Pam Bower, one of the moderators of the ShyDrager Yahoo!Group, posted about this pamphlet today. I think it’s one of the best documents I’ve seen for laypeople. It’s very similar to the brochure available from the Multiple System Atrophy Trust (UK).
You can find this MSA pamphlet on the Parkinson Society Canada website:
http://www.parkinson.ca/wp-content/uploads/Multiple-System-Atrophy-English.pdf
Pam indicates “This was created with much input from MSA patient Paul Walsh in Toronto. He has lobbied Parkinson Society Canada vehemently to get more resources available for MSA patients and families.”
I’ve copied some of the text below. I encourage you to check-out the link because the layout is nice and there’s a diagram of the brain.
Robin
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Excerpts from:
Multiple System Atrophy
Parkinson Society Canada
First Published 2010 (?)
Multiple System Atrophy falls into the category of Atypical Parkinsonism, or Parkinson plus syndrome, a group of diseases linked to a lack of dopamine in the brain. Dopamine controls movement. While Parkinson’s is the most common Parkinsonism, approximately 20 percent of people will be diagnosed with another Parkinson’s-like condition.
What is Multiple System Atrophy?
Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. This loss causes problems with movement, balance and autonomic functions of the body. (Autonomic functions are body functions that occur automatically, such as bladder control.)
*Terminology
MSA includes conditions that were previously known individually as Shy-Drager syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy. Researchers have learned that there is a common underlying cause in all three disorders, so they are now referred to as MSA.
Who gets MSA?
MSA usually starts between the ages of 50-60 years, although it can affect people younger and older than this. The average age of onset is 54. MSA is a disorder that occurs randomly in the general population and is considered rare (4 – 5 in 100,000). There is a slightly higher incidence in men.
Which parts of the brain are affected in Multiple System Atrophy?
In MSA, cells are damaged in different areas of the brain which control a variety of body functions. The three areas affected are the basal ganglia, cerebellum and brain stem.
In MSA, brain cells in the affected areas shrink (atrophy). This can sometimes be seen on MRI scans. When brain tissue is examined under a microscope, structures called glial inclusion bodies can be seen; they contain a protein called alpha-synuclein. It is the presence of these inclusion bodies in the movement, balance and autonomic control centres of the brain that confirms a diagnosis of MSA.
What are the symptoms of MSA?
Parkinson symptoms – relating to slowness and stiffness of movement
• feeling slow and stiff when moving
• difficulty turning in bed
• difficulty starting to move
• difficulty fastening buttons on a shirt or blouse
Cerebellar symptoms – relating to co-ordinating movement and balance
• feeling clumsy, dropping things
• feeling unsteady in crowds
• inability to balance without support
• difficulty writing
• slurred speech
Autonomic symptoms – relating to automatic body functions
• bladder problems
• erectile dysfunction
• dizziness or fainting (blood pressure problems)
• constipation
• cold hands and feet
• inability to sweat
Other symptoms may include:
• weakness in arms and legs
• heightened emotional response (laughing or crying disproportionate to the situation)
• restless sleep
• nightmares
• noisy breathing during the day, snoring at night
• unintentional sighing
• swallowing problems, difficulty chewing, choking episodes
• weak, quiet voice
• cognitive problems, slowness in thinking, difficulty with multi-tasking
How is Multiple System Atrophy treated?
Currently, there is no treatment to slow the progression of the disease. The complex nature of MSA means you should see a neurologist who specializes in movement disorders. It is important to look at and treat each symptom separately in order to maintain daily activities and quality of life. Often a multidisciplinary team, including a neurologist, social
worker, speech language pathologist, physiotherapist, urologist, clinical nurse and family doctor will be involved.
Suggestions that may be useful for managing symptoms of Multiple System Atrophy
Movement: Drugs to help stiffness and slowness are the same drugs used in Parkinson’s disease. Medications in MSA may be effective for some people and not effective for others.
A drop in blood pressure (orthostatic hypotension): A drop in blood pressure when standing can cause dizziness, lightheadedness, fainting, or blurred vision. It may be treated with drugs that raise blood pressure. Some people find getting up slowly from a chair can reduce fainting spells. Raising the head of the bed can make it easier to get out of bed. Increasing salt in the diet and wearing pressure stockings can also help. It is important to have regular blood pressure checks.
Erectile dysfunction: Medications or penile implants may help with impotence.
Breathing: If you have problems with snoring or sleep apnea (you stop breathing while asleep), you should report this to your doctor. A breathing tube may need to be inserted.
Spasms: Medications may help treat spasms.
Constipation: Increased dietary fiber and plenty of fluids on a daily basis. Taking laxatives may relieve constipation.
Swallowing: To improve swallowing and reduce risk of choking, food may need to be pureed. If swallowing becomes difficult, a tube may be surgically inserted into the stomach.
Muscle coordination: A routine exercise program with stretching, range of movement and strength building is very important. It helps keep muscles strong and allows for safer mobility.
Urinary retention: Medications can reduce urgency and frequency problems, improve tone of bladder muscles or reduce production of urine overnight. You should take care to avoid infection and seek treatment. Consulting a urologist may help.
What do care partners need to know?
If you are a care partner or family member, MSA will affect your life, too. Learn as much as you can. Care partners often believe they will remain healthy and will always able to provide care. However, care partners often burn out and become ill. Take care of yourself. Maintain a healthy lifestyle, including exercise and good nutrition. Consider using community services. Have an emergency plan in case you become ill. Build a network of support.