Good Morning John,
I know what you mean, My PT released my to go to the surgeon.
They were assured at the time, I was not improving after 8 weeks.
I don't know what they are thinking.
Thanks for the posts
Happy Thanksgiving to you and your family.
Love and prayers
Donna Maggard
Hi Pam you can include my name on the directory:
Rosalee Schmidt Sask, Canada email address:
bob.rosalee@...
Vera dear,
I'm so sorry you're having a down time. You know my dear it comes to us all
at some time or other. We caregivers are human and have to have sometime to
let off our feelings. I haven't written you lately and am sorry for not
keeping in touch. Seems like I'm swamped even though I have help a couple
days a week. Take care my dear and know you are thought of and prayed for.
Hugs, Mary
Hi everyone!
This is safe. I work for a school district in South Carolina near this
area. I called the school to make sure that this is legitimate and it is.
The secretary at the school said the children were already hearing from
people as far as California. I'm sure they would like to hear from some of
you.
Trevada
Reply to Vera: So sorry you are having a bad day. Vera, you bring
so much sunshine to others. Would give you this entire day filled
with sunshine if I only could.
So many times you'd write about some perfectly horrid thing (example:
parking in handicapped during your grandchild's birth - nightmare
that followed), I'd read it and see that, yes, we all have bad days,
and I would laugh at your wit, and I would feel better. Or maybe you
would just send me a little note telling me how you, too, identified
with the words in the movie where Anthony Hopkins remembers, "The pain
that is now is part of the happiness that was then. That's the deal."
I would think, "Here is this total stranger who has written me to
tell me that these same words touched her too." And you would make me
feel not so alone.
I even quoted some of your writing to my friends when they thought
they were having bad days. I would say, "Let me tell you about this
woman who was trying to go see her new grandchild and her husband got
mad because she could not take him and she finally got there and then
had to fight for ages because she parked where she normally parks with
handicapped husband. Just let me tell you about her experience. It
will blow your mind." I would read it and we would decide that maybe
our day was not that bad after all. You have such wit that you are
willing to share with others, Vera, and, too, you show such
compassion.
Go out on the patio, fix yourself a cup of coffee, sit there and
think of all the people in this group. We care, Vera! And we want
you to have a good day, and we want tomorrow to be even better for
you.
Love,
Donna Waggoner
Nancy:
Right now I'm reading your posting to me, but it's not making any
sense. It's nothing that you did, it's me. I'm really on a down
today. I guess it's kind of the caregiver burnout. From reading all
the posting I knew that it could come, so it's not a suprise right
now that it's here. It's not a good day at all. I'm crying now, but
that's usually what I need to get me going again. Guess I really need
a good, good night sleep, but I don't remember what one is.Maybe
that's what I can get for Christmas? It would be nice.
John told me once that I would make it, i'd be alright.Can't even
remember the songs that were going across my mind at the time. Maybe
I just need that cup of chocolate rasberry coffee, maybe that would
be all I need. Reading Barb posting about Ralph , I can see so much
of Fred in it. So much to do and so little me. I wonder if he ever
told her , that she didn't care? I'll go now, and be back later when
I'm over my crying and feeling sorry for myself.Love all you guys and
thanks for everything.
hugs
vera
Hi Barb,
Were you able to figure out what these things mean from the stuff I
posted yesterday?
Autonomic dysfunction is essentially orthostatic hypotension and bladder
problems. Extrapyramidal deficits lead to Parkinson's-like symptoms.
Cerebellar deficits lead to ataxia and balance symptoms.
For a diagnosis of "probable MSA" you need to show
autonomic + cerebellar OR
autonomic + extrapyramidal OR
autonomic + cerebellar + extrapyramidal
I posted some new research the other day by Dr. Kaufmann that talked
about the possibility that Pure Autonomic Failure, MSA and Parkinson's
are all variations of the same underlying disease process. I thought
that was quite an interesting concept and if it's proven right it would
mean that people with MSA actually belong under the Parkinson's
umbrella. Things seem to be moving more rapidly now on the research
front as they are making new discoveries every day. We already had
heard recently that people with Parkinson's, MSA and Lewy Body Disease
all have a protein called alpha-synuclein in their brain cells and
researchers were now lumping these disorders together and calling them
Synucleinopathies.
We should all support basic brain research because the breakthrough lies
there at the cellular level as researchers uncover the chemical
processes that regulate brain cell functions.
Hugs,
Pam
Click here: American Association for Geriatric Psychiatry
Just a reminder to those who've recently lost loved ones that there is
another support group specifically set up to offer support and comfort
to those who are grieving. As always, everyone is welcome to remain on
the main Shydrager list.
To join:
Send an email to MSA-Angels-subscribe@egroups.com
OR
Go to: http://www.egroups.com/subscribe/MSA-Angels
Hugs,
Pam
Greetings Donna!
Due to ongoing pressures on the medical community, I found that most
physical therapists try to limit their work. My PT provided guidance on the
type of exercises I should do. Once she knew that (a) I would not improve
through further PT, and (b) I had a good grasp of the exercises, then she
released me from further PT. Nor do I really mind that, since at this point
there is no problem with my performing the work. It also helps contain
insurance costs, which I ultimately pay.
However, I do object to the Medicare rules that deny PT when there is no
chance of improvement. In my mind, if it helps MAINTAIN, that should
suffice.
Regards,
=jbf=
John B. Fisher
A happy heart is good medicine.
think about that today
nancy:)
Has he had all 24 appt with the aqua therapy yet?? WHen the insurance is
up or medicare or whatever they usually tell the patient they have an
option of private pay or stopping the therapy. For myself I find rehab
therapy a never ending daily activity even if the insurance says it
isn't necessary.
ohhh... ok sounds like ur at a fitness place that has medicare
/insurance certification and therapists that are certified??? We have
one chain in ohio. I chose the club across from the hospital that the
docs and nurses go to on their off time and lunch hour, which is
anywhere from 11am to 1 pm. lifting weight s for arms is way less that
on ur back. I didn't know it was for his back. As for Mirapex. When I
went off that lovely drug my joints were in very pain pain. and my size
went back to a size 4 from a 13/14 Thank God:) Now i know what normal
woman go through with all those different clothes sizes. i have 2 sizes
now xlarge and x small. Anyway.... do they take his BP and pulse and
level energy ( self perception of energy given to the task)?? Did he
have a Pt and OT and stress test done? I pay for mine , but I have a
more then 1 person there. Why is he on an agonist? Did he get taken off
slowly? That can affect ur BP and joint swelling,ect.
Can u join in with him when he is exercising. I find the stretching
helps the hha relaxx a bit and they love that 15 mins of just stretching
in the middle of the day. Then they eat lunch by themselves. It serves
well for both me and the caregiver.
You and Fred both talk to the doctor. Write everything down before u go
or talk to the doc. Make the doc a copy too.
Thank you for letting me know about the weights, 1 to 5 lb weight
really don't seem to bad, but Fred said he is lifting at least 30lbs
for his back. I think this is way to much for him. He hasn't been
doing at all well this week end, not sure if it has to do with the
weight lifting or if it's because all the mixapex is now out of his
system or maybe it's just another thing with this illness.
Take Care
Vera
Hi Karen, what is Neurofascial therapy? Have any of the Doc's told you what
is causing the swelling? Thanks for your response.
Take care
Fordy's Michelle in Oz
Nancy:
I'm not sure what your insurance & medicare covers, but our insurance
that Fred had from when he worked in the market and the medicare ok'd
the 12 appointment for the aquatic rehab, plus another 12
appointments after that. This is all done in the LA fitness. When I
went to take Fred the first time, I was looking for a doctors office
and went right pass the Gym. I really didn't think that the
appointments were at a Gym, but they were. They also movied him from
the Orange L.A fitness to a one closer to us. He was doing ok with
the aquatic rehab, but now that they have him doing the weight
lifting, he doesn't seem to be doing as well. The trainer has him
lifting about 40lbs weights for his back, this seems to be to much
for him. That's why i asked about the weight lifting question.
Vera
COUNT YOUR BLESSINGS... - (Absolutely beautiful)
AOL Viewers:
<a href="http://www.thisfunsforyou.com/cards/thanks_1.htm"
Other Browsers:
http://www.thisfunsforyou.com/cards/thanks_1.htm
Tell me please what insurance or how to get medicare to pay for exercise
and the trainer.
All were informed that medicare and insurance cover cardiac rehab if u
have
basically a heart attack, Fibs, CHF, Chronic angina unresponsive to
meds, heart transplant... PT is covered as long as improvement is being
made, used for endurance, ect. and it has to be a a medical setting not
a exercise center.
Anyone have a different experience with insurance and medicare?
I am sure the Docs have patient's care in mind. They have staff that are
calling the insurance and the government all day for payment.
nancy
Adaptability has velcro weights that increase at 1/5 lbs increments.
I also wear a pulse monitor and bp is taken before , during and after
exercise at the rehab center.
nancy
http://glaxocentre.merseyside.org/smapaf.html
http://www.medhelp.org/perl6/neuro/archive/12877.html
http://www.ndrf.org/ChatSpring98.htm
Q:
What is the difference between Shy-Drager and Pure Autonomic Failure?
A:
The Shy-Drager syndrome is now known as multiple system atrophy (MSA). Pure
autonomic failure used to be known as progressive autonomic failure or
idiopathic orthostatic hypotension or the Bradbury Eggleston syndrome. Both
conditions cause orthostatic hypotension. The biggest differences between
MSA and PAF are that the former is associated with involvement of the brain
and spinal cord (causing parkinsonism, or cerebellar problems) whereas the
latter affects the peripheral nerve. The MSA patient most commonly has
difficulty with walking, speaking, moving and writing, whereas PAF is normal
except for involvement of the autonomic nervous system. The MSA patient may
also have difficulty with breathing and may have sleep apnea. The outlook
with PAF is very good once orthostatic hypotension is controlled. The
bladder can be involved in both conditions .
Cerebellum
NOUN : The trilobed structure of the brain, lying posterior to the pons and
medulla oblongata and inferior to the occipital lobes of the cerebral
hemispheres, that is responsible for the regulation and coordination of
complex voluntary muscular movement as well as the maintenance of posture
and balance.
----
http://www.albany.net/~tjc/gloss1-c.html#Cerebellum
Cerebellum - Part of the Brain, located above and behind the BrainStem, it
regulates Balance and Coordination of Movements. It has no direct connection
to any specific movement. ex: Posture Imbalance. The Cerebellum has no
ability to re-learn; hence once damaged, it will continue to malfunction.
- Cerebellar disease is evidenced as Complex Motor Dysfunctions: changes in
Speed and Cadence of Speech (Scanning Speech); Willed Movements resemble
Tremor; and Eye Movement abnormalities (Nystagmus, Oscillopsia).
Mild Cerebellar Dysfunction
The inability to judge the range of limb movements, without watching them.
Severe Cerebellar Dysfunction
The inability to perform limb movements smoothly and efficiently, even while
watching them.
Extrapyramidal
ADJECTIVE : Relating to or involving neural pathways situated outside or
independent of the pyramidal tracts.
---
http://www.mhsource.com/expert/exp1083198a.html
Ask the Expert - Extrapyramidal Nervous System
Q. I have read a lot about extrapyramidal side effects and Parkinson's
disease, but can't find a picture of the extrapyramidal nervous system. Can
you give me more information?
A. You are asking a good question, since the term "extrapyramidal" is used a
lot without much understanding of what parts of the nervous system we are
discussing. In the central nervous system, there is a nerve tract or pathway
called the pyramidal tract. This tract, in a part of the brain stem called
the medulla, does have pyramid-like shape, and it houses nerve fibers
running from the cortex (outer layer) of the brain down to the spinal cord.
This "cortico-spinal" pathway controls finely-coordinated voluntary muscle
movements, such as moving your fingers while playing the piano. In a sense,
any nerve pathway outside this pyramidal system is "extra-pyramidal." In
common usage, however, the term extrapyramidal system usually applies to a
group of brain structures beneath the cortex, known as the basal ganglia,
and their associated nerve fibers. This system is involved in largely
non-intentional motor activity, such as maintaining and adjusting posture,
and "gross" motor movements like those of your shoulder or thigh muscles.
Damage to the extrapyramidal tract can result in a general slowing of motor
activity, as seen in Parkinson's, or in muscle rigidity or tremor.
Neuroleptic drugs (such as haloperidol) can also provoke "extrapyramidal
side effects," or EPS.
For more information, see the book Clinical Evaluation of the Nervous System
by J. F. Simpson and K. R. Magee (Little, Brown, 1973).
http://cpmcnet.columbia.edu/news/frontiers/archives/biomed_v4n3_0005.html
Biomedical Frontiers: SPRING/SUMMER 1997, Vol.4, No.3
Special Section: Alzheimer's Research
Extrapyramidal Signs
Many patients with Alzheimer's disease experience not only the well-known
problems of memory loss, but also what are termed extrapyramidal signs.
These physical symptoms, which include tremors, rigidity, and slowness of
movement, resemble the symptoms of Parkinson's disease. In fact, in some
cases, patients with extrapyramidal symptoms do have Parkinson's disease. In
other cases, patients take neuroleptic medicines that cause the side
effects. However, in many instances, the cause of extrapyramidal signs in
patients with Alzheimer's disease is not clear.
In a study published in the March 1997 issue of the Annals of Neurology,
Drs. Yan Liu, Yaakov Stern, Michael Chun, Diane Jacobs, Patricia Yau, and
James Goldman found evidence that could help solve this puzzle. The
researchers first looked at clinical reports for Alzheimer's patients and
controls from CPMC. When they eliminated all cases in which a patient with
Alzheimer's also had Parkinson's disease or was on neuroleptic medications,
they still found 18 patients with Alzheimer's who also had extrapyramidal
symptoms.
The researchers used autopsies to confirm the findings in the Alzheimer's
cases, exploring sections of the substantia nigra and basal ganglia for
pathological changes, since pathology in these areas is known to produce a
variety of extrapyramidal signs. They found that degenerative changes in the
substantia nigra, especially neurofibrillary tangles, correlated with the
presence of extrapyramidal signs before death, says Dr. Liu, staff associate
in the pathology department's neuropathology division. However, the
researchers did not find a decrease in the total number of neurons in the
substantia nigra, as happens in Parkinson's disease and progressive
supranuclear palsy. "This indicates that extrapyramidal signs occur because
the neurons are somehow not functioning correctly," says Dr. Liu.
Patti Dahl,
It sounds as if they are helping your dad now. At least with the orthstatic
hypotension.
Have they given him physical therapy for movement? Have they given him speech
therapy for the swallowing problems? Both have helped people on this list with
MSA (newer name for Shy-Drager). Medicare will pay for both if a doctor
prescribes them.
Take care, Bill and Charlotte Werre
I agree with John. Our PT person has always had Charlotte lifting small weights
(1-3 lbs) and many repetitions. Even the ankle weights were small when she was
doing leg exercises. I got special velcro holders for the weights and we could
add or subtract weights and adjust them from 1-5 lbs.
Take care, Bill and Charlotte
Pleas explain:
1. Pure autonomic dysfunction
2. Extrapyramidal or cerebellar deficits
Greetings Vera!
You wondered:
Okay, this is JUST speculation, based on my own experience. Nothing exact.
However, I note that doing heavy lifting (remember our house move this past
summer) is fairly difficult for me. The same thing that triggers problems
with balance also makes it difficult to lift and hold heavy weight.
Should he lift weights? Sure. But go for endurance ... not strength. So
lift light weights many times, instead of heavy weights a few times. And he
needs to remember to back off long before he gets very tired.
Regards,
=jbf=
John B. Fisher
Donna:
Why wont your doctor send you to somewhere that the insurance will
cover the cost of the exercise with a trainer? Jeez you would think
that he would. If you have the insurance that covers it, he should
want you to use it. Who's side is he on anyway? I'd keep after him to
get you help somewhere that is covered.
Hang in there
Hugs
Vera
Donna, It is good to hear that you can feel better from one year to the next
with this disease. My mom never had even a slight reversal like that. I am
happy for you. Debbie
Debbie White
dwhite@...
This seemed safe, so I thought I would pass this on so the kids could
hear from other parts of the world.
Ann from Soddy, TN
District
1.
in
the
November
1,