The following is from
http://www.jilliansgym.com/latest-infomation-on-msa/
With some minor adjustments in paragraph arrangement.
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TOP TEN THINGS YOU NEED TO KNOW ABOUT MULTIPLE SYSTEM ATROPHY
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These are things not normally highlighted in traditional literature about Multiple System Atrophy. This list was compiled from the collective experience (since 1995) of hundreds of members of the shydrager online support group for MSA founded by Vanderbilt University Autonomic Dysfunction
Center staff and currently hosted at
http://groups.yahoo.com/group/shydrager
1. PREVENT INFECTIONS:
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MSA patients often register a body temperature that is a
degree or more below normal. Because of this a fever may not be detected. Any sudden worsening of symptoms or confusion could be a sign of infection. An even
lower temperature than the normally (MSA) low temperature can also be a sign of infection. Be vigilant about preventing and detecting all types of infections.
Urinary tract (UTI) and lung infections (PNEUMONIA) are very common. Stay well
hydrated (64 oz fluid per day) to prevent urinary tract infections.
Stay dry and shift weight often to prevent skin pressure sores. Swallow carefully, avoid
choking and aspiration. Puree foods when swallowing becomes difficult. Get
speech and swallowing therapy to avoid aspiration pneumonia.
2. WATCH FOR SLEEP AND BREATHING PROBLEMS:
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Sleep and breathing problems are very common in MSA patients. Sleep apnea ( momentary lapses in breathing ), respiratory stridor (noisy breathing), REM behavior disorder (shouting and
acting out dreams) and excessive daytime sleepiness can be among the earliest
symptoms of MSA. Sleep apnea is very serious and can lead to sudden death during sleep. Ask your bed partner if you snore, breathe loudly in your sleep,
talk in your sleep or act out your dreams. Ask to be referred to a sleep specialist for a sleep study, often this can be performed in your own home.
Not getting a good night’s sleep can make other MSA symptoms seem worse both for the patient and the caregiver. Sleep and breathing problems can be easily treated with a CPAP or Bi-Pap – this is a mask with pressurized air worn at
night.
3. BE AWARE OF SITUATIONS THAT CAN AFFECT BLOOD PRESSURE:
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(AA) Blood pressure can DROP suddenly (hypotension):
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(a) After getting up in the morning – drink a large glass of water before getting out of bed to raise your blood pressure.
(b) During a bowel movement – use a foot stool in front of the
toilet to keep blood pressure up.
(c) After a large meal – eat 5 or 6 small meals instead of larger meals
(d) After standing in one place for a long time – sit whenever possible.
(BB) Blood Pressure can SPIKE UPWARD suddenly (hypertension):
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(BB1) When lying flat (supine) during sleep – raise the head of the bed 4 to 6 inches higher than the foot of the bed at night to prevent this.
(BB2) Further note on blood pressure: If a patient’s blood pressure is too high laying down then simply sitting them up can bring it back down.
4. BE CAREFUL OF SURGERY:
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If an MSA patient is to have any surgery, a local
anesthetic should be the preferred choice if possible. If general anesthesia is
necessary, ensure that the anesthesiologist knows that MSA affects the autonomic nervous system. The MSA patient must be well hydrated via IV before and during surgery to maintain a safe blood pressure.
Another note on surgery:
Prostate surgery should only occur if the urologist and neurologist have had a
consultation with each other.
5. BE CAREFUL WITH OVER-THE-COUNTER COLD/FLU/ALLERGY MEDICATIONS:
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Many of these
medications contain pseudoephedrine that can affect the heart and raise blood
pressure, leading to stroke. They also may interact with prescribed medications. Be very careful and consult your doctor before mixing any medications, including over-the-counter remedies or even vitamins.
6. PREVENT FALLS:
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Preventing falls is very important, if you fall and break a bone you may become bedridden and more prone to infections. When it becomes
appropriate, use a cane, walker or wheelchair. Install grab bars in the bathroom, use a raised toilet, use a shower chair or bench, use a hoyer lift
for transfers.
7. AVOID EXTREME HEAT OR COLD:
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MSA can affect the body’s ability to sweat and to maintain a proper core temperature. It’s important to stay cool during hot or humid weather and stay warm during cooler weather. Also avoid very hot baths
and showers.
8. EXERCISE!
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It’s important to maintain strength and flexibility for as long as possible. Do range of motion exercises and any gentle exercise that can be done when sitting. Water exercises are easy to do and very helpful.
Practise speech exercises along with the other exercises to help maintain strength and clarity
of voice for as long as possible. Ask for physical and occupational and speech therapy as these are all known to be beneficial to MSA patients.
9. PREPARE FOR EMERGENCY ROOM VISITS:
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Keep a short description of your medical history, a description of MSA, and your most recent medications list handy so
you can take it with you to any new doctors’ appointments, hand it over in an emergency room, give it to caregivers, etc.
If you are in any of those
situations, it’s much easier to have something pre-prepared, especially if you’re talking to people who have never heard of MSA.
10. BE READY TO ADVOCATE AND TO COORDINATE A TEAM OF DOCTORS:
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Be ready to "advocate” with your doctors, or ask a trusted friend, family member or
caregiver to play this role. MSA is a complex disorder and not every doctor will have heard of it, find a doctor you trust who is willing to learn.
There is literature available and there are known MSA expert neurologists who can
act as consultants. At each appointment try to focus on 1 or 2 concerns to get them addressed adequately. Have a buddy with you who will make sure you’re heard!
Often your general practitioner can help play the coordinator role by referring you to other experts such as a neurologist, internist, cardiologist,
urologist etc.
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