... MSA ... Multiple System Atrophy ... Please Read

The following is taken directly from PubMedHealth please follow the link to read the full article. I have shortened the article, because I would appreciate it if you took the time to read about the devastating illness my mom has lived with for 18 years now. No one really knows about this disease, often misdiagnosed, and   often assumed to be MS, when the acronyms are said ... please read, so that we can at least spread the awareness of this horrible disease.

I have added some personal comments which I have highlighted.

PubMed Health. A service of the National Library of Medicine, National Institutes of Health.

A.D.A.M. Medical Encyclopedia. Atlanta (GA): A.D.A.M.; 2011.

Multiple system atrophy

Shy-Drager syndrome; Neurologic orthostatic hypotension; Shy-McGee-Drager syndrome; Parkinson's plus syndrome; MSA-P; MSA-C

Last reviewed: November 22, 2010.

Multiple system atrophy (MSA) is a rare condition that causes symptoms similar to Parkinson's disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating. My mom in fact was misdiagnosed with Parkinson's disease initially ... it was devastating when we  learned that my mom had Parkinson's, just imagine when we finally got her real and even more devastating diagnosis.

Causes, incidence, and risk factors

The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60. My mom was 52 when she started feeling her legs were extremely heavy ... her speech was slurred.  It pains me because I think we didn't pay enough attention to her complaints.  Many things were going on at that time ... we just attributed her symptoms to life and its many facets.

Symptoms

MSA damages the nervous system, which can cause the following symptoms:

Changes in facial expression

•   "Mask" appearance to face

•   May be unable to close mouth

•   Reduced ability to show facial expressions

•   Staring

•   Difficulty chewing or swallowing (occasionally) My mom had a tracheotomy 10 years ago as her difficulty swallowing was causing real danger, for she either would choke, or risked having fluid go into her lungs.

•   Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)

•   Dizziness or fainting when standing up or after standing still

•   Frequent falls

•   Impotence

•   Loss of control over bowels or bladder

•   Loss of fine motor skills As my mom's speech became more slurred she used a computer to aid her, then as she continued to lose her fine motor skills her computer was replaced by a board with the alphabet and basic symptoms like happiness, sadness, pain, cold, hot ... this eventually was replaced with questions addressed to my mom in the following fashion:  Mami, if you want to go out look at "x", if you want to stay at home, look at "y". Yes, and today only her eye movement remains as her mode of communication.

•   Difficulty eating My mom now has a feeding tube ... this saddens me, not only because of the condition itself, but also because I think of all the feelings that are conveyed through food.  As I set plates on the table I am filled with joy that I can nurture my family and I am always eager to hear what emotions my creations will evoke. I have to admit this is one of the favorite parts of my day ... cooking for my family and sitting down at the table.  Plates that make me reminisce and remind me of my youth.  My mom has been unable to taste real food in years, with the movement of her hands, with her will. Food evokes pleasure and comfort and my mom has been unable to nurture herself the traditional way ... this is very hard to accept as this is yet another aspect that this brutal illness has robbed her of.

•   Difficulty with any activity that requires small movements

•   Writing that is small and hard to read

•   Loss of sweating in any part of the body

•   Mild decline in mental function (may occur)

•   Movement difficulties

•   Loss of balance

•   Shuffling

•   Walking pattern (gait) changes

•   Muscle aches and pains (myalgia)

•   Muscle rigidity

•   Difficulty bending arms or legs

•   Stiffness

•   Nausea and problems with digestion

•   Posture difficulties: may be unstable, stooped, or slumped over slow movements

•   Difficulty beginning to walk or starting any voluntary movement

•  Freezing of movement when the movement is stopped, unable to start moving again

•   Small steps followed by the need to run to keep balance

Tremors 

•   May become severe enough to interfere with activities

•   May be worse when tired, excited, or stressed

•   May occur at rest or at any time

•   May occur with any action, such as holding a cup or other eating utensils

•   Finger-thumb rubbing (pill rolling tremor)

•   Vision changes, decreased or blurred vision

•   Voice and speech changes

•   Difficulty speaking

•   Monotone

•   Slow speaking

•   Voice is low volume

Other symptoms that may occur with this disease:

•   Confusion

•   Dementia

•   Depression

•   Sleep-related breathing difficulties, especially sleep apnea or a blockage

in the air passage that leads to a harsh vibrating sound

Treatment

There is no cure for MSA, and there is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.

Expectations (prognosis)

The outcome is poor. Loss of mental and physical functions slowly get worse. . Early death is likely. The typical survival time from the time of diagnosis is 7 to 9 years. My mom has lived with the disease with 18 years. It is a progressive disease, so at first the symptoms were uneven, sometimes my mom would be feeling better and her speech was comprehensible, sometimes her hands would be stiff and sometimes stillness would be replaced with a tremor. Her walk was difficult at times, but she needed only support, then she went to a walker, that was then replaced with a motorized bike ... we called it ... my mom never learned how to drive and believe me when she was on that things ... everyone better move ... lets say she was not the best driver ... :) ... sadly, this was replaced with a wheel chair, and that is what she is in today.

Complications

•   Progressive loss of ability to walk or care for self A nurse is now needed 24/7/365.  Unfortunately, my mom can no longer care for herself in any way.  It is difficult to see my mother, who had such a strong character be reduced this way by this illness.

•   Difficulty performing daily activities

•   Injuries from falls/fainting

•   Side effects of medications

Tomorrow ... October 3rd is the first MSA World MSA Day ... so if you can run or walk a mile for MSA, light a candle for MSA at 8:00 PM your local time.  

This is a post from: http://www.msaawareness.org/

Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

The population of the Earth is estimated to be 6,952,785,870 (as of August 1,
2011). This means that statistically we can estimate that worldwide 347.635*
people may be affected with MSA at this time. (*5 cases per 100,000)

We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

A Candle:
You can light your candle at home alone, or with friends and family, or during
your local activity that is planned for World MSA Day.

As candles are lit around the globe, a virtual 24-hour wave of light will be
created as it moves from time zone to time zone. Please light your candles at
20:00 hrs / 8 p.m. in your local time zone for one hour.

The flame of the candles will unite family and friends all over the world and
bring awareness to MSA. 

A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every
kilometer or mile we will count together. The goal is to attempt to walk around
the earth (40,075.16 kilometers or 24,901.55 miles around the Earth at the
equator).

Let’s see how far we come this year.
Send in your mileage to be tallied. 

A Mile and A Candle… please do as much as you are able to do, each step, each
inch or centimeter is a start for the 40,75.16 kilometers or 24,901.55 miles
needed. Each single candle counts toward the 347.635* needed.

Thanks to all who are willing to create awareness for MSA.

Thank you for taking the time to read, to learn, to be aware.  Thank you  for your support, for awareness brings action. Thank you for your time, so that others like my mom who have lost their independence and their normal existence to this illness, don't feel forgotten or even more helpless than what they feel today, before an disease that has manage to outsmart our scientists.  May research find the cure to this and the other horrible diseases that plague our world and impact lives of our loved ones, and our lives with them.

A dopo ... J