If Anyone Is Interested, M.S.A.; A Terrible Disease
For those of you who follow me I thought maybe you would like to know a little bit about M.S.A.…
Tears and hearts
They come in pairs
They can bring laughter
Or grave despair
Reflections seen through your eyes
Gives depth of your deep thoughts
I don’t have much to offer you
But my dear you can have all I got
When I saw you standing over there
I knew you were trying to hide
But it’s ok for you to show
We all have different sides
My love I promised you long ago
I would remain through thick and thin
And now my darling I see your tears
Please, don’t be shy, just let me in
Tomorrow will be a brand new day
I promise we shall get through this
Let me help you let me hold you
Let me seal my promise with a kiss.
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a blogging friend wrote a story about a Coach with M.S.A.
It is so beautiful I had to share it with you
Get to know Gary Brown
Profession: Field manager at RG&E.
Family: Wife of 21 years, Mary. Sons Max, 19; Mackenzie, 17; and Michael, 12. Mother-in-law, Rita Clark.
Hobbies: Boating, fishing, hunting.
Brown’s advice for…
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For those of you who follow me I thought maybe you would like to know a little bit about M.S.A. This illness is what my brother, Al has. It is not a fun disease, as most aren’t. This disease shortens the life by years and affects so much of the body.
I have spoken about it but it is a rare disease, so I thought I would share with you what I have learned.
Multiple system atrophy
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.
The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60.
MSA damages the nervous system. Symptoms can include:
- Face changes
- “Mask” appearance to face
- May be unable to close mouth
- Reduced ability to show facial expressions
- Difficulty chewing or swallowing (occasionally)
- 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
- Loss of control over bowels or bladder
- Loss of fine motor skills
- Difficulty eating
- 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
- Movement difficulties
- Muscle aches and pains (myalgia)
- Muscle rigidity
- Difficulty bending arms or legs
- 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
- 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
- Slow speaking
- Voice is low volume
Other symptoms that may occur with this disease:
- Sleep-related breathing difficulties, especially sleep apnea or a blockage in the air passage that leads to a harsh vibrating sound
Exams and Tests
Your doctor or nurse will examine you, and check your eyes, nerves, and muscles.
Your blood pressure will be taken while you are lying down and standing up.
There are no specific tests to confirm this disease. A neurologist can make the diagnosis based on:
- History of symptoms
- Physical examination results
- Ruling out other causes of symptoms
Testing to help confirm the diagnosis may include:
- MRI of head
- Plasma norepinephrine levels
- Urine examination for norepinephrine breakdown products (urine catecholamines)
There is no cure for MSA. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.
Anticholinergic medications may be used to reduce early or mild tremors. Levodopa may improve movement and balance.
Carbidopa is usually added to Levodopa to reduce its side effects and make it work better. However, for people with MSA the response to medications may be disappointing. Many people respond poorly to treatment with anticholinergics or Levodopa.
Medications that may be used to treat low blood pressure include:
- Fludrocortisone (Florinef)
- MAO inhibitors
- Vasoconstrictors (midodrine)
A pacemaker that is programmed to stimulate the heart to beat at a rapid rate (faster than 100 beats per minute) may increase blood pressure for some people.
Constipation can be treated with a high-fiber diet and laxatives. Medicines are available to treat impotence.
The outcome is poor. Loss of mental and physical functions slowly get worse. Early death is likely. Patients typically live 7 to 9 years after diagnosis.
- Progressive loss of ability to walk or care for self
- Difficulty performing daily activities
- Injuries from falls/fainting
- Side effects of medications
When to Contact a Medical Professional
Call your health care provider if you develop symptoms of this disorder.
Call your health care provider if you have been diagnosed with MSA and your symptoms return or get worse. Also call if new symptoms appear, including possible side effects of medications:
- Changes in alertness/behavior/mood
- Delusional behavior
- Involuntary movements
- Loss of mental functioning
- Severe confusion or disorientation
Rain, rain get the crap out of here. You are driving me crazy. Last night I accidentally knocked over the glass sugar shaker and shattered it into a million slivers and of course the sugar just had to go down into the stove and around the burners. This was a real nice mess to clean up.
This morning, I woke up way before I had to. I wanted to sleep but could not. Now in the late afternoon I am ready for a nap and I can not. I have to start supper.
I had to go to the grocery store plus I thought I was going to have to go pick up medications for Al. I also had an appointment with the Hospice nurse. I decided to get the groceries checked off my list. Two things I wanted could not be found. Then I spent $20.00 over what I wanted to spend.
On my way home from the grocery store it started pouring, so I got to carry the bags in with no umbrella. I also had a phone call from some people working on Al’s side. They wanted a list of Al’s medications. Sorry, I don’t carry them with me.
Once home I dried off then put the groceries a way. While I am doing this, Rhino, the cat, is going crazy because I left him here all alone so he was under my feet meowing constantly for attention. When I was finished with that I realized I had forgotten the new sugar shaker jar.
Then the phone rang. It was the pharmacy letting me know I could not get Al’s medications until next week. I checked while on the phone the date she said on the calendar and realized I had called it in too early, sorry Pharmacist.
Then a package that I had expected last week did not arrive. So today with looking like a slob in real clothing the doorbell rings and a stranger is standing there with a box. She ask if I am me and I said yes. She had been on vacation so my box had been sitting at her door. Well this is good, at least I got my box. Thanks Jo.
The cat isn’t happy with five minutes of petting, he wants more, so he is still meowing.
I had bought some sweet treats fresh from the bakery for a meeting that will be held here tomorrow. I receive a phone call stating the meeting has been changed to Wednesday. I wonder if I will still have those treats here once Al gets a whiff of them. He has turned in to a real sugar lover. I may have to hide them.
It is still raining. The fair is going on but it is raining. Does that during the fair each year. Oh well, I am too afraid to ride the rides anymore. Plus I don’t really want to walk through the animal barns and sniff pig, horse and cow crap.
Well, I have to get supper going now, so my free time is over for this day.
Aren’t Mondays just the coolest ever!!!! Not!
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