Re:Vera???Louise

2008-11-30 23:52:32

Finelly a answer to your question. Sorry I didn't get to it sooner.
The glutter's had nothing to do with the Tam's and the w/c. Fred just
had a loooong list of things he wanted done around here, and one
didn't have anything to do with the other. I think things are going
to slow down here now. Our Pastor came over and talked to Fred about
making a list of things that needs to be done and then the men from
church will come and do them for him.Thank you God.
Hope you didn't get to much rain, I think we got all the sunshine
here in California that your looking for, but then we need it because
we don't have power.Hear we may have to turn our clocks up two hrs on
the 1st, to cut back on the lights. So if there is a long pause
between writing's ,it because we had a black out.
Spring is here
Yes!
Vera

RE:Too rush to notice changes?

2008-11-30 20:55:16

Besty:
It's sad but there are so many changes with this illness. One day
Fred was talking about his retirement, I would laugh because I knew
he would never retire, because as we all know so well, he loves to
work. He got his retirement only because this illness forced it on
him. I've seen the changes in the last four years, there have been
many and I know that there will be more. I hope like you that I can
be strong and hold up to what life has for us now. Sometimes it's
very hard.I don't know what tomorrow has, only hope for the best and
know that other's here understand.
I hope that will be a help to you also.
Always Vera

Re: [MSA] Dementia & agressive behavior.

2008-11-30 08:45:46

Please contact your family physician and let him know what is going on
before someone gets hurt.
My husband was like your dad for a while. There is medication. But you
HAVE TO TELL THE DOCTOR.
DO NOT WAIT!!!!!
Barb in Arlington. Texas

Re: [MSA] Walkers

2008-11-30 08:43:54

We purchased a walker with basket and seat from a local provider. It was manufactired by Duracare, item #016628. It has large wheels, brakes, front wheels that swivel, etc. There were several styles, ut we opted for the heavy duty. It has been helpful for my husband. Medicare does not cover.
Marilyn in TN

Dementia & agressive behavior.

2008-11-30 03:09:22

My dad, Paul, is 69 and has MSA. He has been deteriorating the last two
years. Currently he is still home being cared for primarily by my mom. He
has dementia daily, although not all day. Recently he has shown very
aggressive behavior toward my mom, he accuses her of things that just aren't
possible. He has grabbed her arms and hands and squeezed until it leaves
bruises. This is not the dad that I have ever known, he has always been a
kind, considerate, gentle man. I don't understand how this disease can cause
someone like my dad to do and say the things that we are experiencing now.
Is this unique to him or is it something others have experienced?
It breaks my heart to see this happen to two people who have been married 49
years. I think it may be time to find a nursing home for dad because, in my
opinion, it is to much for mom to handle now. I'm terrified at the thought
of a nursing home. How do I find a facility that can deal with the symptoms
of MSA? We are with dad at all times and I know he won't have that kind of
care in a nursing home. I need guidance to help me proceed from here. Mom
looks to me for support and I want to provide them with the best, I just
don't know what it is. Please help.
Rin Wroblewski
Avon, Indiana

Re: [MSA] My Husband's (Peter) GP visit/Sinamet

2008-11-29 17:39:13

Patricia,
I may be wrong here (and someone please correct me if
I am), but I thought that a certain percentage of MSA
patients respond to Sinamet. Therefore, a dx of MSA
can't be ruled out just because Sinamet is effective
for a patient. My father gets some benefit from
Sinamet, although not as much as most people with PD.
I don't mean to sound negative. I certainly hope that
your husband's dx is PD. I just thought you should be
aware.
Melanie in OK

Re: [MSA] A Word to Melanie/Patricia

2008-11-29 09:24:59

Hi Patricia,
Thanks so much for missing me! :-) My boys are on
Spring Break this week and they're keeping me busy.
My dad will be 69 in July. I really have no idea of
what stage he is in. I can't really get a handle on
"staging", b/c MSA seems to treat everyone so
differently. I do know that he is much worse than he
was this time last year when we thought his dx was PD.
He seems to have gone downhill fast since about
October or November. He has had a rough week this
week...hasn't felt good all week. He seems to have
more bad days than good days now. :-( I hate that for
him and my mom. I hate it for me, too, but I try not
to feel too sorry for myself. He's the one suffering.
Remind me again of what symptoms your husband has. Has
he been to a movement disorder specialist yet?
Thanks again for asking about me. :-)
Melanie in OK

What am I thankful for?

2008-11-29 02:58:37

I AM THANKFUL . . .
FOR THE HUSBAND WHO COMPLAINS WHEN HIS DINNER IS NOT
ON TIME, BECAUSE HE IS HOME WITH ME, NOT WITH SOMEONE
ELSE.
FOR THE TEENAGER WHO IS COMPLAINING ABOUT DOING
DISHES, BECAUSE THAT MEANS SHE IS AT HOME & NOT ON THE
STREETS.
FOR THE TAXES THAT I PAY, BECAUSE IT MEANS THAT I AM
EMPLOYED.
FOR THE MESS TO CLEAN AFTER A PARTY, BECAUSE IT MEANS
THAT I HAVE BEEN SURROUNDED BY FRIENDS.
FOR THE CLOTHES THAT FIT A LITTLE TOO SNUG, BECAUSE IT
MEANS I HAVE ENOUGH TO EAT.
FOR MY SHADOW THAT WATCHES ME WORK, BECAUSE IT MEANS I AM
OUT IN THE SUNSHINE.
FOR A LAWN THAT NEEDS MOWING, WINDOWS THAT NEED CLEANING,
AND GUTTERS THAT NEED FIXING, BECAUSE IT MEANS THAT I HAVE A HOME.
FOR ALL THE COMPLAINING I HEAR ABOUT THE GOVERNMENT,
BECAUSE IT MEANS THAT WE HAVE FREEDOM OF SPEECH.
FOR THE PARKING SPOT I FIND AT THE FAR END OF THE PARKING
LOT, BECAUSE IT MEANS I AM CAPABLE OF WALKING AND THAT I HAVE BEEN
BLESSED WITH TRANSPORTATION
FOR MY HUGE HEATING BILL, BECAUSE IT MEANS I AM WARM.
FOR THE LADY BEHIND ME IN CHURCH THAT SINGS OFF KEY,
BECAUSE IT MEANS THAT I CAN HEAR
FOR THE PILE OF LAUNDRY AND IRONING, BECAUSE IT MEANS I
HAVE CLOTHES TO WEAR
FOR WEARINESS AND ACHING MUSCLES AT THE END OF THE DAY,
BECAUSE IT MEANS I HAVE BEEN CAPABLE OF WORKING HARD
FOR THE ALARM THAT GOES OFF IN THE EARLY MORNING HOURS, BECAUSE IT
MEANS THAT I AM ALIVE,
AND FINALLY.......FOR TOO MUCH E-MAIL, BECAUSE IT MEANS I
HAVE FRIENDS WHO ARE THINKING OF ME.
SEND THIS TO SOMEONE YOU CARE ABOUT . . . I JUST DID.

A Word to Melanie

2008-11-29 02:48:56

[INLINE]
Hello Melanie. I haven't seen much from you on the message board today. Just wanted to check and make sure you're ok. How old is your Dad by the way? Do you have any idea what stage of this condition he is in? Are there in fact stages to this? My questions seem endless don't they. You have all been such a help. I don't feel alone anymore. Thank you.
Patricia
[INLINE]

[INLINE]

Mary in Michigan

2008-11-28 22:16:18

So sorry to hear about you Mom, just know that you and your dear father
did all that you could do.
Our prayers and thoughts for with you and your family. I am 3 day behind
in my mail sorry for the delay.
God Bless
Ann from Soddy, TN

Reminder - SUPPORT GROUP MEETING: Minneapolis/St.Pa...

2008-11-28 13:14:42

We would like to remind you of this upcoming event.
SUPPORT GROUP MEETING: Minneapolis/St.Paul Area
Date: Thursday, April 12, 2001
Time: All Day
This group meets the second
Thursday of each month with
a speaker usually every other month.
For more information call Ginny at 952-953-0505
email: vober123@...
or call
Pauline at 651-552-8624

Re: [MSA] PET scans

2008-11-28 08:58:24

Hi all,

Remember too that PET scans are not 100%. They can not always tell the difference between say MSA and PSP; or PSP and CBGD. If you pay $3000 for a PET scan and it tells you that you have MSA or PSP - what good does that do you? I can think of better ways to spend $3000.

Take care, Bill and Charlotte

Mary - Low Potassium levels causes leg cramps!!!

2008-11-27 19:49:33

Mary,

I just wanted to make sure everyone did not run out and start giving that much supplement without proper tests. Anytime you severely alter diet you need to check blood chemistry.

Take care, Bill and Charlotte

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

My Husband's (Peter) GP visit

2008-11-27 18:50:37

Hi folks. just a quick note to all of you who have been so kind
responding to my emails. We went to the GP yesterday. She was
reluctant to believe Peter might have a UTI or some such thing but
did agree a urinalysis would not put too much strain on the health
care system. We got it done yesterday. No results yet. I would
never have known to ask if it hadn't been for Bill and Charlotte's
advice. There's so much I don't know, this board is an education in
itself and I also have visited Charmayne's website as someone
suggested. I'm learning so much. Peter's GP also agreed to book him
for his heart scan at anther hospital so the neurologist can start
him on Sinemet, provided his heart checks out, as soon as possible.
I gather from the neuro this is sort of the acid test. If the
Sinemet works he will give a diagnosis of Parkinson's Disease, if
not, the diagnosis will be SND. I have been very interested to read
about the voice and speech therapy available. I find it really hard
to understand Peter now, his voice has lost so much volume. I'm sure
it frustrates him too. Also, the eye thing has been an issue with
him as has the rigidity and the painful neck. What an education this
has been. Once again, thanks to all of you, Melanie, Bill &
Charlotte, Mr. Fisher and others. You are all wonderful
Patricia (not feeling so alone now)

Re: [MSA] Fw: Sen. Tom Haywood Article

2008-11-27 12:05:28

Tricia: Mary again - - Just read your letter to Ms. Grisales. May I
applaud your initiative on behalf of all of us who are involved with MSA?

know anyone who can relate to these? ;-]

2008-11-27 04:49:52

Babyboomers can you relate??
1970: Long Hair
2000: Longing for hair
1970: The perfect high
2000: The perfect high-yield mutual fund
1970: KEG
2000: EKG
1970: Acid Rock
2000: Acid Reflux
1970: Moving to California because it's cool
2000: Moving to California because it's warm
1970: Growing pot
2000: Growing pot belly
1970: Watching John Glenn's historic flight with your parents
2000: Watching John Glenn's historic flight with your children
1970: Trying to look like Marlon Brando or Elizabeth Taylor
2000: Trying NOT to look like Marlon Brando or Elizabeth Taylor
1970: Seeds and stems
2000: Roughage
1970: Our president's struggle with Fidel
2000: Our president's struggle with fidelity
1970: Paar
2000: AARP
1970: Killer weed
2000: Weed killer
1970: Hoping for a BMW
2000: Hoping for a BM
1970: The Grateful Dead
2000: Dr. Kevorkian
1970: Getting out to a new, hip joint
2000: Getting a new hip joint
1970: Rolling Stones
2000: Kidney stones
1970: Being called into the principal's office
2000: Calling the principal's office
1970: Peace sign
2000: Mercedes logo
1970: Parents begging you to get your hair cut
2000: Children begging you to get their heads shaved
1970: Take acid
2000: Take antacid
1970: Passing the driver's test
2000: Passing the vision test
1970: "Whatever"
2000: "Depends"

RE: [MSA] Too Rushed To Notice Changes ?

2008-11-26 19:50:55

Betsy,
Your message is one that all of us who have a family member
with MSA understand without any need for the words to be
written. I see the same feelings you express in the face
of my sister-in-law each time I am with her and my brother.
She looks so bewildered that this disease has visited
their lives and I know that in a way different than the
uncertain future he faces, she also has also had her future
taken hostage by this disease. As the brother of someone
with MSA, I can go home to my family and resume my normal
day-to-day life. However, I know that like you and your
husband, they both have this challenge before them every
day, 24/7. That's why our familiy is trying to help and
encourage both of them as much as possible. I hope you
and Charlie have family members who can and will do the
same for you.
Jerry Cash

Mary - Low Potassium levels causes leg cramps!!!

2008-11-26 18:17:00

Bill and Charlotte: I know you mean well but your reply to mag/phos assumes
that "we" have not actively explored many alternatives. This "complimentary"
remedy was approved by an Internist and an Neurologist and is monitored daily
by a team of nurses. My husband was in the medical profession and is very
astute re his body and its responses - he calls the shots and reviews them
actively and intelligently. My response re leg cramps was in no way
intended as a cure all for anyone with MSA - each individual response is
unique. It was and is intended to be an option to be checked out. Some
physicians are more open to complimentary medicine than others - fortunately
ours are.
I wish you and Charlotte we - Mary

A simple Thanks

2008-11-26 09:46:55

Hi Folks:
Just a simple thanks to everyone for answering my questions that I am
always asking. I thank God that you people are there for helping us
out.
Earl

Barb in Arlington, Vera, Projects Pending?

2008-11-26 04:37:02

SLEET for two days in Springhill! Jan is no longer capable of sitting in chairs and either the van must be converted to an ambulance stretcher or we'll have to forget office and hospital doctors. Bad week , but fortunately I got to my four hour--stretched to five--dental appointment before ancient caps initiated infection and my demise. How I wish for sun and warm weather. LA Louise gearing up for 2-3 inches of rain just today and waiting for shower and walkway show and tell.

Re: What is a "spec" scan?

2008-11-26 01:35:19

Perry
Sorry a better address is simply http://www.parkinson.org, search
SPECT, Parkinson Report, Winter 1999, Volxx
Steve

Re: What is a "spec" scan?

2008-11-25 17:45:23

Perry
Check out http://www.parkinson.org/index.htm, search under SPECT, the
Parkinson Report, Winter of 1999, volXX. I am part of a study at The
University of Penna using SPECT, that will help with diagnosis and
monitor progression of Parkinson's and other movement disorders such
as MSA.
Steve Crawford

What is a "spec" scan?

2008-11-25 09:14:11

In Terry's visit last week to her neurologist at the University of Virginia
hospital, he said he was considering having a "spec" scan done. I asked
what it was and he said it is similar to a PET scan - i.e.metabolic
activity scanning of brain - but easier to do. I am not sure I spelled the
"spec" name correctly as I did not ask
The impetus for this scan was we feel Terry may be losing some cognitive
abilities. He has ordered some cognitive skills tests which he will use to
determine the purpose of the spec scan.
Does anyone have any info on what this spec scan might be?
Perry Sennewald 804-244-0018

Re diabetes and MSA

2008-11-25 07:03:06

Debbie: I can tell you that Terry is MSA/SND and diabetic type II. There
is reason to believe the diabetes is due to a long history of being
overweight and her dad had it as well. I believe diabetes has some genetic
characteristics.
Perry Sennewald 804-244-0018

Walkers

2008-11-24 18:28:48

Hi,

Does anyone have any particular recommendations for walkers. Personally, from watching people, I think one that has a seat in it would be helpful for when one gets tired easy and I do. Any thoughts, or links to look at?

Tricia Jensen

Glendale, California

pajensen@...

Re: [MSA] UTI's

2008-11-24 15:41:13

Our doctor had us purcahse the test strips and taught us how to use them.
So every few days, we check things out and call him if we have positive
results. Your doctor might be willing to help you.
Marilyn in TN

Marilyn in TN - Graphics - Tell us how.

2008-11-24 15:16:24

Hi Marilyn,
I enjoy dabbling in computer graphics. I make my own cards, stationary, bookmarks, magnets, address labels, notepads, etc.
I collect the graphics from various sources - CD's & online.
Then I usually take them into Paint Shop Pro - a program by Jasc (30 day trial download available at http://www.jasc.com/download_4.asp - &/or Print Artist & alter them to my liking.
Here are some good places to collect graphics if you are interested:
* http://newzgroups.net/mynews/ - alt.binaries.clip-art

Too Rushed To Notice Changes ?

2008-11-24 00:45:58

My husband Charlie has MSA.It was no surprise to us the seriousness of
his medical problem once diagnosed last month at the Cleveland Clinic.
The drastic turn of events that has turned our world inside out has a
horrible way of demanding time and energies.I truly love my husband
and he has handled this with great strength.Today when I got home from
work as we sat at the dinner table I wondered where I've have been.I
have become so accustomed to the effects of this disease on him that I
have blinded myself to the progression that it has made in the last
few weeks.I could hardly understand his speech this evening , his
overall strength is rapidly failing.I found myself watching him
closely and studying every move he made.I have come to the conclusion
that in order to deal with all that is ahead in our lives that in some
way we deal with the present and have knowledge of the future but also
harden ourself to the reality. As many of you know we are fortunate to
have loving family and friends.But the struggle of giving the one you
love to this disease is one that each of us deal with diferently.We
take each day as a blessing and so much enjoy our time together.I hope
that I am not protecting myself in a way that one day in the future I
will lose the strenght that I will so desperately need.I have been a
caregiver in the past to my mother and younger brother dying is a part
of life and I have shared this type of committment before.This group
has given me a release and hope that all of us share. Betsy

Re: Betsy

2008-11-23 20:18:20

- Ann , Thank you for your reply.It is a strange relief to read about
so many problems that my husband Charlie has dealt with the last two
years.I am drawn to read postings each evening.I hope I am not wrong
to keep a lot of the information to myself and not share with Charlie.
These past few months have been so emotional with all the info we have
had to digest. Thank you for your friendship... Betsy

Books on Tape

2008-11-23 18:44:46

I love Books on Tape ... encourage all to ck their libraries ...mine is
really good about selection ... listen -. even if you sit in the car to
listen to them ;-]
has made my life more tolerable
sheila

MSA & Diabetes

2008-11-23 13:52:33

Here's an article that shows how the autonomic nervous system controls blood
sugar. Failure in this system might result in diabetes.
http://www.britannica.com/bcom/eb/article/7/0,5716,119947+6+110704,00.html
Unfortunately, it appears that diabetes can cause failure of the autonomic
nervous system. So, sorting it out can be difficult.
Hope this helps.
Regards,
=jbf=
John B. Fisher

MSA & the Eyes

2008-11-23 02:45:33

There have been several requests about how MSA impacts the eyes. The
following article may help:
http://www.britannica.com/bcom/eb/article/7/0,5716,119947+2+110704,00.html
It explains how the autonomic nervous system controls the eyes.
Regards,
=jbf=
John B. Fisher

Re: [MSA] To Mary

2008-11-22 19:16:30

John and I want to say how sorry we are to hear about the passing of your
mother. Know that she is in a better place and free from this awful disease.
Our prayers are with you...... John & Donna in Abilene, Tx.

Re: [MSA] Diabetes-Earll

2008-11-22 18:20:35

Hi Earl,

Dave was diagnosed with diabetes eleven years ago. As a matter of fact, right after the dx, he started having the violent dreams and I thought it was related to diabetes. He also has a lot of shoulder and arm pain. I think it is MSA related.

Hope Iris gets to feeling better and you take care of your self.

Kathy

RE: [MSA] MRIs vs. PET scans

2008-11-22 10:09:49

Nancy, My understanding is that PET scans are far more expensive (I think
around $3,000 or is it $5,000??). Also, there are not that many PET scanning
devices in the world, whereas MRIs are all over. I tried to get insurance to
cover a PET scan for my mother Joyce (was in the process of doing this when
she died) but the requirements are strict. You cannot use it for diagnostic
purposes -- which is really too bad because short of an autopsy, it's the
only tool I know that can provide an MSA diagnosis. Debbie

RE: [MSA] Emergency Alerting - An Update

2008-11-22 01:54:23

Perry, Compiling the information like this to present it to the list will
save others a lot of time and effort. Thanks, Debbie

Re: [MSA] MRI vs PET Scan Costs - nancy m.

2008-11-21 18:43:32

Greetings Nancy!
You wondered:
Yes. As I understand it, it is very expensive (much more than an MRI ...
thank you, mass production ... MRIs were once much more expensive). Due to
the cost, most doctors will not prescribe PET scans unless they are certain
it will provide needed information.
Regards,
=jbf=
John B. Fisher

Emergency Alerting - An Update

2008-11-21 17:34:51

A few weeks back I asked for comments on Emergency Call Devices. I
received several responses including ones from Bill Werre and Debbie White.
I have also done some local homework. Here is a summary of what I have
learned for those who are interested.
ONE THING TO CHECK independent of how you decide to provide Emergency
Alerting:
Call 911 and make sure they have accurate information on your address. I
found that my phone number in 911's data base showed my number as
disconnected and therefore provided no street address. 911 personnel can
still get your address by calling the phone company around the clock but it
represents a needless delay. I suggest you check your local 911 service to
be sure the data they have on you is accurate.
In all of these approaches to emergency alerting, the client wears a
"medical pendant" with a button activated by the presumably conscious
client. If the client is unconscious as a result of falling, you have a
big problem! There are no solutions I know of for this situation short of
the physical presence of a care giver to call 911.
There are two basic approaches: Hardware or Service. In both, it is
desirable for the care giver to have a cell phone to be worn at all times
when the caregiver is away from the patient.
EMERGENCY ALERTING In the hardware approach you buy a black box and a
"medical pendant" from Radio Shack or on-line from smarthome.com. The
medical pendant relays a signal to the base station by radio frequency with
a 100 foot range, which then calls the monitoring service. Then, you
program the several phone numbers, with 911 last, you want called in an
emergency. The battery operated pendant is worn by the client and has one,
or two, buttons to be actuated by the client. The black box is AC powered
possibly with a battery backup. Cost is around $100 give or take. If this
approach doesn't result in calling the appropriate party, all you have to
do is look in the mirror to find the responsible party. Also, you have no
rapport with the folks who are doing the dispatching.
EMERGENCY ALERTING With the Service approach, you have two possibilities:
National or Local. In the former, there is a service in Nashua, NH called
Colonial Medical Alert on 800-323-6794, ask for Donna. [There may be other
national services like Colonial.] They charge $25 per month and I believe
there is no install charge. They seemed quite knowledgeable and competent.
However, I was not comfortable with dealing long distance with someone
with the responsibility for ultimately calling my local 911 from a distant
location. Colonial did have one nice feature: They will sell you a lock
box with a combination lock on it for your house key to avoid the emergency
folks from having to break your door down to gain entry.
There is a another national approach using security alarm companies, e.g.
ADT. They are not health oriented and only offer a series of phone calls
which they will make but without ANY direct voice communications to the
fallen client. They can call the client by phone and this would help if
the client is able to answer the phone. If the client can answer the
phone, they could call 911 themselves! I already have the ADT service;
however, they don't seem to have the same health orientation that the local
service has.
In the local approach, both of our local hospitals offer a emergency
alerting service. The larger one contracts it out to the folks in NH. The
smaller hospital buys the black boxes and pendants and installs and
maintains them for you for a monthly fee of $35. The calls are received by
the personnel at the hospital switchboard where a minimum of three people
are always on duty. These folks receive your alerting signal and bring up
your data base on a PC screen. Using this information, they contact the
client by two way voice communications via the previously installed black
box. If the client is able to communicate, the person receiving the
alerting signal makes a decision on what to do next based on their
judgement and your previously provided instructions. They also have
information on your health, medications, etc. In our area, they monitor
over 500 clients. I found their personnel to be extremely sensitive to the
unique needs of clients requiring alerting services. They do not require
a long term commitment, but do require a release of any responsibility.
I also spoke to the Director of Operations for the local emergency rescue
service. The main thing I learned from him was an implicit preference for
the locally run service. Clearly, he could not make any recommendations.
One warning: With MSA patients, you frequently have depressed speech
volume. In our case we found this limited the range to about ten feet as
her voice is very soft. they could pick up my voice for 60 feet. If they
can't hear you speak or make some loud noise, a call goes to 911. Our
monitoring service has been forewarned about the soft voice.
My Bottom Line: Terry and myself decided on the locally operated service
even with the limited voice pickup range as there seems to be no other
alternative and there is no time committment for the service, just the
montly fee.
Perry Sennewald 804-244-0018

Diabetes

2008-11-21 10:52:20

Hi, This is Earl:
Iris is now being checked for diabetes. Is this connected with MSA.
I ask you folks. because you help me so much. She haveing pain in her
neck, shoulders, arms and legs. Is this all because of this. Thanks
for
all of you input. You keep me going with your help.
Earl

Thank you from Dawn!

2008-11-21 03:46:12

A thank you to everyone for your thoughts about urinary incontinence. Today we
are working on some of your ideas. For example, Celeste needs a place close to
home (the medical center that treats her is 30 minutes away in the downtown
area) where we can drop a urine specimen and have it tested for infection.
Hopefully, then when we suspect one I can just drop it off and get the diagnosis
rather than trying to figure out how to get her downtown etc.
Also we have another trick for others who are able. It only works for people who
are pretty mobile. We bought one of those small (about 3 feet in diameter) mini
trampolines. When Celeste is going out of the house somewhere and she doesn't
want to wet herself, she jumps on the tramp for a couple minutes and believe me
all the urine she has comes out in the diaper. Just going to the bathroom
doesn't work because she thinks she has emptied her bladder when she really
hasn't. This is a great little trick and will afford a couple hours of more
confidence. Also this is a way to keep yourself hydrated. Drink a lot during
the day but every couple of hours jump on the tramp and empty yourself. That
way you have some control over your messes. I know for many many people on this
list this is impossible but for some it may work. Don't know if it will work
for the men. I don't know enough about men's plumbing to say. We got the tramp
at Meijer's for like $25.00. Good luck, D!
!
awn
PS I am not as active on the list as I use to be because my home computer is on
the fritz so I have to read and send e-mails from work. I feel guilty spending
much time doing this so I try to keep it to a minimum. Someday I will get my
home computer fixed. My best to all.

Reminder - use appropriate subject line :)

2008-11-21 03:15:21

Please try to use the appropriate subject line so that those who do a quick scan of the messages do not miss something of importance to them.
I know it is quick & easy to just hit reply, but often the previous subject line is not relative to the body of the message :(
Thanx so much!
frogpocket.jpg

Fw: Sen. Tom Haywood Article

2008-11-20 22:31:13

Below is a copy of a letter which I wrote on March 20, 2001 to Ms. Grisales regarding her article regarding Sen. Tom Haywood.

Tricia Jensen

Glendale, California
pajensen@...

Re: [MSA] MSA and Bifocals and Books on Tape

2008-11-20 07:01:22

This is also a very wonderful idea. When I was recovering from my last
brain surgery, my friend brought me some books on tape. Since I could not
read or watch TV at the time, they were a big help.
Tricia Jensen
Glendale, California
pajensen@...

Vera-Barbara in Illinois

2008-11-20 06:40:43

When my first son was born, he had a very severe case of colic. He would
literally wake up at 5:30 a.m. and not stop screaming until about 9:00 p.m.
when he would finally go back to sleep. This went on for 3 months an
absolutely nothing helped. The only thing that brought any relief was to
put him in a car (in car seat) and drive, drive, drive. He liked the
vibrations and the jerking of the car and it would relax him so that he
would take a nap. He would look out the windows and slowly drift off to
sleep, and I would finally get some peace and quiet, even thought I still
had to concentrate on an activity. It was a time of peace for me also. To
this day, he if 15 and when he gets in car and the engine is turned on, he
still falls asleep. LOLOLOL
Anyway, what I am getting at is that driving is a good way for you both to
relax and enjoy the scenery. It does so much for the peace of mind. And,
fortunately, here in California, our scenery varies every few miles from
mountains to ocean to flowers, etc.
So, drive, drive, drive.......
Tricia Jensen
Glendale, California
pajensen@...

Mary - Low Potassium levels causes leg cramps!!!

2008-11-20 04:59:41

Mary,

Are you having your husbands blood chemistry checked regularly???? I don't know how much magnesium or phosphorus is in a tablet, but 12-20 tablets seems excessive. Do you realize that blood chemistry is very tricky to balance and that overloading it with one chemical can upset another chemical level. A good example of this for MSA is that overloading with sodium causes potassium levels to fall and cause things like cramping. Blood chemistry balance is very important and MSA does goof it up, so supplements may be necessary.

If you are giving your husband things that his doctor does not know about, please have the doctor check his blood chemistry. I would also ask for a refferal to a nutritionalist to see exactly how this supplement might may help or hurt the body in the long term. I don't remember exactly what all both of those chmicals do, but I seem to remember both are important in bone growth, so you may need to add calcium to balance or something like that. You also need to make sure that his sodium and potassium levels are okay, as a shortage of one of them can cause cramping and heart problems.

Normally, you should get blood chemistry done 3-4 times a year if you are taking any medicines that upset the blood chemistry. Taking over the counter supplements that could upset the blood chemistry would cause the same type of problems.

Take care, Bill and Charlotte

Re: [MSA] Low Potassium levels causes leg cramps!!!

2008-11-19 21:18:26

Also medications such as Zanaflex or Baclofen can help. My cramping did not
respond to heat. Or range of motion exercises, or ... It definitely makes
a difference. (Though this medication should be started at a low dosage and
increased ... it can cause quite obvious drowsiness).
Regards,
=jbf=
John B. Fisher

MSA and Bifocals and Books on Tape

2008-11-19 17:09:19

Hi,
Peg's most recent solution for reading problems is to order Books on Tape.
Peg has finished listening to Mark Twain's Tom Sawyer, is half way through
Main Street by Sinclair Lewis, and is waiting for Les Miserables to come
(She remembers when we saw the original musical in London years ago). The
company has a Web site http://www.booksontape.com)(Phone 800-626-3333) and
offers a discounted original order that also includes a copy of the complete
catalog. There are literally thousands of different kinds of books on tape.
Most of the material is available in audio cassettes. A standard tape
player costing less than $50 would play the cassettes. Most stereos also
have a cassette player. More recently the company has started making
material available on CD's. Such CD's can be played on a standard CD
player. If you have a DVD player they can be played on that also. Most
books rent for from ten to sixteen dollars. That charge also includes the
return mail charges. Their address is
Books on Tape
PO Box 7900
Newport Beach, CA 92658-9924
In addition most MSA patients can probably easily qualify for free matter
for the blind and visually handicapped. One company we've tracked down is
Christian Record Services
PO Box 6097
4444 South 52nd Street
Lincoln, NE 68506-0097
About 90% of their material has a religious bent. They will ship a very
large catalog at no charge. There is a fair amount of secular material
available also. They provide tapes. They also provide large print books
and a large print magazine called Lifeglow. They also appear to have a
service where people will read textbooks on tape to make them available for
blind people who are attending school. We have not tried them out yet but
they have sent us a catalog. The advantage is that there are no charges for
this material and no mail charges either. Those who want access to
religious material or a large print bible or a recorded bible should try
this location out.
Jim and Peg from Guam
has had difficulties adapting to rapid light changes; e.g. when we would
drive into a tunnel, it would take minutes before she could see.
Currently, she is having trouble reading anything with more than one
column, e.g. newspaper, as they tend to fuse together. This is not quite
the same as other examples cited, but could be related. Another example of
symptoms long ago seen, but not understood at the time.
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

RE: Vera-Barbara in Illinois

2008-11-19 11:26:14

Barbara:
You don't know how glad I am that I didn't offend you. That is one
thing that I really don't want to do to anyone on this group. You
have all been a blessing here, and I wouldn't want to hurt anyones
feeling.
I'm sure you only wanted to help and here I am feeling sorry for
myself and taking everything the wrong way. God has away of being
there when you need him, first thing this morning our Pastor called
to fine out how everything was with us. I tolded him what Fred has
been doing and how I have been feeling, so he is going to come over
to talk to Fred tomorrow, to see if he can help.
Today Fred did the walkway with the man down the street, I didn't
help at all. Then I took Fred to Riverside this afternoon and the
drive did me some good. Driving always seems to help and it was nice
to see the California poppy's on the hills going. Thursday I'm going
to go the my hair cut finelly. I've been putting it off forever. The
bang's are out of my face, but I sure did an awful job. Just hope the
hair dresser can do something with it now. Will I ever learn?
Thank"s for caring enough to give me a good kick when I needed one.
Hugs
Vera

Re: Mom died early Sunday

2008-11-19 04:45:58

Mary:
I know there isn't alot that can be said at this time to help ease
the pain of the lost of your mother. Nothing really does, but do know
that we all feel it and are so sorry that she is gone. I hope time
will help some, and that it is a little easier knowning that she will
not suffer anymore from this illness.
God bless and keep you strong at this time of your lost.
Vera

Joahn

2008-11-18 18:24:54

Hi Joahn,

Welcome to the group. Dave and I know how frustrated we were, knowing something was wrong but not being able to find out what. It got to the point that Dave wouldn't tell the doctors everything wrong because he was afraid that they would think he was making it up. Even though we were devestated by the diagnosis, we were relieved to finally find out what was happening to him and that it had a name.

This is a wonderful group with a wealth of information. If I can ever help in any help, feel free to email me.

Take care, Kathy

Mom died early Sunday

2008-11-18 10:59:37

My mom, Helen Jennings, died early yesterday (1:35 am.) She had been in the
hospital for a week following a respiratory arrest. During one week's time
she so rapidly lost her ability to swallow that she went from feeding
herself a regular diet to aspirating pureed foods. She developed an
aspiration pneumonia following insertion of a PEG tube, arrested before the
antibiotics kicked in and remained nonresponsive for the week prior to her
hospice admission. She had been admitted to the hospital for the PEG (from
the nursing home) but we all were two steps behind her medical changes.
She was 85 y/o and had dementia as well as SDS. Unfortunately the dementia
thwarted all our attempts at therapy and we never had a chance to try
speech/swallowing therapy. Until she fell at Thanksgiving, breaking her
arm, she was doing well at home w/ Dad (88y/o) as her primary caregiver and
a hired aide 3 days/week. Once that happened, she lost the ability to walk
and her decline was rapid - speeded perhaps a bit by moving to a nursing
home. Dad and I were camped out there daily but did need to leave to go
home to sleep, work, take care of kids etc. The staff there, while very
caring and attentive, wasn't as on top of things as our one on one care at
home. Too bad 24 hr. care is so difficult to arrange at home.
On the positive side, she is spared the final stages of SDS; never knew she
had the PEG tube and would not be eating orally any more. That would have
been a horrible loss for her, but she was just too alert and interactive to
have declined it. One of those situations where all the choices stunk.
My blessings to you all. This egroup was a very wonderful help to me for
the past few months. Especially knowing what was ahead for Mom helps ease
the pain of losing her. God bless you all, Mary in Michigan
PS - I had suggested forming a Michigan support group - still a good idea
but another one of you will have to carry it out.

RE: [MSA] Mom died early Sunday

2008-11-18 09:29:35

Mary, I am so, so sorry to hear about your mother Helen. My mother Joyce
(71) died, too, before the true end stages of this disease -- still, I know
she would have wanted to be here no matter what. I know how hard it is to
lose a mother. I miss mine daily and know that you, too, will carry your mom
around always. I am thinking of you and your family and of your mother
Helen.

Re: [MSA] Fw: Stem Cell Research News: Reports on the Brain andNervous System

2008-11-17 19:30:07

Thomas,
For some reason, all I am getting from you are blank emails. No text at
all.
Tricia Jensen
pajensen@...

jbf

2008-11-17 14:04:34

In a message dated 3/25/01 7:08:05 PM, mjwb1@... writes:
<<keep practicing.

Crisis Over

2008-11-17 13:57:20

Hello Everyone:
Well this crisis seems to be over. Bill's hand healed
nicely (seven stitches). It seems he should have been
put on an antibiotic right after they treated the cut
since he is on Florinef. The cellulitis infection
cleared up, but not before a respiratory infection set
in. He had to be taken off one antibiotic
(Cephalexin)and put on another (Biaxin). Biaxin made
him very weak.
Of course, I came down with a bronchial and sinus
infection at the same time. Feel a lot better today.
Missed work last week which means I have much more to
do this week. Oh, well first things first.
Thanks for the messages of support and the information
on infections. Bill has agreed to physical therapy
because he feels weaker now.
Betsy thanks for those lines on caregivers, I've made
an appointment with a geriatric care manager to see
about home help. At least for three days a week.
Let you know how that goes.
Aida and Bill in NYC

Re: [MSA] You have a National Zoo Giant Panda E-card waiting for you!

2008-11-17 07:00:39

Hi Bill and Charlotte,
Hope your day at the zoo was a fun-filled time. I love those pandas; I
think they have the cutest faces. Thanks so much for the card you sent to
all of us. Smiles and hugs, Diane'

Re: [MSA] Bleach alternatives in soap powders a good disinfectant??

2008-11-17 05:30:18

Louise,

I am surprised to hear about the heat because ,as, I remember from my microbiology classes, the temperature would have to be much higher to kill those little buggers.

If you come across that information again, I sure would like to see it.

On second thought, the combination of detergent, bleach, and heat just might do the trick. =|:)

Colorfast bleaches are germicidal also.

God Bless,

Jim Stark

Bleach alternatives in soap powders a good disinfectant??

2008-11-16 20:13:52

Yo Jim! SO glad you answered. You OK? I learned at this late date that the dryer heat is most necessary to banish germs and that the heat from the dishwasher is needed too. Still don't know about colorfast bleach alternatives in laundry soaps. About names-- no apology required. My maiden name was K L I N G E L H O E F E R. German origin, it means "little bells in the yard of the inn." As kindergarteners in a large family we children were instructed to enlighten amazed strangers on pronunciation with "cling like hell to the hay fork." Jandebeur causes confusion now. Jan is having a lot of trouble currently. LA Louise in damp cold muddy grey Springhill waiting for more rain.

Re: [MSA] Cold Tablets

2008-11-16 06:13:49

Sue,
The name of the cold medicines to avoid are: Phenylpropanolamine HCl and
Phenylephrine HCl. They both could cause your BP to sky rocket.
Ask your doctor about a drug called Guaifenesin ( comes under many brand
names). It simply waters down the mucus and hopefully unplug everything.
Of course you should be on vitamin "C". I read a paper not long ago that
said vitamin "C" at 1000 mg per day could cut a cold down to two or three
days. I am not a doctor, so, check with yours about this.
God Bless,
Jim Stark

RE: [MSA] Balance problems-Melanie

2008-11-16 04:19:59

My mother Joyce ended up in a wheelchair -- though she fought it every step
of the way.
The last fall at the beginning of last summer, which refractured her
shoulder (which was already broken from another fall) and some ribs, is what
set her back so far that she could no longer walk unassisted. So it was the
wheelchair. However, several times a day, an aide would walk her around one
level of the house -- my mother had to be supported all around. Then her
feet started to curl up in the last month and it was too painful to try to
walk on her ankles (also, both legs were twisting in terribly and her leg
brace no longer helped). The last year was very difficult for walking, but
she used a walker as much as she could. (Glad to hear your dad is getting
some relief for the head flex.) Debbie

Re: Cold Tablets

2008-11-16 00:38:52

Sue,
Unfortunately, there's not much a person with MSA can take for a cold
besides tylenol and lots of water. Most over the counter meds
contain psuedoephedrine (the ingredient in sudafed) and that can
raise blood pressure to dangerously high levels. Nasal sprays also
contain chemicals (maybe the same ones, I'm not sure) that can raise
blood pressure. You MIGHT be able to take the Coricidan HP for
people with high blood pressure, but check with your doctor before
trying anything.
Carol & Rob

Re: [MSA] To Patricia

2008-11-15 13:32:09

Hi Patricia.... Peter sounds just like my John. John is more advanced but
you will learn,as you keep reading these posts, that everyone progresses at a
different pace. John was dx'd with PD in '96 and we introduced MSA to his
neuro and he sent John to a movement disorder specialist to confirm SND/MSA
(Feb. 01). You'll have to experiment with meds and see what works for Peter.
Like I said, you'll learn more from this web than any doctor can ever tell
you. Sometimes I think I only need the neuro to get the rx's, cause he sure
doesn't do anything during the 15 minutes we see him. I am always doing
research and reading this web and think I do better than any doctor. I think
most people will tell you the same. Too bad we don't get paid what they
(docs) do !!!!!
I'm sorry I can't help you more right now but keep us posted on things.
Someone is always here to help in one way or another.
Prayers are with you.
Donna in Abilene

Re: [MSA] Names and DST

2008-11-15 11:06:09

Tricia,
But many of us are old and don't always recognize the email addresses :o)
That's why it is always best to "sign" each email. I usually know who I am
writing to, but the other 400+ people on the list may not know if it is Tricia,
Patricia(pjd) or Patricia now in the DC area. There may even be another one. I
sign Bill and Charlotte, because there is another Bill mentioned here often.
Anne became Ausse Anne because another Anne was on the list for while. :o)
Charlotte IS Charlotte Anna.
Are you thoroughly confused now :o) We are all totally confused by the disorder
anyway, so if someone calls me Ray, I don't care. We are only here to goof off
from caregiving or to get away from our problems anyway.
I saw this morning that the Cherry Blossoms should be in full bloom by this week
end. Tourists are coming out of the woodwork here. My two cherry trees are not
bloming yet. Our famous tourists Mei Xiang (may Shong) and Tian Tian (t-YEN
t-YEN) from China are at the Zoo - I sent a card earlier.
Hey Aussies and Guam! We go on Daylight savings time here this Sunday - then we
will only be 14 hours behind you rather than the 15 hours we are now.
Take care all, Bill and Charlotte

You have a National Zoo Giant Panda E-card waiting for you!

2008-11-15 08:57:48

Hi Our MSA friends,
Bill and Charlotte stopped by The National Zoo's Giant Panda Pages
and created a Giant Panda E-card just for you! To pick up your
E-card, simply point your browser at the page listed below.
http://www.fonz.org/pandacards/sentcards/mar26-286042418.html
The card will remain on the server for ten days, so
please print it out or save it as soon as you can.
Then send Bill and Charlotte a card!

Cold Tablets

2008-11-15 00:20:45

Awhile ago I thought there was an email about cold tablets shouldn't be taken
because an ingredient in them was not good for people with SDS. Does anyone
know about this? I have a cold and I don't want to take something that will
harm me. Thanks in advance for any info.
Sue

you didn't offend me,

2008-11-14 17:35:03

James W. Hudson

Re: [MSA] Infections and MSA

2008-11-14 09:43:43

Perry,
This is MY interpretation of what we were told by doctors in 1998, so it could
have some error in it.
The brain tends to protect itself, so in case of infection it starts shutting
down.other body functions such as body movement. Since movement is already
affected, this can cause real problems with muscles such as the heart. A coma
is an example of the body shutting down to protect the brain. Therefore, it is
important to get rid of infection as soon as possible in order to save other
body functions.
Infection is also more prevalent in MSA patients as swallowing becomes a
problem. Liquids are more difficult to swallow and if patients become a little
lazy, they give up on liquids first, result - dehydration and urinary tract
infection (UTI). Aspiration is also a possibility and the result is pneumonia.
If the UTI is not cleared up quickly, it can move on to a blood infection which
is harder to clear up. Oops! I forgot to add another problem. If the patient
is embarrased by incontinence, they will quit drinking in an attempt to cut
accidents - result - dehydration and UTI. It is best to face the problem early
and make an attempt to find an answer.
How are things in Charlottesville?
Take care, Bill and Charlotte
====================================

Re: [MSA] Female Urinary Incontinence Problems

2008-11-14 09:15:33

Get her checked for a bladder infection QUICKLY.
Barb in Texas

Female Urinary Incontinence Problems

2008-11-14 03:39:22

Dear all,
My sister, Celeste, is having some real trouble with urinary incontinence. She
was up 4 times in the night when her bladder just let go. During the day by
noon she has already wet herself 4 - 5 times. Any suggestions? She is mobile
and hates dealing with this problem.
Thanks,
Dawn

RE:To Vera&gt;You Sheila

2008-11-13 14:43:41

Sheila:
You don't know how much I needed this. Thank you for the shoulder to
cry on and the smile on my face
Your always kind.
Vera

Re: [MSA] Welcome Johan

2008-11-13 14:21:22

Johan,
Welcome to the list. Did you notice that we have two other members from the
Netherlands?
Everyone should be aware that there are many other similar disorders to MSA.
The 99% accuracy is a bit optimistic and I would guess it is more like 95%
certain. Disorders like PSP and CBGD are often confused with MSA. There is no
cure for any of them and treatment of symptoms is all you can hope for at this
tme. Keeping that in mind, there are things you can do to help:
Watch closely for signs of infection - confusion, sudden changes for the worse,
fatigue
Exercise - both physical and speech
Make sure to get enough liquids (swallowed not just in the glass)
Proper nutrition.
Take care, Bill and Charlotte
===========================================

To Vera &gt; you

2008-11-13 05:59:44

you are frustrated ...
you are mad ..
you are sad ...
you are cranky ....
you despair ...
you feel sorry for yourself ...
you find joy in the lovely days
you find hope in the sunshine
you find peace in the lovely flowers
you find love in your heart for others ...
you are a caregiver ....
don't ever think of apologizing for the wonderfulness of being you ....
AND KEEP WRITING ABOUT HOW YOU FEEL ..
if allows others to know they are not alone ...
and for those of us who do/may have this ... you give insight into how it is
for others who try to help us ..
cheers luv
sheila

Infections and MSA

2008-11-13 04:01:41

In an earlier email, Bill Werre said
"You should watch for signs of infection as that is a nightmare with most
brain
disorders."
Bill or anyone: Can you say a bit more as to why infections are especially
troubles with MSA?
Perry Sennewald 804-244-0018

Re: [MSA] Digest Number 627

2008-11-12 13:32:47

I follow this group for a couple of month. I am 58 years old and recently
diagnosed as MSA (SDN). I have the same symtoms as the husband of Patricia.
I was diagnosed by my neurologist as Parkinson by july 2000. Ten the
medicine did not work properly, my situation detoriated and he suggested a
PET scan. That is done in the academic hospital in Amsterdam (I am from the
Netherlands). According to my neurologist the scan proved for 99% certain
that I had MSA. So maybe this information can help Patricia and her
husband. Of course hearing of the diagnose of MSA was a terible experience.
On the other hand it gives a certain rest knowing about it and no longer
looking for all kind of possible causes.
Take care!!!!!
Joahn Lock
Message: 15
Date: Mon, 26 Mar 2001 03:11:13 -0000
From: pjd@...
Subject: Need some information
Hello, Can anyone tell me how to get a firm dx of either MSA
(striatonigral Degeneration) or Parkinson's? My husband has been
seeing the neuro for months and has been drug challenged with Permax
and Selegiline. These seemed to help for a time but he is right back
where he started now, maybe a bit further back. He has bradykinesia,
rigidity in right arm, stooped posture, low mumbling voice, some
confusion, extreme fatigue, etc. The neuro keeps saying he can't
give us a firm dx. Isn't there a test? The reason he thinks it
might be sd is Peter has no resting tremor and he is young (50) or so
the doc says, to have Parkinson's. He also has sleep attacks quite a
lot. Sometimes his eyes look very blank and he often calls things by
the wrong names. Does this sound like sd to you folks? Any help or
information would be very much appreciated. Thanks
Patricia

RE:To Vera-Barbara in Illinois

2008-11-12 09:14:15

Barbara in Illinois;
I didn't mean to offend you, I'm very sorry that I have. At the time
I wrote,I was very frustrated and I'm only human.
I apologize to you and anyone else that I have offended
Always Vera

Goodnight

2008-11-12 05:48:05

Good night everyone. It has been a good day of sharing with all of you. May you all have a rest filled night and a great tomorrow.

Time for this old gal to crawl off to bed.

[INLINE] Barb

--

"We have quit learning if we don't feel a little more ignorant every day".
William D. Tammeus

Re: [MSA] Need some information/Patricia

2008-11-12 00:47:10

Hi Patricia!
My dad was originally dx with PD in July of 99. The
medications didn't seem to be controlling his sypmtoms
and he seemed to be declining too rapidly for PD, so
he went back to Mayo in January of this year and dx
was changed to MSA. He seems to have symptoms of all
three types, but more of the SND and SDS symptoms.
Although we didn't know it at the time, in retrospect,
his first symptoms were wild dreams and bladder
dysfunction. He later developed a slight tremor in his
right hand and "micro-writing". Then came the stooped
posture, rigidity, slow movements and greatly
decreased volume when he speaks. He has some trouble
with slurring his speech, but it's not too bad. Most
recently he has developed the "shuffle walk",
orthostatic hypotension, some vision (focusing)
problems and balance problems. His most troublesome
symptom is severe cervical dystonia (head flex). He's
getting some relief from that as a result of Botox
injections three weeks ago. He has the burning pain in
his neck, too. So far, he hasn't had trouble with
swallowing or dizziness.
As far as medications, he takes 750 mg. of Sinemet per
day, Baclofen, calcium in the form of nasal spray,
multi-vitamin and some kind of fiber tablet. He was on
Permax, but was taken off of it by the Mayo Drs. I
think (but I'm not sure) that it was causing BP
problems. He also gets PT three times a week and does
range of motion exercises at home. All of his Drs.
have told him that people who stay active and exercise
"do better longer". Still, he seems to be so declining
fast, though.
I have days when I'm ok with all of this and days when
I'm so frustrated that I just want to cry. (Many times
I do). I just feel so helpless, like if I just looked
a little harder, I could find "the" miracle for him.
I'm not too good at "acceptance", but I'm working on
it. :-)
I wish I had more answers for you, but I am just
learning myself. You'll get lots of good information
from this group, though.
Sorry you have to be her, but welcome anyway. :-)
Melanie in OK

Patricia

2008-11-11 15:54:48

Hi,

I have only been with the group for a few months. I have learned so much from Bill and the others that have been here a long time. Right after I first joined, Dave became very weak and I thought that it was the disease process. Bill talked about how infection would make symptoms worse of MSA and he was right, Dave had a UTI. After treatment he regained some of his strength. Another thing , when Dave has fever he will become lethargic and he gets so weak until I can't get him out of bed. It's like all the symptoms of MSA triples in severity when he has an infection. The importance of physical therapy is another thing I learned form the group. You can learn things from them that no doctor can tell you.

Feel free to email me anytime you feel you need to talk. We are all here for you and know what you are going through.

Take care, Kathy

Re: [MSA] What A Blessing you All Are!

2008-11-11 13:57:08

Here is a hug from Arlington, Texas

[INLINE] From Barb to Betsy

--

"We have quit learning if we don't feel a little more ignorant every day".
William D. Tammeus

Re: [MSA] Need some information

2008-11-11 01:58:02

As far as I know, there is no diagnostic test to
confirm a dx of MSA or PD. My father was told that
they dx you by going on symptoms. He spent a week at
Mayo having many tests done that might indicate
MSA...sweat tests, tilt table tests, etc. He was told
that he most likely has MSA, but Drs. can't be sure
until a post-mortem autopsy. It's very frustrating,
but we've accepted it.
Melanie in OK

Need some information

2008-11-10 21:13:05

Hello, Can anyone tell me how to get a firm dx of either MSA
(striatonigral Degeneration) or Parkinson's? My husband has been
seeing the neuro for months and has been drug challenged with Permax
and Selegiline. These seemed to help for a time but he is right back
where he started now, maybe a bit further back. He has bradykinesia,
rigidity in right arm, stooped posture, low mumbling voice, some
confusion, extreme fatigue, etc. The neuro keeps saying he can't
give us a firm dx. Isn't there a test? The reason he thinks it
might be sd is Peter has no resting tremor and he is young (50) or so
the doc says, to have Parkinson's. He also has sleep attacks quite a
lot. Sometimes his eyes look very blank and he often calls things by
the wrong names. Does this sound like sd to you folks? Any help or
information would be very much appreciated. Thanks
Patricia

What A Blessing you All Are!

2008-11-10 19:56:28

I recently introduced myself to this group,my husband Charlie has been
diagnosed with MSA.As most of you know that are caregivers time is so
demanding.I just wanted to say thank you to all of you that share your
encouragement and experiences.This site is a true blessing to me.
As many of you know the medical profession has not taken the time
necessary to educate and respect the need of each of us that are in
this journey.We do not expect answers that are not available just the
right to have the diginity to deal with this disease.There have been
so amny of you that discuss problems and past experiences that allow
me to not feel so all alone.There is a special feeling that this group
automatically transmits of true friendship and love for others.
I may not post very often but believe me I am in touch.
God Bless You All. Betsy

"spiralling"

2008-11-10 13:01:33

Yo Elaine and Bob, Wish Jan could still try to talk, get anxious or loud as in the past. Y'all gotta slow down, you go too fast--remember the old song?--gotta make the moment last? Barb in Texas gave the best advice, ie to love him thru it. He's trying to perform as a "normal" person and the abnormal equipment doesn't work. Stress makes everything harder. When broken down, the series of commands are numerous and processing is difficult. Even the elevator may be a control challenge. Reaction time slows and some responses disappear completely. Think each step, breathe in, assemble a thought, form a word using air, tongue, teeth, lips, volume, expression , suitability, effect--and what if speech slurs, others stare or disapprove-- all this takes lots of time and often a huge amount of courage for one who is told the future is all downhill. We all get exasperated . I embroidered a serenity prayer for myself and hung it in the kitchen Helps also to leave the
scene to cuss or cry. LA Louise with love and best wishes for both of you.

Middle TN MSA Support Group Meeting

2008-11-10 10:59:55

The Middle TN MSA Support Group will hold it's next meeting in Nashville
on Saturday, March 31, 2001 at 2 p.m. We will be meeting at Vanderbilt
University's Medical Center North, Third floor, CRC Conference Room.
Dr. Rose Marie Robertson, MD will be our guest speaker will lead a brief
question and answer period.
If you have any questions please feel free to contact me.
Christine R. Latham

Vera,???

2008-11-09 19:16:10

What in the world are tams and glutters to roll a w/c on? Sounds like
family fun if the weather is good! LA Louise in Springhill where the baby
bunnies sit so still you must be careful where and what you chop with your
hoe.

We have all been there

2008-11-09 13:18:09

Oh that is a very tempting thought, wish I had thought of it 40 years
ago. With four kids under 6 years of age.
Read this........it's a tempting thought!!!

Re: [MSA] Voice-recognition software - works?

2008-11-09 12:20:53

Greetings!
You were wondering:
Yes. As long as the voice remains consistent. But remember, the farther
from 'standard' the more 'training' is necessary. But yes, it does work.
Regards,
=jbf=
John B. Fisher

RE: [MSA] Multi-Pet Sleeping Arrangements

2008-11-09 05:38:19

Great picture.

When we watch TV here, the dogs take the couch and the humans prop up the dog beds for comfort. Debbie

To Vera

2008-11-09 04:16:28

Vera,
You probably don't know me because I don't post much.I've enjoyed your
humorous tales, but I don't think they are so funny anymore.
As a person who always felt responsibility for the addicted or sick in my
family, I finally learned and ALLOWED myself to say "NO, I will not
destroy myself for your needs or desires". I know it is very hard because
you believe that if you just can do everything for the sick one, you will
have done your best. It doesn't work out that way. Please say to your
husband that YOU cannot do all these things, and if he insists on doing
them, he'll have to do them by himself. You have to take care of yourself
first or there will be no help for your husband.
Each of you has to accept the facts. Please believe me.
From one who has been many places.
Barbara in illinois

it's morning?

2008-11-08 20:04:48

WHOOOEEEE!!!!!!!!!!!
What a schedule. I had to rebel when I had an assignment over load.

Even mules have to rest a while or they will drop in their tracks. You will too if you are not careful. Ralph was a boss for so long I had a hard time convincing him I was a partner not an employee.

He always had something for me to do or he had something to start and I wound up finishing it. Finally had to sift it all out and do the necessary things and forget the rest. But to him everything was necessary, like done yesterday.

It may be a part of the illness or just a part of the personality. Could be both.

Keep cool. Get your rest.

Love to you.

Barb in Arlington.

[INLINE] Hang in there.

--

"We have quit learning if we don't feel a little more ignorant every day".
William D. Tammeus

Re: [MSA] Balance problems-elaine

2008-11-08 06:11:51

hi elaine: my husband has great difficulty speaking. the words are
sometimes impossible to understand & when I asked him to repeat so i can
understand what he has said, his voice is very loud, like he's yelling.
he says he's not yelling, but has to take deep breaths to make the sound
come out. this disease is very frustrating to everyone. regards,
jerrie

bifocals...

2008-11-08 00:22:26

Thanks! I'll pass your email on to my dad. He sees the
Dr. tomorrow.
Melanie in OK

it's morning?

2008-11-07 23:04:26

Vera,
In my dad's case, I think it's just hard to accept
that he can't do these things anymore. He has a strong
desire for his interests to "live on" even though he
can't take care of things. For example, he has always
loved gardening. Having been raised on a farm, a big
spring/summer garden has always been a part of his
life. Obviously, he won't be able to garden this year.
He had one last year, but it was very difficult for
him. Well, he had his neighbor come an plow up the BIG
garden plot and my mom and sister are going to plant
and tend the garden this year. My mom couldn't be more
excited. :-P
While it's very frustrating for my mom, I can
understand it being difficult for my dad to accept
that he can't do the things he's always loved. His
life has changed so much in the past year and he feels
like he's hanging on to his "old" life by his
fingernails. All in all, I think he's doing pretty
well. I just pray that my mom lives through it. :-)
(((Hugs))) to you, Vera.
Melanie in OK

Vision Problems in PD - Part II from Parkinson's Information Ex

2008-11-07 16:43:10

Click here: Re: Vision Problems in PD - Part II from Parkinson's Information
Exchange Network <PARKINSN@...

Check out Vision Problems from Parkinson's Information Exchange Network &lt;PARK

2008-11-07 12:15:38

Click here: Vision Problems from Parkinson's Information Exchange Network <
PARKINSN@...

Check out info

2008-11-07 05:37:57

Click here: info

Check out Vision and Automobile Driving: Fitness in PD

2008-11-07 01:20:33

Click here: Vision and Automobile Driving: Fitness in PD

bifocals...

2008-11-06 13:09:22

Melanie:
Your father's best bet in dealing with his Opthamologist is to say
that he had Parkinson's plus rather than MSA. Most Opthamologists are aware
that Parkinson's patients do not do well with Bifocals. It was our
Opthamologist who first told us a number of years ago. Some
Neuro-opthamologists think it is good for these patients to wear glasses with
prisms. I have known some PD patients who have had good results with these.

bifocals...

2008-11-06 10:10:34

Melanie,
Sorry, but the only documentation we have on this problem has been common
problems here on the list. Our opthamologist did note the time to adjust
between lenses was great and did suggest the two sets of glasses, but only after
Charlotte mentioned she had problem with feeling dizzy when she went from the
near to far or vise versa.
Your dad may want to point out that MSA is basically Parkinson's plus other such
as cerebellar involvement and mention the forms of MSA like OPCA and
Shy-Drager. He may have heard of them.
Take care, Bill and Charlotte

Re: it's morning?

2008-11-06 09:15:30

Hello,
just a fast note to let you know I'm alive, dead tired but alive. Fred is
working me to the ground, and I do mean the ground, he has us outside working
in the yard putting out the tam's to put in a walkway for the w/c. I keep
thinking that he'll run out of things for us to do, but the list keeps
getting longer and longer. Is this just something that people with MSA go
through or is it denial on Fred's part that he thinks we can do all of this.
He try's to do what he can, but get's so weak and won't do things a little at
a time. The thing that I don't understand he'll say his to weak to go to p/t,
but then will do things like this. He know's he can't do it, so that means I
have to get out there to help with it. I sure don't know what he is trying to
do. We have everyone's trash can's in the neigborhood filled with our green
waste, and we still don't have the glutters up. Really is this something that
his going through? I really need a rest between all these things he wants
done, and who ever is having the coffee latte , save me some. It sound really
good.
I'm sorry this may not help anyone else, but if I don't joke around like
this, I'd be crying. I came across a saying the other day , it explains how
somedays are.
"I try to take one day at a time, but sometimes several days attack me at
once".
I'm sure some of you understand that. Don't mind me .
Over worked and under paid.
Vera

Re: [MSA] Balance problems

2008-11-06 02:11:35

Melanie,
That is a sign of cerebral involvement or the OPCA type of MSA. While there are
some exercises that people say can help, it is something that you have to be
careful of, since falls can severely hurt the patient. Ultimately a wheelchair
will be the answer. It is also time to consider giving up driving, if he has
not already done so.
Take care, Bill and Charlotte
=====================================

bifocals...

2008-11-05 16:29:13

Does anyone know where I can find a reference noting
that MSA patients having trouble with bifocals? My
father is going to his opthamologist tomorrow and
would like to talk to him about it. This Dr. doesn't
know much about MSA, and my father would like to take
him some information about MSA and vision problems.
Thanks!
Melanie in OK

Insurance and experimental procedures

2008-11-05 11:50:00

Hi all,
This news story points to the problem which will be created if NIH does not do
the stem cell research and a cure is found in another country or by a private
firm here in the USA. Insurers will consider it experimental as NIH has not
done the research.
Take care Bill and Charlotte

Balance problems

2008-11-05 08:22:34

My father seems to be having more trouble with
balance. He says he "feels unsteady" but not dizzy. Is
this ataxia? If so, is there any medication that might
help? I'm not too familiar with that part of MSA.
Thanks in advance!
Melanie in OK

Reminder - SUPPORT GROUP MEETING: Northern Ohio are...

2008-11-05 00:39:54

We would like to remind you of this upcoming event.
SUPPORT GROUP MEETING: Northern Ohio area
Date: Sunday, April 8, 2001
Time: 1:00PM - 3:00PM GMT
Date: 2nd Sunday of the month
Time: 1PM - 3PM
Location:
Southwest General Health Center
Room C-1 (basement level) 28697 Bagley Rd,
Middleburg Hts, OH 44130
Northern Ohio PSP Support Group
invites all those with MSA and other similar neurodegenerative
diseases
and their families and caregivers to join with us in mutual
support.
These diseases have more similarities than differences and we
share the
same problems.
Contact: Pat Beekman
mombeekman@...
for more information

living with cat and dog

2008-11-04 17:47:52

I share a bed with both a cat and dog .... dog migrates to drape himself
over my head on some mornings .. (he is a Cavalier King Charles spaniel)
(the kind that Roger Karras says, in his bass voice, is "the ultimate
companion dog " ).... I'll say .. he sure isn't a guard dog ... hasn't met a
stranger that he didn't think as a friend he just met ....
Cat sleeps on other side, as mentioned in essay. They meet in the morning
at the end of the bed, touch noses, and ck ears and go down for breakfast
and outside to ck what is happening.
Cat is insistant on having lapspace when I am reading the paper, at the
computer or reading in bed. Pushes paper away with his nose, comes up
underneath and looks accusingly at me if I don't move quickly enough.
Some days, I am sure they are hanging around to check how I am doing ...
making me move, letting them outside, feeding them ....
Today is sunny, but cold, in CT .... waiting for spring .... and leaves and
flowers ...
cheers
sheila

Re: [MSA] RE:Vera-Kathy

2008-11-04 13:10:09

Hi Vera,

I am so thankful that your son and his family survived the explosion. It sounds like a miracle. yes, we are a lot stronger than we think. I told my sister yesterday, what a blessing all of you have been to me. Thank God for you.

Take care, Kathy

Re: New Zealand. Anne

2008-11-04 00:18:44

I have heard that New Zealand is the most beautiful country of the Pacific
to visit. Ask your sister to tell us a little about it.
I to wish you very well.
Marilyn in TN

Re: [MSA] I forgot to send the picture

2008-11-04 00:10:38

Judy,

I would double the size, it's a bit small. Right now it looks to be about 2" X 3" make it about 4" X 6" it should still be about a 50k file

Take care, Bill and Charlotte

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

I forgot to send the picture

2008-11-03 20:06:31

Hi Again,
Guess I'm having the same kind of day I ALWAYS have. Forgot to attach the
picture. Here goes! I'm just too excited, I finally learned how to do
this(or not), only had the scanner for over a year and using Bill's
directions from a message dated 3-17-00. THANKS BILL
Judy

Multi-Pet Sleeping Arrangements

2008-11-03 08:02:03

Hi All,
Just had to send this picture I took yesterday morning to send home to
Mother. Yep, that's right, king size bed and all. Becca is the LARGER than
LARGE amazon puppy, Christine is the next largest, and Fat William, well, I
guess you can pick him out. Where do I sleep? Anywhere I can fit in!!!!
Take Care,
Judy

Re: [MSA] Names &amp; Things

2008-11-03 05:43:17

[INLINE] Louise, I just read your note to Jim. Our birds are taking lessons in swimming, the air is so full of water.

Barb, in very soggy Texas.

--

"We have quit learning if we don't feel a little more ignorant every day".
William D. Tammeus

Names &amp; Things

2008-11-03 02:16:46

JIM Are you an early riser? Puter before coffee eyes not open mental capacities still asleep? Teasing--I'm that way. High point of every day is strong caffee latte and a cursory check to see if the world is still there. About names, people often play around with Louise. Some omit the i, others put it in the wrong place which is Lousie, and Louie, Louie. Louie after the old vocal was/is a long term nickname. Louis adorns my mail often usually on advertisements to buy truck accessories and hunting equipment. S'awright. Gottanother puzzle for the chemist. Household bleach (Clorox) is a good disinfectant, yes? If you launder with color safe bleach detergent do you kill creepycrawlers in the same manner? Where are you ? Do you grow worms in compost, too? I rejoiced too early about no rain. Last night it poured and the few and far between streetlights succu mbed to lightning. Local farmers worry about corn planting and damping off. Good thing
Shreveport and the casinos nearby ( 1 1/2 hours by interstate) help with income. Jan coughs, I run. LA Louise where the robins need galoshes.

RE: [MSA] Sheila (sleeping with animals)

2008-11-02 17:13:41

Sheila, Those of us in multiple-animal households know that a king-size bed is NOT big enough, no matter what the configuration you come up with. Just a few months ago we had 3 dogs and 4 cats sharing our bed. We are down to 2 dogs are 3 cats but it is just as crowded. I don't even mind that I don't get any sleep -- it's the nose licking that begins at 5:00 a.m. to wake me up that gets to me. Debbie

Re: [MSA] good and true information ;-]

2008-11-02 10:36:17

Sheila,

There is an alternative! You add a new command "RUG". You do have to become accustomed to extremely dirty looks (If looks could kill). Beagles take more than 30 days to become accustomed to this command. Until we got the hospital bed and I put it up high, she would still sneak b