Hello John and Rose:
Thank you for your quick response. John- Bill says
"tell him thanks because it's good to hear from somone
who understands what I'm going through.
The message reduced my anxiety. "
Rose- Bill will be seeing our family doctor tomorrow.
I'll ask him to recommend an audiologist.
Bill and Aida
Just FYI - Laurelle is the hospice nurse for my dad. Any ideas or suggestions that you can give her are greatly appreciated!
Jennifer Worth in Plano
Anne is now only 4 hours away from hearing about all of the results of the
angiogram. Keep all of your thoughts and prayers headed her way. Debbie
Hello Everyone...
I am new to the list but have already learned a lot. My Dad, Elton, will be
71 in April. He was misdiagnosed with Primary Lateral Sclerosis 2+ years ago.
Last week he was diagnosed with MSA. What I have read on this list and on the
site makes much more sense than PLS. Needless to say I am feeling
overwhelmed. Just since Thanksgiving he has started really going downhill. He
has become incontinent more frequently and really has balance problems. He
broke his hip in August 2000 and I doubt that he will fully recover. I don't
know where to turn. I live three hours away from the small town he lives in.
Being in Nebraska I am not sure if there are specialists or what kind of
support I can find for him. I will do whatever I can to help him and provide
or get him the kind of support he needs and deserves. I am also wondering if
there is basic medication he should be on. The neurologist we just saw took
him of Meclizine (Anti-vert) which has actually helped him. Dad said today
that he feels a little better being off of it. Any ideas about where I can
turn...thank God for you all and this list. It has helped already to feel
less alone.
Lynn---Omaha, NE
Pam,
Unfortunately, adult stem cells have never been convinced to grow into dopamine
producing neurons. With the in vitro blastocysts, they have not only been
turned into dopamine producing neurons, but they have also cured PD in mice.
They have made adult stem cells grow into neurons, but they do not produce
dopamine.
The adult stem cells show promise in treating some forms of cancer. But there
again, other forms of cancer have only shown promise with pluripotent stem
cells.
The other big problem with this research is that it is so new. They have not
looked at the problem of whether they can control the growth of the cells, once
they trigger them to grow which could cause tumors or cancer. The work at Johns
Hopkins has already looked at that for pluripotent stem cells. Basically, we
need to keep working on all forms of stem cell research, and not ban one
particular type.
Take care, Bill and Charlotte
==============================
Melanie,
Artane is in the same class as Cogentin or Amantadine called Anticholinergics.
They tend to stop cramping and dyskinesia. I have no idea if it would help
dystonia.
Take care, Bill and Charlotte
=================================
Try putting a rubber pad under the bike. Al has one that he use to use
when he had both knees replaced and it did have rubber grippers on the
legs, it would not work on carpet, we then put him in the kitchen and it
didn't walk away because the grippers worked on the tile floor.
Ann from Soddy,TN
I'm still trying to find the magic pill for my dad's
cervical dystonia. :-) Someone from the Dystonia
Foundation asked if he had tried Artane. Is anyone
familiar with this drug? I looked it up on WebMD and
it says it's used to treat Parkinson's. I know my dad
hasn't tried this one. Any info?
Thanks!
Melanie in OK
One husband thinks that Tasmar has helped him. More when he first begin
taking Tasmar than now. He does not want to try without it.
Marilyn
Just read this. Barb
http://www.msnbc.com/news/525007.asp?0cm=c10
Thanks for your idea. We thought of something like that. Our only thought is
that there are times when he is home alone, and pretty much bound to his chair.
We are trying to come up with a solution that he could manipulate by himself.
If we tied it on, then if he had to get up to use the restroom, with his balance
as bad as it already is, we'd be setting him up for tumble.
Really appreciate your thoughts...
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
You may be able to just tie it to the front feet of the chair
with clothesline or pass a clothseline loop aorund the chair
with each end tied to the bike.
Just don't trip on the line.
plywood under the front legs of the chair. With the chair sitting on
the plywood and the pedal bike attached to the plywood - that should
keep it in place.
Dr. Leonard's catalogue. I ordered it for my Dad, however it is
extremely difficult (impossible) to use without sliding away from the
chair on the floor. Dad uses a lift chair. Any ideas or solutions
which have worked for others. We're really trying to think of
something to keep circulation and a bit of mobility going.
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
You may be able to just tie it to the front feet of the chair
with clothesline or pass a clothseline loop aorund the chair
with each end tied to the bike.
Just don't trip on the line.
plywood under the front legs of the chair. With the chair sitting on
the plywood and the pedal bike attached to the plywood - that should
keep it in place.
Dr. Leonard's catalogue. I ordered it for my Dad, however it is
extremely difficult (impossible) to use without sliding away from the
chair on the floor. Dad uses a lift chair. Any ideas or solutions
which have worked for others. We're really trying to think of
something to keep circulation and a bit of mobility going.
Sheila,
Unfortunately I don't remember where, but someplace in your system you have to
change your primary browser back to Netscape 4.7X. I did this at one time, but
don't remember where it was.
Good luck, Bill and Charlotte
hi everyone: my husband,bob, has an appt. with the neuro tomorrow & i
would like to know if anyone has any suggestions about a med i could
inquire about. he's been on simemet & mirapex, but taken off both
because of lack of response. he is off balance, needs wheelchair outside
& has dysarthria. he doesn't have the shydrager symptoms. thanks for
your replies. regards,jerrie
Bill ...and John Fisher ..
I have a problem opening attachments that have the Netscape logo ... keeps
saying can't find Netscape6.exe ... I went back to 4.7 after the fiasco with
6 .... how do I fix this?
thx for your help ... this is a pain in the neck ...
sheila
Tim,
With MSA, many muscles tend to go into spasm and contract. That is why we
advocate speech and physical exxercise, especially range of motion exercises.
Part of Charlotte's speech therapy is deep breathing exercise which does cause
the stomach muscles to be exercised. It is important with MSA to keep muscles
extended as much as possible.
"Use it or lose it"!!
Take care, Bill and Charlotte
Hope someone can help with this.
Pam, do you know of any?
Thanks, Don
HI
I HAVE LACK OF MOVEMENT IN THAT AREA. I AM NOT AT THE END STAGE.
HOWEVER, I DO HAVE TO EAT PUREED FOODS AND MAKE SURE I SIT UP FOR A FEW
HOURS SO THAT THE FOOD GO DOWN BY USE OF GRAVITY. ALSO, SMALL AMOUNTS
OF FOOD IS SERVED. VERY SMALL.
NANCY M.
Laurelle,
Thanks for the information concerning the lack of esophageal movement. I
wonder why this happens?
Tim
I am happy to hear that your work is progressing. I woudl be happy to read. I have a little bit of experience in editing school materials.
Best wishes to you.
Marilyn in TN
David,
Iam sorry that you must read this list, but with you in Memphis, you or your
family will want to know about the support group that meets there once a
month. Amy Beckman, who also participates in this group, works with a
doctor at UT med to organize the meetings. Last month, Amy was out of town,
but we drove down from middle Tn and there was another couple there from
Jackson, MS.
I personally think the groups can help either the patient or the caregiver.
The groups can also help make the public be more aware. The public must
become more aware before there will ever be enough research to find a cause
and a cure.
Marilyn in TN
Hello all. I normally just lurk and read but here lately I've been unable
to even sit at the computer. Alot of e-mail got deleted before I got a chance
to read it so I hope that everyone is doing ok.
David
Memphis TN
Aida,
I'd suggest taking Bill to an audiologist for the hearing test; they will
refer you to an ENT if they feel it's necessary.
Rose
Greeting Aida!
Tell Bill he's not alone! When I had a hearing test during the early stages
of this, it about drove me crazy. They were using white noise to blank out
the outside sound. The two differing sounds (one in each ear) is very hard
for me to handle. And yes, it did make me dizzy / uncomfortable.
Good idea. It was the best thing I ever did. I knew that I was having
problems seeing. But it was hard to quantify.
Well, my neuro-opthamologist clearly pinpointed that (a) my eyes were in
good shape and the 'camera' was receiving a good picture, but (b) the owner
couldn't keep the 'camera' still. Essentially my cerebellum is not properly
controlling my eyes to allow good vision. As a result, there is a lot of
problems holding the eye steady, following movement, flitting from one focal
point to another, etc. So, it can be hard for me to read.
Understand, I can still see. It's just hard to see clearly. My vision
normally starts off fairly okay (early in the day). As the day wears on,
and I get tired, my vision gets markedly worse. By the end of the day, the
words on the screen (even with the large font) are a terrible blur.
Unfortunately, there is little that can be done about the root problem.
BUT, I can and have decided to cope. I try to have a selection of listening
tapes. I will watch/listen to things on the TV. (But if vision is really
bad, I avoid the TV).
Certainly that should be followed. The surgery to correct a cataract is
fairly straight forward. The results justify the process.
Possibly muscle spasms? I have problems with cramping. A couple of weeks
ago it suddenly hit my lower back. I was bent over for several days due to
the lower back pain. Never had problems like that before.
Hope that helps.
Regards,
=jbf=
John B. Fisher
Having worked for Hospice, I've heard the question about the effects of
Morphine many times (as well as the question of "artificial" nutrition &
hydration.) Yes, one of the effects of morphine is to depress respiration
to a certain extent. It is a question of benefit vs burden. Sometimes a
tradeoff has to be made to achieve proper pain control. (However the proper
dose is key; certainly overdose would cause immediate death.) One of the
things hospice helps families understand is the difference between
prolonging life and prolonging the dying process (something to avoid) and
how to recognize the difference. I have seen families who have been dealing
w/ a long term chronic serious illness not recognize when the situation has
changed. So the use of morphine, and it's unintended side effects, is very
situational and one's goals make the difference. Hope this is a help. Mary
Hey Everyone,
Dawn just got back on line last night. She installed the New Norton
Security 2001. Then went to there website and updated on line. Just
this morning she turned on her system and she was e-mailed the
Snowhite Virus, her Norton caught it! She is freaking out! Since she
had the system repaired from the Worm Virus. So stay updated and
watch before you open anything reads HAHAHAHA Snow White!
Celeste
Well I did ok with my sleep study. I actually slept better than at
home. I am certain I was so worn out from our trip to Cancun I
couldn't help but sleep. I managed to fall asleep by 10:45PM,
without Benadyl. I had 3 arrousals and awoke at 3:OOAm. Got up used
the restroom. They told me I had to try to fall asleep again. Around
4:00Am I feel into a very light dose until 4:45AM then I awoke
again. They had me stay in bed to 5:00AM. They require you stay
down for 6 hours. The tech said she thinks I had 5-15 mins of apnea
between 10:45PM-3:00AM but she really isn't a doctor and I'll have to
wait for them to read and write there report. She did suggest I
discontinue the Benadryl until I see the Neurologist again. Because
MSA patients with sleep apnea shouldn't take any kind of sleep aid or
sedative. I'll let you know more when I find out what the written
report shows.
Celeste- Cold in Indiana
Barb and Michelle,
The test is for ferritin in the blood. Evidently that is some form of iron. If
that is elevated they will want to run a test for a specific gene deficiency.
It's in the article Sheila sent this AM and Barb Knight sent yesterday morning
http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=43&id=107731
It is NOT a treatment only a diagnostic tool.
Take care, Bill and Charlotte
=============================================
Marilyn,
Hi! The book is coming along. I have 100 pages written. My biggest problem is keeping myself in the chair. I am a very high energy person, (I run ultra distance races...longer than marathons) and I'm up and down, up and down, and so, the pages come slowly. I tell myself I'm thinking about it all the time I'm flitting around. But I work early in the morning (5am) and in the evening/night, so it seems to be getting written, bit by bit.
I've decided to polish it up the best I can, then send it off to an agent. I am happy with what I've done...I seem able to shape it the way I want to (so far). In fact, I was going to ask if a few of you if you would like to read it and give me feedback before I send it out. I would not be ready to let you see it until ...probably late next week.
Luckily for me, I have an agent who WAS interested in the idea, three years ago, before I went to Mongolia. I believe he would still be interested. So, that big hurdle had been leaped (I think).
Anyway, that is where I am, and there you have it.
Jane.
PS to Barb (if you're reading this) Trey is adorable, and since he's a karate expert, I'm sure he can whip any illness! :-)
Nope Not in Texas. My box is over flowing.
Why are you up so late?
Barb In Arlington
[INLINE] Almost February in Texas country
Is everyone having trouble getting their mail?
Jim Stark
Pam,
Thanks! I am really learning a lot by reading on this site - everyone seems
so caring. My patient seems to be much worse than most of the people I've
read about.
He is unable to walk or move himself at all. His arms and legs are all
contracted. His head pulls severely to one side. He is unable to speak and
cannot even communicate any more by blinking his eyes when asked a question.
I know however, that he is there mentally, because his eyes possess
intelligence. He can grunt (actually blow out air) and smile some to express
some emotion.
His wife has done an absolutely marvelous job of caring for him and she is a
delight for me to get to know. She uses a Hoyer lift to transfer him from
hospital bed to lift chair to wheelchair.
Because he is so contracted, he can only lie on his back. She has a special
cushion that he sits on during the day that she can reposition him to
provide some relief from the pressure.
He receives nourishment from a feeding pump and tolerates it well.
Our main problem is that his bedsore on the bottom of his rear is beginning
to get red again and the skin has broken in a couple of places. We are
really trying to be pro-active in preventing further breakout.
If anyone has ANY SUGGESTIONS, I would GREATLY appreciate it.
I have only had him as a patient for two weeks. I should tell you that I am
a Hospice nurse and he is so untypical of my other patients.
Thanks,
Laurelle
http://ipn.intelihealth.com/IPN/ihtIPN?st=23883&t=7223&c=310191
I'm glad that you are back, and of course that you are virus free. Pam and Bill were both very helpful to me as well when I had problems that had nothing to do with a virus.
Marilyn in TN
Marilyn in TN
Hey everyone! After hours of beating my head against the wall I finally got my computer up and going after the David Richard virus attack the first part of January. I am now qualified to be a systems analyst. What a learning experience.
To those who caught the virus from me after I caught it from somebody else I am sorry. It went past my Norton Version 5.0. I now have Version 2001 and that won't happen again hopefully. To whoever I caught it from.....thanks for turning me into a computer technician.
I have missed chatting with all of you....You are truly a great bunch of folks. I'm glad to be home.
A special thanks to Pam Bower for trying to get me up and going. I had to tear my system down and rebuild it. DOS just would not replace the damaged files. Also thanks to Bill Werre and my sister, Celeste, for agreeing to let me send them an e-mail to be sure the virus was gone before I got back on the Web site. I didn't want to infect anybody else.
Back in business in Indiana,
Dawn Morley - Celeste O'Neill's sister
Hi Bill, what's a "serum ferritin assay " test for?
Take care
Fordy's Michelle in Oz
Pam,
Thanks for exlaining things about the membership list. You've cleared up a
great deal of confusion at least for me.
Barbara Pond
Hi Jeanie,
You will love Dr. Gilman. He dx'd my husband, Mark, in Nov. of 1996. Mark
had been having symptoms for about 3 years and we went many places and could
not find a diagnosis. Dr. Gilman dx'd him immediately. We're just sorry we
are so far away now and can't get back to Doctor with him. We lived in Ohio
at the time but moved to Hilton Head Island, SC after Mark had to retire due
to his illness.
Take Care,
Judy Whittaker
Hi Christine,
I know morphine can affect the respiratory drive, the info I have read and studied about this drug is that if respirations are less than twelve to hold the drug. From my experience with hospice, the main goal for the patient is to keep them as pain free and comfortable as possible. MS Contin and Oxycontin are two drugs that are used a lot in our area. If the pt. is unable to take the pill by mouth, you can give MS Contin rectally. Both of these drugs worked real well for my daddy.He had colon cancer. I went to a conference on death and dying and there was a doctor from a major hospital in the north speaking. He highly recommended Percocet for chronic pain, its very cost effective and there has been good results with pain control.
If I can think of any drugs that may help your mother I'll let you know. Watching our love ones suffer is a hard thing to do. You will be in my thoughts and prayers.
Kathy
I never could sleep with someone else watching me. Let us know how it
works. Barb in Arlington
http://sendingfun.com/virtualnap/flash.asp
Hooray for Trey! Glad he'll be ok--and soon! Jan is not a candidate for repairs. We'll have the huge hip hole to cope with from now on. Horror story began Feb 10 after 5 minute cystoscopy procedure. Exam was to "justify" 3 week home health cath replacements when checklist said monthly. Emergency retention averaged 1600 cc's after geyser eruptions. He suffered. We traded the [sic] aerogenic bladder dx for a 10" round black bruise over his hip replacement. Jan now has a stage 4 untreatable hole with exposed bone center requiring twice daily dressing. He also got a similar but smaller wound on his right foot. He STILL has emergency cath replacements but no burst bladder yet. Thanks for all your help. I do not believe he could survive another debridement much less skin flap grafting. It is so hard to see him suffer. Louise
bill thnx for including us!!!!!!!!!!!!!bt
way to go .... keep us up to date (as if you don't already ;-]
cheers
sheila
Hey everyone,
I am having a sleep study done tonight, I'll let you know how it
goes. They are supecting either apnea or some movement problems. I
don't think I get much REM sleep. How every I just returned from
vacation in Cancun, I slept best there! I'm gonna go back! hehehe
Dawn might me back on line tonight!
Celeste
Bill,
I must have missed something. What's this about?
Thanks!
Melanie
Wow. He is absolutely darling. Please be sure to keep us posted.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Just to give a face to the prayers you are offering, Here is Trey.
Barb
[Image]
Hello: Bill is having problems with his hearing and eyesight. We would
appreciate any information regarding hearing tests. He had one about five
years ago, and complained that the sounds made him dizzy. That was before
his diagnosis of sds in 1997. Does he have to see a specialist? Should it be
an ENT?
He had an eye test last year, and the opthamologist said his sds condition
should have no effect on his eyes. Yet, he is reading less everyday even
though he buys large print material. I saw in a message the words Neuro
opthamologist. I am thinking maybe he should see one for his next eye exam.
Last year, the opthamologist did say he had a cataract developing in his
right eye.
He still has the backaches. The doctors' say it's related to the sds, but
cannot explain how/what causes it. I think if Bill knew what is causing it,
he might feel better about it.
I am getting a little weary. Too many thinkgs to attend to, and I work full
time also. Don't mean to complain, but we didn't plan on this ..I guess
noone does. There are good days and bad days. Let me blame it on the weather
in the East.
Aida and Billo
Just to give a face to the prayers you are offering, Here is Trey.
Barb
[INLINE]
"Ode to the Spell Checker!"
Eye halve a spelling chequer
It came with my pea sea
It plainly marquees four my revue
Miss steaks eye kin knot sea.
Eye strike a key and type a word
And weight four it two say
Weather eye am wrong oar write
It shows me strait a weigh.
As soon as a mist ache is maid
It nose bee fore two long
And eye can put the error rite
Its rare lea ever wrong.
Eye have run this poem threw it
I am shore your pleased two no
Its letter perfect awl the weigh
My chequer tolled me sew.
Hi all,
I just received an email back from Dr. Rouault at NIH. She wants Charlotte to
have a serum ferritin assay and let her know the results. If she decides she
wants to see Charlotte, I'll let her know where we can get more volunteers.
I'll also know how much is involved.
Take care, Bill and Charlotte
Thank you for the info. I will check it out today. Marilyn
Barbara K,
That is a very interesting article. While the article does not mention it directly, it also shows a possible connection between MSA and CBGD (another PD+ disorder).
"Researchers detected significant amounts of abnormal
iron deposits in the cerebellum and the basal ganglia,
both brain parts involved in movement. And by killing
mice at various stages of development, the researchers
saw that the iron deposits preceded brain damage,"
If this could be traced to a specific gene, we would all be closer to a cure.
Take care, Bill and Charlotte
Thanks Barb this is very relevant to our list! Notice that Donna Gruetzmacher, executive director of the National Ataxia Foundation is quoted in the article. Her husband Arnie Gruetzmacher is the chairman of their annual conference coming up the weekend of April 6th to be held just outside of Minneapolis, MN.
See: http://www.ataxia.org/amm2001/index.html
http://www.ataxia.org
Dr. Sid Gilman (MSA expert) will be speaking at that meeting.
Hugs,
Pam
Laurelle,
There are several tings you can do to help with the SND patients care.
* You must be aware thet MSA (SND) patients often have a "normal" temperature
of
as low as 96 deg and that they are prone to infections - so a temperature of
98.6
can be a fever. Ant sudden change for the worse is a much better indication of
an infection than relying on temperature. Things like unusual fatigue, lack of
energy, sudden onset of stiffness should trigger warnings of an infection (UTI,
pneumonia, blood or even a yeast infection.
* Exercise does help maintain movement. Physical and speech therapy help most
patients, if done every day. This does not mean it has to be aerobic exercise,
range of motion exercise helps most. The speech exercises help with swallowing
also. If the swallow reflex seems to be gone a speech therapist may be able to
bring it back with a technique where they massage the right area with an ice
cold
dental mirror. My wife had to get a PEG in 1998 when she had no swallow reflex
and they brought the reflex back inside a month. She kept the PEG as it allows
her to get the fluid and nutrition she needs without undue strain. But she
currently eats about 50% by mouth - she gets about 95% of her liquids by the
tube.
There are medicines which help some symptoms. It is best to see a movement
disorder specialist to find the correct balance of medicines.
Take care, Bill and Charlotte
================================
Dear Pam,
Thanks for all the information from Dr. Gilman. My husband will be seeing
him next week and it is nice to know he is respected in his knowledge of
MSA. We live way down south in Mississippi.
Jeanie
Hi Sally:
I know I shouldn't of asked about what your mother wanted, but just
had to ask anyway. At least you can laugh today. That's a good sign.
glad to see someone is making money out there. What's your brother
secret? Story of your life sounds about the same as mine. We had a
nest egg, but I think it went south with the birds. Oh well what can
I say"story of my life".lol
Almost had the other four grandkids along with Hannah today. Jenny my
daughter in law sister had her baby today, a little girl. So Brett
called to see if I would watch the kids so Jenny could go see her
sister. I tolded him I would. Well it was also Brittany (grand
daughter)birthday today so I ran up and got a cake for her, then
Brett called and tolded me that the kids were going somewhere else.
Now I have a birthday cake here and no birthday girl to eat it. Only
good thing it's chocolate, but then what else could it be? Gee guess
I'll just have to eat it myself. Poor me.
Hugs Vera
Hello everyone,
What kind of pain medication have you all found that works best for
patients with MSA?
My mother has been suffering from horrible headaches for some time now.
In the last several weeks we have tried both Demerol and Morphine.
Morphine is the only thing that has helped the pain but it (as well as
the Demerol) makes her "squirly" and very unmanageable.
I have voiced my concerns to the Hospice nurse because I have read, on
this list, where one or two others felt that Morphine slowed the system
down so much that it lead to the demise of their loved one.
I don't want Mother to hurt but I also don't want to harm her if I can
help it.
Thanks for your help.
Christine in Madison, TN
Hi Marilyn:
The Medport that I have is really called the Med glider by Medport
and I just love it. Should of had it along time ago. I found mine at
Savon for $17.99. It a Pill case that has four programmable dosage
time settings and a missed pill alert. You can choose from a beeping
alarm, voice alarm or a visual alarm.I don't know about most of you,
but I would fine myself getting busy and forget the time and be late
sometimes for Freds meds. Now he get's them at the same time
everyday. No more getting to busy to forget, the alarm goes off and I
just get the case and Freds has his pills on time. I've enclosed the
address of the company from the back of the package also the web site
for them. You may want to check it out.
Medport
23 Acron Street
Providence, RI 02903
Questions? call 1-800-368-7248
E-Mail: medport@...
Website At:www.medportinc.com
Take Care
Vera
Diane,
I know how you feel, my husband is 53 and was diagnosed with MSA in March
2000.
It has been a very difficult 6 months, as his disease has progressed rapidly.
I don't recall him having loud breathing, he did have loud snoring when he
slept. My thoughts and prayers are with you and your family.
Donna, Norman, Ok
Hi Laurelle, We're glad you joined us. One thing you'll discover from the
list is that there is no clear cut profile for someone at the end stage of
MSA. Many of the symptoms you're seeing in your patient can occur much
earlier in another patient and they are certainly no where near the end
stage. That's just the nature of this beast MSA.. it has a mind of it's own
and follows no rules.
Take care,
Pam
Hi Laurelle,
My husband, Mark, was in our family room on Nov. 26th watching TV in his
wheelchair while I was taking a shower. When I came out of the shower he was
in the kitchen and white foamy liquid was pouring from his mouth and nose
like I've never seen before. I called 911, they transported him to the
hospital and he was in ICU for 17 days. Seems he had a larayngo(sp) spasm
which closed his airways and his lungs filled with fluid and he was literally
drowning. It was unknown whether he aspirated something (he was drinking a
Coke) or whether it was a cardiac problem. He developed aspiration pneumonia
and after several tests the conclusion was aspiration.
Six days later while still in ICU he had another episode just like the first
one and they sedated him from Friday until Monday and kept him on a
respirator so we could decide what we wanted to do. Options were to put in
the trach and feeding tube and see how he did with that or remove him from
the respirator and see what happens. His children and I decided that we
didn't want him to go through another episode like the first two so we went
with the trach and PEG tube. After the trach and PEG he went through a
chemical stress test and a moderate blockage was found which is being treated
with meds due to his condition. All of his Doctors agree that it was
aspiration and the blockage was something that wasn't bad enough to cause the
situation. He has since had the trach changed out to a smaller one, had
another barium swallowing study and didn't aspirate so he's keeping the trach
and can have thickened liquids and pureed foods. He no longer requires
nightly feedings of Jevity through the PEG but we are keeping it for meds and
liquids.
Take Care,
Judy
Barb,
This is wonderful news.... I am so happy for your family.,
Patricia
Dear Loved Ones and Prayer Warriors along the net.
Trey and his mama were home from hospital by about one thirty this afternoon. Weary but happy that the diagnosis was not as bad as the fear of what it could be.
The problem Trey has is called myosistis. It comes along with a strain of flu and attacks the muscles and causes weakness and inflammation. Thus, the weakness and inability to move and walk. I offered him his grand dad's cane but he said he would be more apt to use a w/c. He was really miserable and scared. He was feeling better when I took Cody, his brother, home after school but he had just taken some pain medication.
Treatment is antibiotics and tylenol with codeine and bed rest for the next 5-7 days. So that means I go in to pick up homework tomorrow after school. As some of you know I pick up the three kids after school each day.
Thanks to all who were sending up prayers for us all day. God is merciful and does His very best to take of His own.
Much love to all of you. I cannot make the list of all who wrote but you know who you are.
Have a rest filled night and a blessed tomorrow.
Hugs to ya.
[INLINE]
Jim,
I doubt it :o) There is nothing new that we can find other than Comtan helps extend the benefits of Sinemet for some people. The previous email about Riszerol (sp) studies may help extend benefits also, but the results are three years off. If there is a major breakthough in the research, I'll bet this list finds out about it as fast as anyone.
Presently, having a doctor that will work with you to contain the symptoms and try different meds is about the best you can hope for.
Take care, Bill and Charlotte
===============================
Vera
Today I laugh, not so yesterday!! We are trying to get her moved back
to Ks so the last call was to tell me she couldn't because my brother
had "again" spent all her money and she had nothing!! Same story,
mother, your money isn't sitting in your bank account, it is in stocks
and bonds making money for you to live on. My mother, then where is it,
I can't see it!!
We do this about 4-5 times a week. My brother is ready to strangle her.
He keeps enough money in her checking account for her to live on and
then transfers monthly deposits into it. He has carefully built a nice
fund for her and she can live off the interest with only slight
withdrawals to the major portion. Plus she owns a small home which is
paid for. (I wish he had been managing my money, I'd be in pretty good
shape right now, story of my life!! =:
I'm glad you got out a little bit. Hang in there!!
The continuing story of "How To Live With Your Mother, Mother-in-law,
Father-in-law, 2 Daughters, 1 Son-in-law to-be and 1 Grandson and still
SMILE ........... yet to come!!!!!!!!!!
(I hope I can do this!!)
Sally
Some time ago someone had mentioned the pedal bike offered through Dr. Leonard's
catalogue. I ordered it for my Dad, however it is extremely difficult
(impossible) to use without sliding away from the chair on the floor. Dad uses
a lift chair. Any ideas or solutions which have worked for others. We're
really trying to think of something to keep circulation and a bit of mobility
going.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Thanks Dave & Chris! Excellent article.
Hugs,
Pam
Hello all,
A question for all. If one has a neurologist he trusts and seems well up on MSA, and there is a specialist in MSA 100 Miles away, Is there a rational for going to see this specialist?
God Bless,
Jim Stark
Vera, Please tell us about the medport, where to get, etc. that might be
helpful to us as well.
Marilyn in TN
We thought you might be interested in this article on Research that
was included in the Winter edition of The Sarah Matheson Trust
Newsletter. (SmarT). I scanned the document then edited it slightly
because it was columnised as in newspapers. I think it still makes
sense but you know what these medical people are like with their
jargon !!
Dave & Chris.
Research.
What comes to mind when you think about research? Images of Jerry
Lewis as the Nutty Professor or some top secret laboratory performing
amazing experiments ?
Most people realise these images are slightly fantastic. The recent
media focus on research means that most peopIe know more about the
potential medical benefits but little about the process of research.
Understanding this process is important for people whose lives are
affected by MSA and we hope the following rough guide will be useful.
Medical research can be divided into two areas, basic and clinical
research, with basic research forming the foundations of clinical
research. Basic research involves scientists working behind the
scenes in laboratories. Clinical research is the type of research
that someone with MSA may be asked to participate in..
Understanding the differences , between basic and clinical research
is important for appreciating research results. For example the
recent interest in the use of stem cells to repair nerve damage in
rats by the team at Johns Hopkins University in the USA. This small
study is an example of basic research and will need to be examined
closely by other scientists, including neurologists, to determine if
these results can be used ethically with patients. This takes time
and in research terms means several years.
There are many different types of clinical research questionnaires,
drug trials, research tests and scans, etc. All clinical research
because it involves people, must have ethical approval. This means
the researcher submitting their research plan to an ethics committee,
a group of health professionals and lay people who will consider the
purpose and value of each research plan. This ensures that no harm
will be done and that the patients, relationship with their health
care team is not compromised. It will also review all the information
given to patients. Ethical approval must be obtained before
approaching patients. When reading the results of clinical research,
either from a medical journal or the Internet, a sign of good quality
research is evidence of ethical approval.
Who does Research ?
Research is an integral part of institutions involved in medicine,
universities and hospitals. Key people within these institutions are
responsible for generating research. A hospital consultant, for
example will undertake their own research or work in collaboration
with other specialists as well as supervising junior
researchers.These junior researchers are often pre or post graduate
doctors.
,
All health professionals, to maintain good standards, use research
and you could be asked to participate in research when you see a
therapist or visit your GP.
How is Research funded?
Institutions that generate research use a percentage of their income
to fund research projects. The cost of research varies depending on
the size and scale of a study. The time needed to complete research
means that in general it doesn't come cheap. This can mean that
researchers seek alternative sources of funding. This can be from
drug companies or organisations interested in health care such as the
King's Fund or Charities.
How is research used?
Once a research study is complete, the description of the study
together with a discussion of the results is then written as a
research article. For the article to be published in a reputable
journal, it must first be peer reviewed by other experts in the
speciality area. The article may also be presented at meetings and
conferences. Vigorous discussion about research at these meetings
influences practice. At National and International conferences the
discussion can lead to a consensus on issues which may become the
accepted best practice.
How can I take part in research?
Regardless of how your care is managed you are not obliged to
participate in research. If you are interested you may see
information about research at your GP surgery or hospital. This may
be in leaflets, posters or newsletters but don't forget to let the
health professionals involved in your care know you are interested.
The best person to discuss medical research with is your consultant.
It is important that they know about any research you are taking part
in, as this may influence their management of your condition.
The researcher should provide written information for you about the
research, what it hopes to achieve, what you are required to do and
the effect this may have on you. You should also be able to discuss
with the researcher any questions you have. All research studies have
criteria for entry. If you are accepted into a research trial it
should be made clear for you that you can withdraw from the trial at
any time without any negative effect on your future care.
What research is going on in MSA?
Research into MSA is divided into different fields
What is MSA ?
A consensus statement in 1996 offered an international definition of
Multiple System Atrophy which hoped to reduce the confusion
surrounding the variety of names given to the disorder e.g. Shy
Drager. (Published in Neurology 1996;46: 1470)
Understanding the Condition
This includes the numbers of people affected, (Schrag A. Ben-Shlomo
Y. Quinn NP. ( 1999) Prevalence of progressive supranuclear palsy and
multiple system atrophy: a cross-sectional study. Lancet 354:1771-5)
as well as the most common features that aid recognition. One such
study from 1994 which also included details of the pathology (changes
in brain tissue) gives a comprehensive description of many clinical
features (Wenning GK, Ben ShlomoM et al ( 1994) Clinical features and
natural history of multiple system atrophy. Brain 117, 835-845). The
focus of the NNIPPS study hopes to obtain more information about the
progression of MSA.
How is MSA diagnosed?
Diagnosis is difficult to determine as the symptoms in the early
stages resemble other conditions, e.g. Parkinson's Disease. Another
consensus statement in 1999 presented international criteria on which
a diagnosis could be suggested (Gilman S, Low N, Quinn, N et al
Consensus statement on the diagnosis of MSA Journal of Neurological
Sciences 1999; 163: 94-98).
Currently there is no diagnostic test for MSA. Research to provide a
diagnostic test is ongoing. An example is the use of scanning
techniques (Burn et al The differential diagnosis of PD, MSA and PSP:
analysis of F-dopa PET data. Journal of Neurology. Neurosurgeryand
Psychiatry 1994; 57: 278-84).
What treatments are useful?
MSA, like many neurological disorders, relies on managing symptoms.
Not all treatments have been evaluated through research but examples
of those that have include; The treatment of postural hypotension
(Mathias CJ, Kimber J . Treatment of Postural Hypotension Journal of
Neurology, Neurosurgery and Psychiatry 1998; 65: 286-289). The
treatment of bladder symptoms (Beck, R. Betts, C. Fowler, C.
Genitourinary dysfunction in MSA Journal of Urology 1994; 151: 1336-
1341).
Research and Education
Some articles serve an important purpose by reviewing research
information. They provide an education tool by identifying areas
where progress is being made and areas that need more study. Many
provide a comprehensive overview for health professionals dealing
with the condition for the first time.
(Swann, L. Dupont, J. MSA Physical therapy 1999; 79: 488-494).
The references in brackets may be available through your library or
the Internet. Due to copyright restrictions the Sarah Matheson Trust
are unable to provide copies.
MSA Study Groups
Recently formed through European funding, this group will collaborate
the knowledge of the specialist centres studying MSA in Europe,
including the UK. This will enable greater sharing of information and
resources which will be more effective for time and costs. The
development of the European Study group is mirrored by the formation
of the North American MSA Study Group (including Canada). Discussion
between both groups will enhance future MSA research.
How can I find out about Research in MSA ?
Once a research study is complete (the information is collected,
analysed and written) it is submitted to be validated by experts in
the subject and then published. This is in one of a number of medical
journals e.g. The Journal of Neurology, Neurosurgery and Psychiatry.
Once published this information is accessible to all. Unless you are
a regular visitor to a library with access to medical journals
getting hold of these journals is difficult. It can be even more
difficult to understand the article once you have got it, as the
scientific style and medical language makes it heavy reading. These
problems of style and language are also present on the Internet.
The media does a better job of presenting research in a user friendly
way, the health supplements in daily newspapers and the explosion in
medical programs are testament to this. The only draw back is that
unless an expert is involved, for example Professor Winston in the
programme 'Super Human,' the style is achieved at the expense of the
content.
Natural History and Neuroprotection In Progressive Supranuclear Palsy
and Multiple Systems Atrophy (NNIPPS)
A new feature of SMarT News will be our research focus where we hope
to provide regular translations of current MSA research.
This study, which begins in January 2001, will gather information
about the natural history of two disorders, Multiple System Atrophy
(MSA) and Progressive Supranuclear Palsy (PSP) and look at the affect
of a drug called Riluzole.
Riluzole is a drug that has been used in the past with Motor Neurone
Disease (MND) and studies show that it slows down the rate of the
disease. Although MND, MSA and PSP have different symptoms, they are
all progressive neurologicat disorders. This study aims to determine
whether Riluzole will slow down the course of MSA and PSP, as well as
MND.
Patients will receive Riluzole or a placebo. Which one you receive is
decided randomly (as if by the toss of a coin). A placebo is an
inactive compound without any therapeutic benefit. This means that
half the participants in the study will receive Riluzole and half
will receive the placebo. Neither you nor your doctors will know
whether you are taking Riluzole. This is called a 'double-blind
trial.' Riluzole will not reverse your condition, i.e. it will not
make you "better".
Taking part in the study would involve seeing a neurologist every
three months for three years. During these visits participants will
be monitored for any side effects, which is routine in all drug
trials. The monitoring will include brain scans and the trial team
also hopes to undertake postmortem examinations of the nervous system
if possible.
During their visits patients will also complete a series of
questionnaires looking at different aspects of their disease. One of
the aims of the questionnaire is to establish the natural history of
the two different conditions and identify ways to diagnose each more
quickly and accurately.
This trial is being funded by a grant from the European Union and
hopes to include 800 patients from three countries (France, Germany
and the UK). Professor Nigel Leigh, at Kings College Hospital, is
coordinating this trial which will be running in several areas of the
UK.
If you are interested in knowing more about the study you can contact
Nigel Leigh or his Research Nurse Caroline Murphy on 020 7848 5172.
Right now I have some moderator privileges on the shydrager list so I
can see every email address subscribed. I can also see the following
information if people have it filled in:
Ralph E. Haarer
Data Processing Manager
Ralph E. Haarer, 72, who retired in 1993 after 11 years as a manager in the data processing department of Smelkinson-Sysco Inc. in Jessup, died Jan. 20 at his home in Columbia. He had Shy-Drager syndrome, a neurological disorder.
Before joining Smelkinson-Sysco, he did similar work for household supplies manufacturer Roper Eastern Corp. in Columbia and Roper Corp. in Illinois.
Mr. Haarer, who had lived in Columbia since 1969, was born in Kankakee, Ill., where in his youth he was a vocalist and trumpet player in two bands.
He served in the Army in Japan during the Korean War.
He was a charter member and past president of the Data Processing Management Association.
He also was an avid tennis player and amateur photographer.
His first wife, Jeannine M. Haarer, died in 1976.
Survivors include his wife, Elida Haarer of Columbia; nine children from his first marriage; two stepchildren; his mother, Freda M. Olesinski of Kankakee; 27 grandchildren; and a great-grandson.
George Herman Vergine
Cryptanalyst
Hi Pat,
You don't have to change the email address if you don't want to because the old
one shydrager@egroups.com is being forwarded for us automatically. If you'd
like to update your address book though the new address is
Thank you to everyone who responded to my question about where to buy some
pants to fit! I know that doesn't sound like a big problem but believe me it
was! Thanks Danielle and John for recommending "BigDog". Bill, thanks for
helping me to find the handicapped sites. Barb, I have been to one Kmart
today and am going to another one. Judy, I ordered some of the townsend
pants from Penney's and they will be here Friday. You even had the item
number! Thank you!
John, I chuckled when I read your "SIGH"
Jean (Phoenix)
where we had to scrape
ice off the car
windows this morning
Diane, My mother Joyce (71, died 11/00) had occasional breathing issues. I
would, for instance, hear her breathing while I talked with her on phone.
But in her case, she sounded as though she was out of breath. She had it
checked out by her primary and her MDS and no one ever explained it. As
always, don't automatically assume this is an MSA problem. Debbie
Hi Tom,
The only contact numbers I have for Vanderbilt are:
Dr. David Robertson
Phone: 615-343-6499
Fax: 615-343-8649
Someone at his office should be able to help with your questions.
Good luck,
Pam
nope
Att23537.jpg
Needless to say we are still in shock after receiving the news on
12-27-00 that my husband who is 54 years old has MSA. For the past
month every extra moment has been spent researching anything on MSA.
Presently, my husband is experiencing LOUD breathing. He doesn't seem
to be out of breath or having any respiratory problems just this LOUD
LOUD breathing. Has anyone else experienced this?
Also, we are trying to find a MSA support group in Central Illinois.
Does anyone have any information?
Debbie,
I got your email but I'm having trouble sending you a
reply. It keeps getting returned. Are you having email
problems today? Let me know!
Melanie
It used to be:
http://www.egroups.com/group/shydrager
Now it's:
My husband, Ralph, had a very strange reaction to anesthesia.
As long as it was active in his body he could speak plainly and loudly.
Even the medication they gave him via the machine at his bed side worked
the same way. When it was stopped he was helpless.
I do not know why but it is on his medical records. Noted by nurses.
Barb
Annette,
I checked and it shows you as subscribed to the Digest version. You should still be receiving the digests to your AOL mailbox as usual with no changes required by you. Are you not still getting digests? If you are getting them and can't open and read them you'll need to ask more questions so we can try to help you.
If you are asking about reading mail from the website that's different and yes you need to do something.
I hope we never forget that part of history.
Barb
Can you provide the phone/FAX number for the Vanderbilt MSA surgery/
anesthesia contact? Need ASAP or before.
Tom (son of) Louise Jandebeur
Pam,
I'm writing for my mother (Louise Jandebeur) to inquire regarding anesthesia
for the MSA patient.
For a year now, my father (Fred Jandebeur, an MSA patient) has had an open
wound, now about 3 inches in diameter and 1 1/2 inches deep, on his right
hip. Anticipating that a next step to try to close the wound may be surgery,
we are concerned for his being able to tolerate anesthesia. Any advice?
Tom Jandebeur
Hi Becky,
These were the only doctors I could see from California who specialize
in MSA or autonomic. Who is the woman you know from San Jose?
Hugs,.
Pam
Dr. Vincent DeQuattro
2250 Alcazar Street
CSC 166
Los Angeles, CA 90033
Phone: (323) 442-1583
Specialty: Shy-Drager Syndrome, Orthostatic
Intolerance
William P. Stuppy, M.D., F.C.A.P., F.A.C.P., F.A.C.G.
1136 W. Sixth St.
Suite 401
Los Angeles, CA 90017
Specialty: Gastroenterology; Heart rate variability
(HRV) and esophagogastric pH. GERD
(gastroesophageal reflux), IBS (Irritable Bowel
Syndrome), Panic Disorder, and PTSD.
Frisca L. Yan-Go, M.D.
Department of Neurology
UCLA
710 Westwood Plaza
Los Angeles, CA 90095
USA
Phone: 310-206-8005
Fax: 310-794-7491
E-mail: fyango@...
Multiple System Atrophy (Shy-Drager Syndrome)
Autonomic Failure (PAF, secondary Autonomic Failures)
Orthostatic Intolerance (POTS, mitral valve prolapse)
Sleep Distrubance and Autonomic Disorders
Barb,
Trey is in our prayers. I'm sure he will be fine - he has a special
guardian angel, his Granpa Ralph, watching over him.
Carol & Rob
barb My prayers are with you and your family Gert
Hi Barb,
I am so sorry about your grandson. I will pray for him and your family. please let us know how he is doing.
My thoughts are with you, Kathy T
Please pray for my grandson, Trey, who is eleven.
His mama is on the way to Cook's Children's Hospital in Ft Worth with
him. He has been ill for several days. This morning he cannot move his
legs.
Barb in Arlington
Hi Sally:
guess I did something right this time ,I got in here without any
trouble.Maybe I was just making more work for myself, then I needed
to. Story of my life.
Ok! I know I shouldn't but it got the better of me, so what did your
mother want? I know should of been a cat, but had to ask.
Got to unwind today, did a little running around, but then took Fred
to see Castaway. Good but kind of sad and then after we ate out. Got
a med-port for Freds meds, it has alarm that goes off when I need to
give him his meds. Works pretty good, went off when we were in the
show. So was able to give him his meds on time. See it's just not men
that can have toys. We women can to.
Well got to go need to take Fred b/p. Hope that you have a better day
tomorrow.Really would love to know what your mother wanted.
Hugs Vera
Greetings Tim!
Thought I don't have many of the PD issues, the hypertension, eye issues,
esophagus, etc all sound very familiar. Especially the cramping. Wakes me
out of deep sleep. Sigh. Will discuss with my neurologist during the next
visit.
Regards,
=jbf=
John B. Fisher
Hi Bill,
Thanks for the tip. We do have the home care catalog from Penny's and have
used it for several items.
Does Charlotte still take Comtan? Boy, is that stuff hard to get out when it
spurts out of the PEG. Mark has become a real pain when I put the meds in
the PEG, for some reason, he wants to take a big breath and blow it out right
as I'm putting the meds in the tube. I use a big 2 oz cath tip syringe now
but he can still blow it out if I don't hold on tight. Needless to say, I
now have big old towels that I cover him with in case of a blow out. That
orange Comtan stains like crazy.
Tell Charlotte we said "hey" take care,
Judy
Vera
Did you have to change over to get your email?? I don't understand. I
didn't change anything. Everything comes to my email add. just like it
used to. Maybe I'm missing something.
Hang in there with Fred. I know you are worn out. Boy oh boy do I
understand. We had the day from Hell at the hospital today and I get to
go back tomorrow and do it all over again. Elmer called (no one came
today), Mary called (can we go run her errands now), my mother called
(you don't want to know what she wanted), Billy is sick and has been
here since Friday night and we are solid ice right now with more coming.
I can hardly wait to see what's in store for tomorrow!!!
Hang tight, Vera. We will get through this.
Sally
Judy,
Penny's also has a sale on Twin XL sheet sets right now (hospital bed sheets). While you are at it order their "special needs catalog" TA001-6477A It's free and has lots of stuff for disabled and home care needs.
Try this site for sheets (be sure you get it all) They have Twin XL is several styles and many colors.
http://www1.jcpenney.com/jcp/navigationjava.asp?CatID=3079&cattyp=DEP&mnID=3&mscssid=2X9PPHK327A9Q8KCD0P7KDQQKT64H0KAEe82KcKCZaG0e82KcKCZaGT200B7E6C95E8991DD26E33F1A8E73AB8925CM05
Take care, Bill and Charlotte
M y mother Joyce, too, had the typical PD symptoms, though her tremor was minor. She also had internal tremors which, along with the head tilt, bothered her the most. Your symptoms set confirms just how individual this disease is. I hope you have something that works for the pain. Hang in there. Debbie
Debbie,
In addition to all the typical Parkinson's symptoms (including tremors), I have slight incontinence, hyper reflexes, difficulty swallowing, although instead of orthostatic hypotension (not yet at least!) I have hypertension. The neuro also noticed my left eye moves in an odd direction when we do the old "follow my finger" neuro exam. It was also just noted that I have little normal movement in my esophagus - whether that's related or not I do not know! I also get intense muscle pain and cramping. Something new every week lol.
Tim Foley
http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
Debbie,
In addition to all the typical Parkinson's symptoms (including tremors), I have slight incontinence, hyper reflexes, difficulty swallowing, although instead of orthostatic hypotension (not yet at least!) I have hypertension. The neuro also noticed my left eye moves in an odd direction when we do the old "follow my finger" neuro exam. It was also just noted that I have little normal movement in my esophagus - whether that's related or not I do not know! I also get intense muscle pain and cramping. Something new every week lol.
Tim Foley
http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group
Hi All,
Mark has had trouble with bowel incontinence for the last few years and we
always used Depends but now I'm buying the Publix brand at the grocery store.
They are larger and fit Mark better. I always buy the super absorbing ones
and so far they seem to keep things nice and clean. Mark wears them from
morning until night but I don't put them on him in bed. I learned at the
Mayo Clinic in Rochester from the nurses that it's much easier to clean him
up if he is laying on a bed pad at night then if he was wearing the Depends
at night. I still haven't found any better bed pad then the Depends brand.
Since Mark's stay in the hospital in December I have clean up to do every
morning when I get him up and every night when I put him to bed so I have
tons of experience. I'm also using baby wipes with aloe that I keep in one
of those baby warmers for clean up. They sure do the trick and are nice and
warm.
Hope this helps,
Take Care
Judy Whittaker
Y u might try "Blair" clothing for men.
Try calling this number:800-458-2000 ask them to send you a
clothing for men's catalog. It helped me.
later,
cindy
Hi Melanie,
My husband, Mark, is in the late stages of this disorder and also has the
head hanging to his chest. It's terribly frustrating especially now that he
has a trach. When I clean the inner cannula his head sometimes hangs over
the trach opening and he can't breath. I only clean the inner cannula now
when he is in bed so his can lay back. Even though I've tried several types
of pillows I still find him in the morning asleep with his head hanging down.
There is no "in-between" for the head, if I ask him to put his head back, it
goes to far back, he just can't hold it level like he needs to. I wish I
could help but I'm out of ideas.
Take Care,
Judy Whittaker
HI Jean,
I had that same problem for my husband, Mark. He has gone from a size 34
waist pants to his current 44 and that's with a full elastic waistband. I
finally found pants that we just love in the Penney's catalog. I just
ordered him two more pair last week. They are the Towncraft elastic waist
sport pants on page 408 of the new Spring and Summer 2001 catalog. I ordered
mine of the web site and the item number is A9572348Z those come in 30-44
waist with inseams of 30, 32, and 34. They also have the same pants in big
waists 46-60 with inseams of 29-34 or unfinished at 36.
The colors are navy, black, white, khaki, stone, chambray and denim. Mark
has all the colors except white (too messy to wear white). They wash and
wear great and are the only pants I will put on Mark these days. The regular
waists are only $19.99 and the big waists are $29.00.
Hope this helps,
Take Care,
Judy Whittaker
What is Baclofen? Please fill me in. Thanks!
Melanie in OK
PA M JUST READ BILLS LETTEER ON CHALOTTE HAVE YOU THE LIST OF MOVEMENT
SPECIALISTS HERE IN CALIF. THERE IS A WOMAN SPECIALIST WHO DEALS WITH
MOSTLY MSA IN SAN JOSE. BECKY
Thank you for your advice. We are working on the problem. I do appreciate your ideas. Marilyn
Debbie,
Your mother was such a pretty lady.
Her condition sounds a lot like my dad's. He doesn't
have major BP problems, although his BP is erratic.
I was so shocked by the picture. My father looks
*exactly* like that when he's standing and wearing his
brace. If she hadn't had the brace on in that picture,
would she have been looking at the floor? That's how
my dad is.
Did she ever try Baclofen? (I think Bill mentioned
that med.) I don't know anything about it, but I'll
check into it.
Thanks so much for your patience with all my
questions. Your mom's condition sounds so close to
what my dad is experiencing and I'm learning a lot
from you. :-)
Melanie in OK
Bill,
I have learned much from you. I should have thought to research the internet. I will do so. Thank you for your knowledge.
Marilyn in TN
This is also a problem for us for my husband. We have trouble getting them
large enough, but not too heavy to be able to get them up. We have trouble
getting pullover shirts over his head, but more trouble buttoning regular
shirts. We have trouble with buttons/buttonholes, hooks, snaps,etc. If you
find good sources, please share with us.
Marilyn in TN
Thank you. I will be very grateful for your help. Marilyn
In a message dated 1/29/01 2:37:09 PM, bwetzel@... writes:
<<
1. Initially I would like members to respond to this note indicating
if there are any objections to making our membership list accessible.
+++As long as I can have control over what can be viewed by others, I think
this would be a good idea.
2. If there are no major objections and even some support, I would ask
the moderator to make the change.
+++I think it would be helpful to be able to view and search the membership
list.
I AGREE BECKY
My mother Joyce, too, lost a lot of weight and she constantly ate. She would
eat both meals and sweets all day. No one as overly concerned about it. She
shrunk so much in general. Debbie
Hi all,
In a message dated 1/29/01 10:53:24 AM, mjwb1@... writes:
<<
My dad has similar problems. I know my mother buys him
some type of Depends product, but I'm not sure which
one. It's a type of "pull-up" brief, that looks like
disposable underwear. I know they're difficult to find
b/c every time they come over to visit us, we go to
every drugstore in town looking for them, and she
always buys many packages when she finds them. Next
time I talk to her, I'll get the specific style for
you.
name of store ???? becky
My mom did lose about that much weight in the first year or so after
her diagnosis. The doctors watched but were not alarmed as she was
slightly over her optimum weight anyway. She leveled out and now just
maintains now.
I do think there is something funky happening. Before she was very
careful about sweets and struggled to keep her weight from climbing.
Now she eats whatever she feels like eating, whenever she feels like
eating it, including sweets and treats, but doesn't have to worry
about the weight. It was a funny result of her diagnosis that
suddenly THE RULES we had always lived by didn't seem to matter at
all. If we get a hankering for cinnamon roles at 11:00 am, then we
just eat them without regard to 'spoiling our appetite before lunch'
or to how many servings from the food pyramid we have had for the day.
In a curious way it has been very freeing.
Back to the weight issue, she does have difficulty with eating due to
incoordination of her hands. It requires a lot of deliberate
concentration for her to get food onto her fork and spoon and then up
to her mouth, so my guess is that she consumes less at mealtime.
Anyway, we never knew why she started losing or why she stabalized.
Just one more unanswered question...
PW
Hi Pam,
I recieved that email. I am so glad that I didn't open the attachment. I usually don't unless I know the person sending it.
Thanks Kathy
We have had a very hard time finding pants to fit my dad that are
comfortable and big enough around the waist. My mom keeps thinking maternity
pants would be the answer! Has anyone found anything that works? Does
anyone know of a catalogue of clothing for disabled?
Jean (phx)
I'm curious, what is it that you are doing when you find it handy?
That is, is it something someone other than the moderator would do?
I'd like to know if there is some way to suppress the display of the
username portion of my email addresss. Right now, the domain part is
cut off and that really doesn't help much for privacy. Once a spammer
has my username they can add it to their dictionary for dictionary
attacks. Then send spam to dscaprette@...,
dscaprette@..., dscaprette@... etc and some of those
will get through.
I'm happy to make things easier for the real members on the mailing
list but I don't want to help spammers out at all.
So the purpose of this note is twofold:
1. Initially I would like members to respond to this note indicating
if there are any objections to making our membership list accessible.
+++As long as I can have control over what can be viewed by others, I think this
would be a good idea.
2. If there are no major objections and even some support, I would ask
the moderator to make the change.
+++I think it would be helpful to be able to view and search the membership
list.
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
Hi. I'm a member of this site and I also moderate a different
egroups site (for former members of a company I used to belong to.)
Unlike my other site, this Shy-Drager egroup does not allow us to view
our membership list.
On my other site I find it really handy to be able to view and
search the membership list. And members who seek more privacy have
lots of control over what is viewed by limiting what they put in their
"profile."
So the purpose of this note is twofold:
1. Initially I would like members to respond to this note indicating
if there are any objections to making our membership list accessible.
2. If there are no major objections and even some support, I would ask
the moderator to make the change.
Thanks much. Take care.
We have just gotten mom set up with a talking email program. It is
set so that it will check to see if she has new mail and then read the
messages to her. This has freed mom from struggling with her
trackball to read her messages.
The program was $19.95, and we downloaded it from the net. The
settings can be changed to show or not show the text in a speech
bubble, to have different speed and pitch of voice, to have one of
several characters do the reading, etc. It also has a time
announcement function that can be set for any increment you want as
well as designating some of the message. (I have it on my office pc
and it pops up and says, "Holy Smoke! It's already 3:30 pm" or
whatever time it is.
You can use the program for a free trial for 30 days to see if it
suites your needs. One down side is that it cannot interface with
Hi gang,
There have been several questions in the past about how to accomplish
raising the head of the bed. We haven't needed to do it yet, but
I've been wondering how to accomplish it in a was that is sturdy
enough for a king size bed. I recently came across a neat product
called "bed risers" in a catalog. The online catalog is
www.vermontcountrystore.com, and the bed risers are under the "home"
tab, under the sub-catogory of "bedding solutions" For a $16.95 you
get 4 (of course we would only want 2) and it looks like they raise
the bed just the right amount, and are sturdy.
Carol & Rob
Melanie. Boy does this sound familiar. And it is precisely because of this
type of question that I am still here although my mother Joyce (71) died
Nov. 2000. I will share her story.
My mother had the SND form of MSA and had the same severe head flex you are
talking about. We suspected for a long time that it was primarily due to a
terrible fall she took in a shower stall, where she hit her head. It was
about 2 weeks after that fall that the head flex progressed so severely. But
now I wonder whether it was just part of the disease (perhaps ac