Hi everyone:
I talked to my sister-in-law who started up the Rosie O Donald
web a few years ago. She said that all you need to do is go to Rosie
on aol. I looked it up and she has a chat at different times. If any
of you would like to try that.
Hope it helps
Vera
Hi John
So, you don't like not being able to breathe, huh?? It takes a bit of
getting used to, doesn't it. But then, we all have it so it's just a
way of life around here.
First, the steroid inhaler is a long term use, ONLY for maintenance to
reduce the sensitivity of the lungs and bronchial tubes. It does
nothing to help an asthma attack or reduce the symptoms of one once it
starts (or your problem, they are treating the wrong thing, in your
case). What you need is a breathing machine for use at home and a
prescription for the saline solution to use in it and either Albuterol
or something similar that acts as a bronchial dilator for use 2 or 3
times a day. There are also tablet forms of albuterol taken by mouth
but I don't think they work as well.
Also another form of bronchial dilator you already take for you sleep
problems or something similar like Slo-Bid (Jayme and I both take that).
There are quite a few on the market.
The problem is, I don't know how that would react with your BP and other
meds so some pretty tough checking needs to be done. Most of these meds
really raise the BP. That's why I'm finally starting to have problems
with mine after always having almost perfect BP most of my life. I take
allergy pills and asthma pills 2 x daily and use an inhaled steroid for
maintenance. Billy uses Singulair also in addition to his meds. He has
been on a breathing machine since he was 10 months old. We have been
able to reduce or take him off it in really clear times. But weather
like we are having now with the Alternia mold at over 10,000 count, we
have put him back on it. At times, we can just use the inhaled saline
solution 2 x a day and he gets along ok.
It's all in the management and learning what to stay away from and
knowing when you are in trouble early enough to stop it before it gets
out of hand. It isn't fun to not be able to breathe. That's why I get
so upset about people using things that reduce my capacity or trigger a
response. I kinda enjoy breathing!!! :
Have a visit with your doc, John. Soon!!
Sally
I see some of the time that you talk about the stages of MSA and
PD. Is there stages and how many are there and what are the stages?
Would really like to know.
thank You
Vera
Ok! here you go Fordy , I did get the wet noodle back, so I'll pass
it on to you
Take Care of it
Vera.
my new address is..........HBise1@... Bise(Hawaii)
Greetings Trevada!
I'm so sorry you need to be here. But you'll find this is one of the best
support groups out there! Lots of people, with lots of experience.
Let me tackle the easy question first:
Yes. Essentially, anything that interferes with blood pressure (up or down)
can be bad for someone with Shy-Drager Syndrome (which you'll also see
referred to as MSA for Multiple Systems Atrophy). It should be monitored
and managed by his physician.
Now, let's deal with the tough question:
Trevada, it's really hard to tell for certain. However, I would venture to
guess he probably only knew something was going on for a few years. But it
really depends. It depends on whether he faced any infections. Did he have
any serious accidents. Anything that stresses the body (infection, bad work
situations, etc) seems to intensify the symptoms. They also seem to just
make it worse over the long haul.
And that's where you need to suggest your bother focus. For example, if he
snores very loudly, and seems to gasp or snort during his sleep, then he
should talk to a sleep specialist. If he's not sleeping well, that places a
very strong 'hidden' stress on his body. And removing it helps. It can
help a lot.
Or perhaps he might have a urinary tract infection (UTI). Getting it
addressed will help with symptoms. Oh, and don't assume that if he's not
running a temp he's okay. My normal temp is 97. So a temp of 100 (that I
have now ... hmm, knew this was a bad cold!) only means I'm a lot sicker
than you might expect.
The most important thing for Anthony to do is to learn to manage his
symptoms. Medications can help many of the symptoms. Don't try to be tough
and 'go it alone'.
And for you, Trevada, please feel free to come back and continue to ask
questions. No one will ever criticize an honestly asked question within
this group.
Regards,
=jbf=
John B. Fisher
Trevada,
Welcome to the list. No - there is no way to tell how long he has had MSA (I
say MSA rather than Shy-Drager because it sounds as if he may have cerrebellar
involvement also. MSA is the newer name for this disorder anyway.
Yes, it is not good for a person with MSA to take some cough medicines. Best to
ask the doctor about that and stress that you heard some were bad for MSA
patients.
What medicines is he taking? The symptoms of MSA can be treated even though
they have no cure at this time.
Take care, Bill and Charlotte
Trevada,
Hello, and welcome to the group, although I'm sorry you have a reason
to be here.
It's hard to tell, even from the symptoms, how long your brother has
had MSA. One of the doctors at the Cleveland conference said that
about 70% of the neurons die BEFORE symptoms appear. One thing you
will learn from this list is just how different each patient is. As
you have probably already heard, there are folks here who were
diagnosed 20+ years ago, and they are still doing fairly well. Some
go down hill much faster. Don't try to beat the clock, just
encourage your brother to enjoy his life to the best of his ability.
My husband Rob was diagnosed nearly 3 years ago at age 51, and he is
still doing pretty well. He certainly has his bad days, and we have
to slow down and take those in stride. But, we traveled to Turkey
and Greece last spring, and we plan to travel to Japan in April 2001.
Life goes on!
In terms of cold medication, the thing to avoid is psuedo-ephedrine.
This is a stimulant, and is found in many cold medications, notably
Sudafed. If you have ever taken sudafed, you probably know that it
can make you (a healthy person!) feel hyper and increase heart rate.
It also raises blood pressure, and for someone already taking
medication to raise blood pressure, can cause blood pressure to spike
to dangerously high levels. You have to be careful of other cold
meds also, so it's best to check with the docs before taking anything
over the counter, including herbs or vitamins (other than standard
doses of multi vitamins.)
Since your brother was just diagnosed, I'm sure you and he will have
many questions about medications and the like. Feel free to ask this
group - someone will always chime in with some good advice.
Hang in there!
Carol & Rob
Greetings Judy!
You bring up a very good point:
I usually recommend that someone that is scheduled for a sleep study should
head over to the sleep lab a couple of days prior to the study. Schedule
the time with the lab. Ask questions. Look at all the gear. Remember that
most people are proud of what they do. Someone working in a sleep lab can
literally make a life and death difference for people. Ask them what to
expect. Ask them how they like their jobs. See how interesting and fun it
really can be.
BTW - I also shared your husband's interest in the process. I asked to see
the output from the study. If nothing else it allows you to be a bit more
patient when they say it will take some time (days) to interpret. Folks,
they gather a BOX full of information.
The first time I slept with the mask (when they were adjusting the
pressure), I knew it had been a successful night. The sleep tech had just
left, I spent a few minutes startling awake (due to apneas). Then the next
thing I knew the sleep tech was waking me. I was certain something was
wrong. I just went to sleep. But nope. Almost five hours had passed, and
I didn't KNOW!
For the first two weeks after getting my very own unit, sleep so pleasant it
was almost erotic. I would come straight home from work and sleep. For the
first week I slept 12 hours per night. The second week, I could only sleep
8 hours per night. I was disappointed.
So, wearing the mask is NO problem for me. Sleep is very addicting! ;-)
If that becomes a problem, the following site provides an interesting
alternative for the full face mask:
http://www.opap.com/
But very glad to hear someone else finds this so interesting and enjoyable.
Speaking of sleep! ;-)
Regards,
=jbf=
John B. Fisher
Hi,
I'm also a new member and I'm really not sure how I'm suppose to send
messages. I hope I'm doing it right.
First of all, I thank God for this website, and I want to thank each
of you for your helpful information. My brother, Anthony Port, was
diagnosed about 2 weeks ago with Shy-Drager Syndrome. My brother is
a
very private person and he tried to keep all of his symptoms from us.
These are the symptoms that I know he has and I'm sure there are more
that I don't know about. He is already passing out from low blood
pressure when he stands up. He has balance problems, slowness in
walking, mild tremors, and muscle stiffness. His speech is slurred,
and he is having to catheterize himself. Can anyone tell me based on
the symptoms he is experiencing about how many years it sounds to
them
he has already had this disease? Also, I read something about it is
dangerous for someone with Shy-Drager Syndrome to take cold medicine
if they get a cold. Is this true?
Thanks,
Trevada Granberg
sleep
apnea
symptoms.
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