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