help with the
swallowing problem. If not, thickening or even a PEG may help. My wife
Charlotte has the same problems and got a PEG during a bout with an infection in
1998. She has had no problem with infection since as she gets about 90% of her
liquids and meds via the tube. She still eats a soft mechanical diet by mouth
and I supplement it with liquid supplements at night. For constipation, we get
by with about a tablespoon of Colace a day.
The sleeping bothers me. Is this something that came on suddenly? Did you know
that MSA patients often run a "normal" temperature of as low as 96 deg and 98.6
could actually be a fever? Infection often causes sudden changes for the worse,
including sleeping and loss of energy. It can also cause a sudden drop in motor
skills. Make sure he is actually swallowing enough liquids as too little can
cause dehydration and a UTI.
Take care, Bill and Charlotte Werre (dx of PD in 1990 and MSA in 1995)
Michelle,
We have the line of scuffed walls all the way down the hall and on every doorway
and cabinet in the house. Corners on walls or doors are totally gone.
However, Tim Allen in the show wrecked a whole army base and in another show,
wreched the neighborhood with a hopped up riding lawnmower. :o)
Now Charlotte has not used her body to damage things for several years. Tell
Fordy I said he is to stop using his body and fight fair - only use the
wheelchair :o) I have to send you some spackle to fix the walls. Doors and
cabinets are expensive to replace, sorry! Tell Fordy I asked if he drives on
the right side of the hall or the correct side - maybe that will get him to the
keyboard :o) With Anne and your ornery old bloke not writing - who is going
to give me a gobful?
Unfortunately, that "slight" increase around the tummy is about 20 pounds.
Missing 4 months of softball because of the bonespur on my heel wrecked my
tummy. I haven't been able to get more than twice a week at best to play table
tennis either. This is not the time of year for losing weight! We had roast
beast here on Sunday and my daughter had a hugh brunch this morning. How are
all of you and the lopus dog doing? I thought we had a good picture of Lisa's
two Golden Retrievers when they jumped in Charlotte and my laps just as another
picture was taken, but it did not show up on my camera. Hope Lisa got it on her
film camera.
We have GOT to find a way to ship half our cold to you and you ship half your
hot air to us :o) I still can't find Wolumla or Bega weather however.
Take care and hugs to all, Bill and Charlotte
==========================================================
Hi,
My husband has been diagnosed with MSA 2 1/2 yrs ago.
I am an RN but it doesnt help much.
He has a catheter because he made trips to the bathroom about 10 times at
night & very very often in the day & some problem with control.
He has an extreme problem with balance and falls frequently.
He had a barium swallow test and found he aspirates on liquids and I have to
thicken them. He also has severe constipation. He also sleeps most of the
time
Do most people have all of these problems when they have MSA or is his an
extreme case?
I. Thank you
Jane jhrn123@...
Bill and Charlotte
I loved the picture.
One more for the collection!
Sally
Nan
Merry Christmas Grandma!!!!!!!!!!
I know you are staying busy with your job. I hope you'll be able to
make trips to California now. Still missing Jim and his wonderful words
of wisdom here in KS.
Sally
Merry Christmas to all my wonderful family from the Lesline Bunch =:
Remember .. even tho' I don't write much any more, I'm still here. I
try to read every day to keep tabs on all of you!
Welcome to all the new family, you will find much comfort here. Hugs to
all of you who have helped us through the last year. I couldn't have
done it without you!!
I'm glad to report that Elmer was again able to join us for Christmas
dinner and even managed to walk up the set of steps into my
sister-in-law's home to get there. Jim pulled in close, helped him out
and with 1 son on each side for mild support he walked up the steps. He
then announced the kids could put him in a box and slide him back down
when it was time to go. He was in top form and had jokes for us all.
He did admit that set of steps was a little tougher than he thought they
would be. The trip back down proved harder than the trip up but a son
on each side for support made it uneventful.
We continue to have good days and bad but for the most part Elmer
remains stable. His memory for most things is still very good and a
recent discussion with him about his 2 first cousins who both had
something similar to his SDS/MSA problems gave me a little more insight
into some family history. One was diagnosed before death with PSP and
the other with maybe MS or ALS, they weren't sure because she was sick
for only a short period of time. The 3 cousins are children of 3
sisters. I hope to pursue this a little more as winter wears on when I
have time.
I also have had a phone call from Elmer's previous Dr who is still my
family dr asking me to please keep him informed of Elmer's progress if I
would and to continue to send information on MSA to him as I collect it.
He also wanted to know if I had come across anything that might point to
a family link. He said he was very frustrated with seeing patients with
symptoms and wondering if he was missing something that was right in
front of him. As you may remember, he diagnosed Elmer within months of
first seeing him with Shy-Drager.
We are all holding our own at the time. It is cold, windy, and we have
had snow on the ground for about 2 weeks with more expected yet this
week. Count down is starting for the June 9, 2001 wedding to take place
in Topeka, KS with the bride and groom pinching every penny until it
squeals so Billy is really the only one who got Christmas presents this
year in preparation for the June blow-out of 500+ people. Think kind
thoughts when you think of June weddings as we will all be trying to
keep our sanity wondering why in the world we agreed to this.
Love, peace, and much happiness to all of you
Sally
Michelle
No wonder everyone in your family is banged up. If Fordy drives like
Tim, it's a wonder you even have walls left to hit.
I'd love to send some of this cold your way, just tell me how.
Hope you had a good Christmas
Sally
Sorry to butt in but your wrong, Fordy drives his wheelchair worse than Tim
Allen.........the damage to all the internal walls of our home is our proof,
what he doesn't do with the chair he does with his body...both cause just as
much damage.
Good colour choice (purple) that's what Fordy has with his push along W/C,
glows in the dark too :-) (just kidding)
Take care and have a great New Year celebration
Fordy's Michelle in Oz
Nan,
Congratulations on the new grandson. Even though I never met Jim, he so touched my life in his writing. He's definitely watching over you all.
Love, prayers & e-hugs,
Lisa Bushnell
Merry Christmas to everyone!!!!! I heard this poem at a funeral I
attended last week. I thought it was so sweet. I hope it will
comfort those of you who have lost loved ones.
I'M SPENDING CHRISTMAS WITH JESUS CHRIST THIS YEAR
I see the countless Christmas trees,
Around the world below
With tiny lights, like heaven's stars,
Reflecting on the snow.
The sight is so spectacular,
Please wipe away that tear.
For I'm spending Christmas
With Jesus Christ this year.
I hear the many Christmas songs
That people hold so dear.
But the sounds of music can't compare
With the Christmas choir up here.
For I have no words to tell you,
The joy their voices bring.
For it is beyond description
To hear an angel sing.
I can't tell you of the splendor,
Or the peace here in this place.
Can you just imagine Christmas
With our Savior, face to face?
I'll ask Him to light your spirit,
As I tell Him of your love.
So then pray one for another
As you lift your eyes above.
Please let your hearts be joyful,
And let your spirit sing.
For I'm spending Christmas in heaven,
And I'm walking with the King!
(Author unknown)
Trevada
I just wanted to wish all of you a Merry Christmas, and share a bit of mine with you. As I'm sure you know, this Christmas has been very difficult for me - I miss Jim so very much, and especially since our last Christmas together one year ago was so good. He has been watching over our family though, and was there in spirit when our son Randy (his step-son, but raised form age 4) was married just a month after Jim died. He was also watching over us today when our grandson Evan Geoffrey Bloom was born this morning at 9:15 in California.
I am smiling through my tears as I write this, and hope you all will have as blessed a Christmas as I have. I love you all!
Hugs to ya,
Nan
Dear Charlotte and Bill, Lovely picture and I'm so pleased to be back with
SDS group. Fred moves only his left hand now and has infections and pain
from pressure wounds but still hangs in there. Summer lightning took the
computer and more and winter ice has returned to plague us. You -all
appear to be warm and secure. Wonderful! Best wishes. LA Louise
Debby,
Is it ok i call u debby? It is easier to type.
anyway.... I love the joke. My name is nancy and I am 42 years old. I am
on sinemet 25/250, proamanitine, florineff, lamictal. I have found that
if I move ,then rest, then move and so on, then it is less painful.
Also, doing movement in the water results in no pain at all after about
3 weeks of one session a week.
nancy:)
Pam,
This is no fair! This morning you had 15 deg F and we were at 6 deg F. But I
do hear you are getting the snow that Barb sent from Texas.
We had a white Christmas on the North side of the house anyway. They say it's
22 F here but it does not feel like it with the 17 mph wind. It is sunny here.
Barb, hope you are not slipping and sliding on all that ice. Anne are you
freezing down there, I see it's 75 deg F, you must have a sweater on :o) Of
coarse it's only 8 AM there now.
Take care, Bill and Charlotte
Deborah,
This list is definitely where you want to be. Don't let it discourage you,
as there are many answers here too.
The support you will find on this list is amazing. EVERYONE cares and
EVERYONE is here to help you get through those bad times.
Total solutions are not to be found. But be aware, that if there is
anything new that comes along, this group will know and print it before your
dr. does.
Many doctors are not familiar with MSA and those that are, are aware of this
list.
If you have questions about meds, or anything else for that matter, this is
where to ask advice!
People here don't criticize, unless it is positive criticism.
You are on for a rollercoaster ride. Stick with the group! Be a silent
observer, or an active participant. We are glad to have you.
My mother was diagnosed with Parkenson's first, about 10 years ago. Then
they diagnosed as Shy-drager, now MSA.........basically they are all one and
the same. Symptoms vary greatly and change often. When you see something
here that pertains to you, save, print and run by your doctor.
May the new year bring answers to us all.
Karen
Great pic Bill.
Hope you are having a wonderful Christmas and that the New Year brings you
lots of love, patience, and cures for all of the MSAers on line!
Happy Holidays!
Karen
Merry Christmas all,
For those of you who wanted a recent picture of us, this was taken about an hour
ago at my daughter Lisa's house. Yesterday everyone came to our house and this
morning we went to Lisa's to watch Shane open his presents. Grandpop had to put
Shane's telescope together. Then Shane had to test it, so we looked at a maple
seed on a tree about a block away.
Ave a gudday mates! Hugs from Bill and Charlotte in COLD Herndon, VA
Hi,
My name is Deborah. I am 38 years old and have been diagnosed with
atypical Parkinson's. My doctors are still at a loss as to what
subtype I have. I am glad that I found this group. I need to find
others like me that will understand what I am going through. I was
diagnosed a year and a half ago and continue to rapidly progress. I
have days that I can't walk or talk and I am in constant pain. Does
anyone else experience chronic pain? I am on so much medication with
so little relief but I am still working and I try my best to find the
positive in everything.
I also try to keep a good sense of humor. One of my favorite
things to tell people when they make themselves uncomfortable by
asking questions is, "Darlin', you are absolutely right! Parkinson's
is totally wasted on me. Just think, if I were a guy, I wouldn't
need Viagra because I'm stiff all of the time". Tee Hee! I know,
but if this ever makes the late show, you will know where it came
from.
I am glad that I found all of you. Have a very Merry Christmas!
Deborah
Keep warm. Barb
http://www.justsaywow.com/surroundedby.htm
May the peace that passes all understanding be yours this Christmas! In the
midst of the hustle and bustle, remember the reason for the season. Take a
moment to reflect and refocus. Await, don't agonize. Participate, don't
party. Return love, don't require love. Reflect and refocus on the reason.
Shalom,
=jbf=
John B. Fisher
Season's Greetings
from
Charlotte and Bill
to
All of you
Have a joyous
Holiday Season
Thanks for your thoughtfulness in responding during this busy season.
I am struggling, and knowing you are here is making a lot of
difference for me.
Thanks again, and happy holidays.
Vera,
This is not about President elect Bush, it IS about banning research on "moral"
grounds. There are always choices made on what research NIH paths follow. It
was always a panel at NIH that decided this proceedure and where the money
went. The President always put people on the panel. They decided which
research was most promising and allocated the research money as best they
could. The votes were seldom unanimous. The year that they decided to put the
money into Parkinson's (fetal tissue transplant) research the vote was 18-3 for
the research. Part of the reason they chose fetal tissue transplant that year
was that researcher's in Altzheimer's and Juvenile Diabetes also though it could
help them.
However, Jerry Falwell and Pat Robertson went to Reagan and asked him to ban the
research. For the first time in the history of NIH, the President over ruled
his own research panel and banned the research by an Executive order. Since it
takes a 2/3rd's majority of Congress to over rule that, it stood. Sorry, but
this is a classic case of interferrence of church in state matters. If the
church wanted it banned, it should have gone through Congress as a bill and made
law. England seems now to have better separation of church and state than we
do, as their leader told Parliament to vote on it.
When Clinton was elected, he decided that was a church-state issue and removed
the ban.
There are many Christians as well as other religions, who feel that war and
executions are morally wrong. Yet we here in the USA still execute criminals
and fight wars "for the good of society as a whole". I agree with that stance,
after all Christ himself indicated there should be separation of church and
state. I also know that many, many people died from blood transfusions before
we got to the state of the art we are at today. When blood transfusion started,
it killed as many people as it cured, including some of the donors.
When they did fetal tissue transplant here, they set up very specific guidelines
for how they were able to get the tissue, how it was to be handled and that no
compensation was to be given for the consent to use the tissue. In addition,
they could not ask for the tissue until after an abortion decision had already
been made.
Stem cells are not yet ordained to become specific human cells and come from a
mass of cells that do not know what they want to become. Since they would be
destroyed if they were not used to heal someone, and they will live on in
another body, I feel it is Pro-Life to use the cells. I am not alone in this,
as many clergy also feel this, including a friend who was strong into the
anti-abortion movement. Remember, I am not for abortion as a means of birth
control, myself. I do believe that a society which bans abortion, should take
care of the children. Charlotte were foster parents to three children and
adopted one, so we do know what happens to children whose parents do not take
care of them.
Take care, Bill and Charlotte
Vera,
If something does not sound right even when a doctor says something, remember
Einstein always said "question everything". I don't know at least a third of
what the doctor says, but can often get the meaning from the context of the
thought. However, when something does not sound right I question it. The
balloon does not sound right, or as the robot on "Lost in Space" used to say "it
does not compute!"
I'll send a picture of it when we get it, but parts are made by three different
manufacturers, so we will not get it until after Jan 1. The guy who is
assembling it and measured for it said it was one of the most custom chairs he
has ever done. :o) We had an engineer, two physical therapists and a patient
in on the design :o) We are getting pneumatic tires to cushion her ride too.
The PT's were excellent with showing how custom backs or whatever could help.
We will even have a fitted seat bak with side pads to help hold her up and a
harness to keep her straight. If she does her exercises in the chair, it will
help add strength to the right areas. A tray to eat from and a backpack to fit
on the back.
Now I need Tim Allen to motorize it :o) If you see a Purple wheelchair coming
at you Watch OUT!!! Charlotte drives her wheelchair worse than Tim Allen
drove the tank. :o)
Take care, Bill and Charlotte
Unfortunately, I don't have the url handy at this moment. I am getting
nagged to get a bath loll. Anyway I remember seeing one that even does
medicare claims online. I will try to look in my bookmarks for it after
Christmas.
nancy m.
Bill:
You told us what both Fred and I were wondering, but I wanted to see
if anyone else had heard of the balloon. I know I never had, but
would try anything if it worked.
Glad I asked before I tried it. Need to do something, but wasn't sure
this would be it, for all the reason you said.
Thank for the help
Vera
PS . I bet Charlotte w/c is really pretty, I just love purple.Good
color
Hi Bill:
I was sure it was you that talked about the funding for the
Alzheimer's that Reagan pulled and put to the Aids research, but
didn't want to say it was you, just incase I was wrong. I'm not
saying that it was wrong to put some of the funding to aids, as we do
need to fine something for that also, but the funding should be to
other illness also. Why should one get more then another? That's what
I don't understand.
Always
Vera
I am touched as I read your news and comments. Sometimes, I feel so tired
and lonely. Your comments made me realize that life does go on even after
this illness is over.
Marilyn in TN
I was very sorry to hear of the death of your Herman. God is merciful as He takes the loved ones gently even tho the time leading up to it is awful.
We are blessed even in the times of sorrow. It hurts terribly but so did the misery and frustration of this awful illness.
May God bless you and lead you in the path you need to follow and give you strength and courage for each day.
Much love from Texas.
I have been through what you are doing now. You can make it. Just hang on to your family and friends. They are hurting too. Take some time for yourself and get the rest you need. It has been a long hard fight. But now Herman and all the rest, including my Ralph, have come out as winners.
Good night, friend. Barbara, wife of Ralph, who was freed at last on July 27, 2000 after five years of fighting.
[INLINE]
Haven't had much time to read or reply lately but wanted to make sure
that I told everyone how much we appreciate your friendship. John is
doing pretty well for the stage that he is currently in. We continue
to work very hard at swallowing. He has not had a UTI for a couple
of months now. We thank the Lord, that even though he
is "BEDRIDDEN" we were able to travel to Tulsa and spend a very nice
day Thursday at our oldest son's house with our immediate family plus
a potential new daughter in law! The two darling granddaughters made
Christmas very special for Grandpa even though he can't tell them so
verbally. We have much to be thankful for. I pray that you all will
have a wonderful Christmas....and God bless!
Better yet, use a pin point projector ... As Bill says, don't look at the
sun directly!
=jbf=
Bill, I am wondering if you bought some of those things on line, if you
would have to pay tax. I used to buy quite a few things, i.e. incontinent
supplies, gloves, etc. from
www.webofcare.com They have some pretty reasonable prices also.
Bernice cg of husband Ken for 13 years. deceased 6/23/00 (6 months ago
today)
Also, can anyone explain to me why when I try to use "reply" my message
comes through with only a yp
to use reply on here.
Bernice
Hi Pam
Yes I do have it . Wasn't sure about the next bit, but hopefully I will be
there.
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi all,
If you plan on watching the solar eclipse on Christmas day, be sure to go out
and buy a welding glass (No. 14) to watch it through. Do not look at the sun
directly!
Much of the USA and Canada will be able to see it. Boston will see 57% of the
sun obscured by the moon. For more details see:
http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=55&id=106772
Take care, Bill and Charlotte
I plan to be there! Run your IM software and then go to
http://home.inforamp.net/~pbower/msachat.htm to join us.
You can get the IM software at http://www.aol.com/aim
Hugs,
Pam
Can anyone recommend a good Web site for aides for the disabled? I want to price the various "grabbers" that are available. Thanks, Debbie
Debbie White
dwhite@...
Bill,
I am a VA resident and may be having a "senior moment", but what is the MSA
tax you mentioned?
Barb Pond (Blacksburg)
Hello everyone,
I would also like to wish everyone a safe and Happy Holiday. Thank
you also for being there when I needed a friend and a shoulder to
cry on. This year started off every lonely, but I can say that now I
can face each day knowning that I'm no longer alone in this battle to
fine some hope for my love one and that has made a world of
different. You really are God's Blessing to me.
Many Hugs
Vera
Hi Vera.
Go to http://www.parkinson.org and click on "Ask Dr. Lieberman" about
halfway down the page.
Hugs.
Pam
I'm trying to fine the way to get to "ask the doctor". I know I have
seen it on here and that it has a way to put in question. When I took
Fred to the doctor the other day, The doctor was talking about a med
that will be coming out soon and I wanted to ask a question about it.
It is suppose to be of help to cerebal palsy, but the doctor said
they think that it may also help PD. Was wondering what it was and if
it would be used the same way with MSA as the other PD meds are. Am I
wrong or was it on here?
Thanks Vera
Ron,
Well said and absolutely true.
God Bless,
Jim Stark
Hi all!
Bob and I want to wish all of u a healthy and happy new year and
holiday!
nancy and bob
Vera,
Actually, Reagan banned fetal cell research which at the time they though could
help Parkinson's, Altzheimers and Juvenile diabetes. This was after the panel
to study the research voted 18-3 to go ahead with the research. Since NIH then
had a bid surplus of money, and Congress and the President were pushing AIDS
research - NIH shifted the emphasis to AIDS. Since all the researchers had
pinned their hopes on the fetal cell work and it showed great promise from work
in Mexico, China and privately here in the USA - this severely damaged PD
research.
Clinton allowed the fetal cell trans plant research to go ahead 12 years later
(in 1993). A total of less than 1000 fetuses was necessary for the 80
transplants. The fetal tissue transplant worked, but did not last as the cells
did not renew themselves (at least that is the best info at this time). Those
fetuses were obtained from legitimate sources such as a pregnant woman dying in
a car accident and the fetus could not survive on it's own - the spouse would
still have to give the informed consent to use the cells.
Since 1993, all the major breakthrough's have occured. Researchers did learn
from this that the fetal cells were too "old" and set in their ways to use for
brain cells and then started looking at the makeup of the cell itself. This is
when they discovered the stem cells. Someone got the idea of using the in vitro
blastocyst cells and found that they were completely "neutral cells" and did not
yet know what type of cells they would become. That led them to the fact that
the cells were "programmed" with chemicals from the mother. McKay at NIH has
found the combination of several chemicals that it takes to make the pluripotent
stem cell grow into a dopamine producing neuron and reproduce itself. They have
learned that certain types of bone marrow cells can be genetically altered to
help certain cancer patients. But so far that is the only adult stem cell
research that has shown great promise.
Research is like building with childrens blocks. Each block on the first row
helps make a strong house. If you pull out one of the foundation blocks the
house (or research) will fall.
P.S. did you read that the President-elect's mother-in-law was getting out of
the hospital from "lightheadedness"? She is in her 80's so it could be
something like low potassium.
Take care, Bill and Charlotte
=====================================================
hi vera: bob's neuro increased the mirapex dosage to .75mg. daily & in 2
weeks he will increase it to 1mg. daily. sure hope it works, because his
foot is sticking alot, especialy when he starts to walk. let me know if
it is helping your husband. does he have the OPCA form of msa? if so,
what other medications is he on? regards, jerrie
Today's thought is:
Sharing our experiences with other people gives
them hope.
Most of us, sometimes feel desperate, overwhelmed
with fear, about our lives or someone else's life.
Our worry can be incessant, and we doubt we'll ever
be free of it. But the darkness begins to recede when
other people shared how they had handled
a similar situation. Hearing the traumatic times are
survivable gives us the strength to continue our
journey. From other voices we hear hope, and we
realize that we'll be okay.
Giving away what we have learned continues the
miracle of hope. In this way we are the keepers of
our brothers and sisters. Making the journey
smoother for someone else lightens our own
struggle every day.
Helping someone by sharing a part of my life today
will help me remember the lessons I have learned.
Merry Christmas, Happy Hanukkah, Happy New Year to all Bernice/Ken dec.
06-23-00
* * * * * * * * * * * * * * * * * * *
what a novel idea
Hi Jerri:
Sorry to hear the mirapex isn't helping your husband Bob. Fred's
doctor took Fred off of it, but he has now put him back on it.It seem
he needs it.
I haven't been on the forum for the last week, so that is why I
didn't get back to you. Have you taken Bob to the doctor yet? I have
an appointment for Fred with the Neuro on the 12th of Jan , to see
how he is doing now. The p/t seem's to be helping him get stronger in
the chest and arms, but the legs haven't changed any. Now the
movement seems to get stuck in place, he hasn't had that problem for
awhile. So am wondering what that means.
Hope that they fine something that will help your husband.Let me know
if they do and if I fine anything else that helps Fred, I will let
you know also.
Hugs
Vera
The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller
Hi Bill
Yes my eyes have changed in colour. Used to be all blue now brown and blue.
Could be causing the reflection, though no further episodes of swirls before my eyes. I have an appointment with my eye specialist in Jan.
I love your eyes, though isn't it green for envy!! :o) Oh dear oh dear!!
No we don't have a Holden, we have a Nissen Bluebird station wagon. Almost as old as me!! Keeps on going though! I think we are keeping pace. Poor old thing has a few problems now!!
Love Anne
Someone has mentioned before that the eyes of a MSA patient get some sort of 'flecks' in them. That may be causing the 'reflection'.
[INLINE]
Of course, it could just be wierd Anne :o) You never answered, do you have a Holden?
Take care, Bill and Charlotte
Forgot to say on this one to click on centre arrow. 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 Bill:
It must come in the rules of being 7 kids in a family. Alway 5 girls
and 2 boys. Your mother, and Freds family being that way. Fred's
brother also married a girl that comes from a family of 7 kids and
what else they were 5 girls and 2 boys, but then it takes 5 girls to
get 2 boys down. Right?
Vera
Ok! I guess this is the best time to ask this question, I see that
some of you are talking about the condom catheter, and I am wondering
if anyone has tired a balloon for this same reason? I took Fred to
the MD last week, the doctor said that Freds bowels are starting to
stop working. I also told him about Fred not getting up at night
because of the Clonazapam, and not making it to the restroom at night
and most nights we are doing the sheets, he told me to get a balloon
and use it on Fred during the night and then just wash him good in
the morning. I asked him if it was just the balloon that you get at
the store and he said yes. I have never heard of this before and I
wonder if any of you have tired it. I know this is a strange
question, but had to ask and see if it has worked. With this illness
nothing wouldn't suprise me.
I really don't think the doctor was pulling my leg, but who knows
Vera
I remember someone saying that President Reagan had the funding that
was being used for studing Alzheimer's go to Aid's study. Maybe if he
had used some of the money on the study of Alzheimer's he wouldn't
have it now. Could this also happen to President Bush? Stop the study
on Stem Cell Research and maybe need it for someone close to him or
himself someday. This is something to think about Mr. President.
One never knows what life has for us, do we?
Vera
Hello Dawn:
I haven't been on the forum for the posting for over week, so I just
got around to reading what Carol had said about her husband and the
REM behavior. My husband Fred is alot like Carols husband. I've also
been strangle, had my hair pulled out in my sleep. The doctor also
put Fred on the clonazapam, that seems to help with the REM behavior.
Always Vera
Dear MSA Group,
I just wanted to say thank you for the strength of your collective spirits. You are truly an amazing group of people and I wish you all a wonderful Holiday.
Merry Christmas,
Dawn Morley - Celeste O'Neill's sister
Dear Joyce:
My prayers and heart goes out to you at the lost of your husband. I'm
really sorry that it has to be at this time that God has called him
home, but God always knows when we have done what he has put us here
on earth to do. So you know that your husband has done the job that
God set out for him to do, because he called him home.
God Bless you Joyce
with love .
Vera
Joyce, I am so sorry to read of your dear husbands death. I know what you
mean about being joined, (Al and I were married 50 yrs. in Nov)..
God bless you and your family, your will find it hard to fill that void,
but with God's help you will make it.
Ann from Soddy, TN
Joyce
I'm so sorry to hear we have lost yet another member of our family.
Know I am thinking of you at this time and you have been in my thoughts
often lately.
Sally
Card from Jim Stark Click below to view Jim's card.
Barb,
We always built snow families (or snow forts, even made blocks and built an
igloo once when we had lots of
snow). Usually the snow women looked like Dolly :o)
Mom got mad when we put her dress on one of the snow women once. Did get a
little muddy :o) She made us do
a whole wash load (in the old clunky washer where you had to wring it out
manually). Our dryer was wash
lines out back - rough in this kind of weather :o)
The girls always built snow families and Shane builds snow forts with windows
and doors. What good is snow
without a snowball battle?
Darn, couldn't find a snowball to throw at you :o) have a hug (Barb)
Take care, Bill and Charlotte
To Everyone in our MSA/ShyDrager Family (shydrager@egroups.com),
You have been sent a virtual post card from (pbower@...).
To pick it up go to:
http://ecards.toronto.globaltv.com/services/piglet/index.cfm?id=riasmobde5&SK=TO\
RXMAS
(ID:AAAAofAAFAADZI/AAC)
My heart is filled with gratitude to Almighty God for his unspeakable
mercies with which He has
blessed us in this day. For those He granted us from the beginning of
life, and particularly for
those He has vouchsafed us during the past year [of war]. What should
have become of us
without His crowning help and protection?
"Oh, if our people would only recognize it and cease from self boasting
and adulation, how
strong would be my belief in the final success and happiness to our
country! But what a cruel
thing is war; to separate and destroy families and friends, and mar the
purest joys and
happiness God has granted us in this world; to fill our hearts with
hatred instead of love for our
neighbors, to devastate the fair face of this beautiful world!
"I pray that on this day [Christmas] when only peace and good-will are
preached to mankind,
better thoughts may fill the hearts of our enemies and turn them to
peace."
--Robert E. Lee
The first state to declare Christmas a legal holiday was Massachusetts
in 1856. Although, as late
as 1886, an American Methodist newspaper termed Christmas a day "on
which more sin and
sacrilege and pagan foolishness is committed than on any other day of
the year." Nevertheless,
by the Civil War era, most of our shared Christmas traditions were set,
and the January 3, 1863
issue of Harper's Weekly featured a drawing of encamped soldiers
receiving Christmas gifts from
home. Nearly all Americans (96%) celebrate Christmas today in some form
or another.
______--------********O********--------______
We Christians believe that Christmas was a necessity because
our hearts are deceitful above all
things, desperately wicked, and unfathomable so. Christmas addresses the
duality of our human
nature. We are so depraved, God had to mount a personal rescue mission
on our behalf; we are
so valuable, He considered sacrificing Himself worth the exchange. Only
a Gift would suffice to
redeem such creatures into freedom....
To mark Christmas 2000, the Christian patriarchs and spiritual leaders
in the Holy Land have
crafted a joint message that is as applicable to our land as theirs,
that "our people will not enjoy
many of the customary Christmas celebrations in this land this year.
...We have heard and
accepted the Gospel of the peace of Christ and we are his witnesses and
ambassadors who are
entrusted with the message of reconciliation. ...[T]his very hope may
become an in-breaking of
light and a resurgence of faith. ...[So that] we, not unlike the
shepherds, can go forth into the
darkest of nights, glorifying and praising God who came to save human
kind and to fill the earth
with justice and peace."
"A Merry Christmas to you all! Long live the true King!"
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+++++++++++++++++++++++++++++++++++++++++++++++++
We have so much to be thankful for even tho there are tears flowing
today because of illness and death of loved ones. I pray the King will
meet your every need and comfort each with His love in abundan