Living with Multiple System Atrophy Disease
My name is Dave Dennis from Weimar, Texas. I have been diagnosed with Probable Multiple System Atrophy w/Orthostatic Hypotension. (Also called Parkinson's Plus disease) Prognosis of Multiple System Atrophy disease is 6-10 years to live with only 20% survival rate after 12 years. This site is used for awareness and advice. I am also hearing impaired with tinnitus caused by temporal lobe brain atrophy. I am married to a very loving wife Valerie, and 5 of the greatest children, and 2 grandchildren. Make yourself at home and enjoy my website!! Together we can make a difference!!!
Multiple System Atrophy Symptoms better explained:
Changes in facial expression
"Mask" appearance to face
May be unable to close mouth
Reduced ability to show facial expressions
Difficulty chewing or swallowing
Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
Dizziness or fainting when standing up or after standing still
Loss of control over bowels or bladder
Loss of fine motor skills
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)
Loss of balance
Walking pattern (gait) changes
Muscle aches and pains (myalgia)
Difficulty bending arms or legs
Nausea and problems with digestion
Posture difficulties: may be unstable, stooped, or slumped over
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
Voice is low volume
Other symptoms that may occur with this disease:
Sleep-related breathing difficulties, especially sleep apnea and a blockage in the air passage that leads to a harsh vibrating sound
NOW TO TAKE IN MY STORY WHEN MSA TOOK OVER ME:
Changing My Living With Multiple System Atrophy (MSA):
By David S. Dennis
I want to begin by explaining the difficulty most Multiple System Atrophy patients go through is obtaining a true diagnosis. Truly, I can't count on two hands how many MSA patients write to me that it took longer than a year to get a diagnosis, and some folks longer than 2 years. Many doctors have never heard of MSA. And many diagnostic test equipment such as CT, and MRI don't always recognize MSA. Often those tests are used to rule out other diseases. So, for many of us the uphill battle is getting the diagnosis. In my situation it took 7 long months to get a diagnosis. The first Neurologist specialist thought it was Parkinson's Disease. But he also told us he wasn't sure. With that said we wanted a second opinion. As more time is wasted doctors start agreeing with previous doctors thus making it very difficult on family as well as yourself. The PET scan really showed the Neurologist Specialist who was on hand the details he needed to confirm a probable diagnosis. Now, to take this all in.
For my family the news of the prognosis of MSA meant big changes. All our plans we made and dreamed about had to be adjusted. Now with three children out of school it depended on their help to move us out of the country, which I really enjoyed so much. I also gave up driving immediately mainly due to my slow reflexes, and slow coordination. The correct thing to do for the safety of others as well as myself. I have 2 boys still in school. Dylan in now 12 years old and in grade 7 in junior high, and Shawn is now a Senior in high school now. (2015) So this required us to move within walking distance of their school, while my dear wife works her 4am-4pm shift 6 days a week at the UTEX factory here in Weimar, Texas.
My wife is my caregiver. The role my caregiver has now is a huge change in our life. I was the main source of income for more than 25 years working upper management with Wal-Mart Stores Inc., and suddenly without much warning the weight was shifted on my wife's shoulders. I suddenly found myself needing so much help and attention. My income was sliced in thirds of what I was making, even with 2 eligible children of supplemental income. My wife found herself working the 54 + hours a week that I worked the last 25+ years. At such a high risk of getting hurt, short term memory problems, and loss of most all hearing from temporal lobe atrophy, I was forced out of my job with Wal-Mart Stores, Inc..
We applied for Social Security and were approved in less than 4 weeks with all the medical information my wife accumulated together in binders. The lady from Social Security taking our information told me, "Mr. Dennis I don't know what kind of work you did, but you have paid a ton into Social Security." Social Security subtracts the first 6 months from your onset date before they start the 2 year wait to get medicare. So my life has taken a huge turn financially due to the diagnosis of Multiple System Atrophy with major income loss, and in the beginning that nice 2 year wait for my medicare. (Things have changed now where Multiple System Atrophy is pretty much a automatic approval for Social Security process.) However, that just pertains to the approval of social security and not the 2 year wait.
As far as my daily routine change in my life it is important to remember there's no such thing as rushing. Unfortunately, I have one speed...slow. With a very near total loss of hearing there is no alarm clock to wake me up. So my wife wakes me up almost every day before 4:00am. I have a routine despite some loses of abilities. I sleep in a full-size orthopedic bed that reclines to help regulate my blood pressure. I slowly sit up, try to move my feet and legs around, and slowly stand up. I keep cold bottled water at my bedside which also helps raise my blood pressure. So long to waking up, jumping out of bed, shave, shower, get dressed, and jump in my vehicle off to work. I had to give up driving almost immediately in 2007 due to lack of leg reflexes. And now I have a machine that feeds me through my feeding tube every night to deal with. **As of August 2013 I have a Ileostomy bag along with supra pubic catheter urine bag. Going to the restroom in the middle of night a couple times each night pulling my feeding rack, and dealing with keeping 2 bags emptied is sometime a huge challenge. **
First thing I do is take my morning regiment of pills which are always accessible and out of reach of my grandchildren. I have to crush my medications and insert in my G-Tube feeding tube. My clothes are easily accessible, however, my thinking is usually slow causing extra trips due to short term memory problems. Many times I have to pick out clothes the night before just to assure I won't need to make extra trips back and forth from the bathroom to the bedroom. Anyway, I gather my clothes. Due to having a Ileostomy my shower is taken every 5-7 days. My shower is taken in a seat to prevent blood pressure hypotension type issues. Adjusting the correct temperature sometimes takes a little extra time with me. Hot water of course can open your pores and trigger hypotension issues. After my shower I move to the sink and shave. With a right hand tremor I must take my time shaving. When finished I head back to the bedroom. On my best days my getting up, shower, shave, and dressing take nearly an hour. (Even days I don't shower I wash myself with a hand cloth.)
In the beginning when we moved to the city limits of Weimar in early 2008 on school days my youngest daughter was at Weimar High School and helped me with getting the boys off to school. Like my wife, my daughter came home from school at lunch and checked up on me. I was able to fix myself oatmeal for breakfast and take my medications also at that time of the disease. I had to eat soft foods for easy swallowing as my swallowing was getting worse. ***(As of 2011 my swallowing got so bad I had to have 2 feeding tubes put in place.) Once I am finished with breakfast I usually pick a chore that so far I'm still able to do. Usually, I try to at least sweep the kitchen and dinning room floor and mop. Trust me this takes me a while, but I do a pretty swell job. A lot of times I gather a load of laundry, and assure all dishes are washed. Anything to help my dear wife who now holds the additional title of caregiver. I try to do what I can to help her as I know down the road she will give it all back to me.
I try to take an hour or so of computer time in the late morning to communicate with my support group friends unless home health or therapy folks are on there way to our home. And then head to the bedroom to lay down and rest again. Often it is close to 11am. No two days are alike as medications can make me tired quickly on some days. I usually watch t.v. and wait for my wife to come home for lunch at noon. At noon again I take medication all over again for orthostatic hypotension, urinary retention,Parkinsonism symptoms, anxiety/depression, acid reflux, memory, etc.. In 2011 I finally had to have surgery to place a feeding tube in my small intestine since I was unable to swallow. All my medications are taken via my feeding tube, and I have a machine with Vital 1.5 formula to run 12 hours a night to feed me. Due to GERD Disease I had to have a Nissen Fundoplication w/ Hiatal Hernia mesh repair surgery performed as stomach acid was refluxing upward.
In the afternoon I find time to exercise using my sheets supplied by my physical and occupational therapy support teams. **In 2012 we purchased a Total Gym for working out in my home gym. ** Again, I enjoy checking on my computer on my MSA support groups and friends and of course Facebook. This is mainly my only communication since my hearing is all silent. I mainly have to stay indoors unless someone is home to watch me outside. Falls seem to happen almost on weekly/monthly basis and staying out of public eye seems to work best until I can afford a scooter or wheelchair.
**As of 2013 I have gotten used to my balance problems enough to only use my cane on a part-time basis. PT folks deserve most all the credit. I just wish Home Health could extend the amount of therapy to be given when improvement is slow. I have learned that medicare is popular in doing this to many disabled patients. **
The evening is spent with family who want to watch what I'm watching on t.v.. During sports time of the year I'm able to get out of the house and watch my youngest boys play sports. Living with Multiple System Atrophy has taken the things I used to do with ease. Getting out to hunt or fish, or hang out with friends doesn't happen so much now. We do not know what MSA will continue to do, but our lives are emotionally torn between the life we had so dreamt we would be living, and what we now have been dealt. My focus is and always will be one day at a time. Have faith and daily prayer for myself, my family, and all my MSA support group patients and families. Here is a list of my diagnosed symptoms of MSA. For folks who do not know everything I've gone through I now have had 23 surgical procedures that have been performed on me in the last 4 years. Colon resection and gallbladder were performed together and was a 5 hour surgery which generated the biggest problem with having MSA. In July, 2013 I had to have a Ileostomy surgery performed as constipation was a huge concern. Surgical problems were associated with blood pressures jumping all over the place during the wear off time. At one time I was Stage 3 220/140 blood pressure. MSA disease and surgery is very dangerous.
RESULTS FROM MULTIPLE SYSTEM ATROPHY DISEASE SO FAR: 06/18/2015
DAVID S. DENNIS
ICD-9 CODES: PROBLEM: STATUS: DATE DIAGNOSED:07/05/2007
333.0 MULTIPLE SYSTEM ATROPHY CHRONIC 01/18/2008
332.0 PARKINSON'S DISEASE CHRONIC 07/05/2007
337.9 DYSAUTONOMIA CHRONIC 01/18/2008
388.31 TINNITUS CHRONIC 09/21/2007
458.0 ORTHOSTATIC HYPOTENSION CHRONIC 07/05/2007
473.0 MAXILLARY SINUSITIS CHRONIC 09/21/2007
493.0 EXTRINSIC ASTHMA CHRONIC 12/16/2013
724.3 SCIATICA BACK PAIN CHRONIC 07/05/2007
724.2 LOWER BACK PAIN CHRONIC 07/05/2007
788.20 URINARY RETENTION CHRONIC 07/05/2007
373.01 ULCERATIVE BLEPHARITIS ACTIVE 12/27/2012
784.51 ATAXIC DYSARTHRIA CHRONIC 10/15/2010
787.29 DYSPHAGIA CHRONIC 08/26/2011
934.90 ASPIRATION CHRONIC 11/14/2011
527.7 XEROSTOMIA CHRONIC 09/15/2010
530.5 ESOPHAGEAL SPASM CHRONIC 09/15/2010
596.54 NEUROGENIC BLADDER PARALYSIS ACTIVE 04/15/2011
596.8 BLADDER SPASM ACTIVE 04/15/2011
599.71 GROSS HEMATURIA ACTIVE 07/19/2011
600.01 HYPERTROPHY (LUTS) ACTIVE 08/13/2010
V13.09 HISTORY OF RECURRENT UTI CHRONIC 12/16/2010
365.01 OPEN ANGLE GLAUCOMA ACTIVE 07/15/2010
780.89 WEAKNESS ACTIVE 01/12/2012
729.89 RIGHT LEG WEAKNESS ACTIVE 07/05/2007
780.97 ALTERED MENTAL STATUS CHRONIC 02/06/2014
780.97 ANXIETY ACTIVE 01/06/2012
276.1 HYPONATREMIA ACTIVE 01/06/2012
786.9 DYSPNEA ACTIVE 01/21/2012
491.21 CHRONIC BRONCHITIS ACTIVE 01/26/2012
J44.9 CHRONIC OBSTRUCTIVE (COPD) CHRONIC 04/30/2012
780.57 OBSTUCTIVE SLEEP APNEA ACTIVE 05/14/2012
E885.9 FALL FROM SLIPPING, TRIP ACTIVE 04/25/2012
785.1 PALPITATIONS ACTIVE 04/25/2012
333.94 RESTLESS LEGS SYNDROME ACTIVE 09/10/2012
327.42 REM SLEEP BEHAVIOR DISORDER ACTIVE 09/10/2012
788.1 DYSURIA ACTIVE 11/14/2013
276.51 DEHYDRATION CHRONIC 09/04/2013
729.5 ARM PAIN (CARPAL TUNNEL) CHRONIC 09/18/2014
729.81 MUSCLE WEAKNESS CHRONIC 09/18/2014
682.2 ABDOMINAL WALL CELLULITIS CHRONIC 10/09/2014
995.91 SEPSIS ACTIVE 03/12/2014
780.79 FATIGUE ACTIVE 11/13/2014
780.09 DROWSINESS ACTIVE 07/28/2014
786.51 CHEST PAIN ACTIVE 08/22/2014
786.50 RIB PAIN ACTIVE 08/22/2014
780.97 ALTERED MENTAL STATUS CHRONIC 08/11/2014
599.0 URINARY TRACT INFECTION CHRONIC 07/14/2007
268.9 VITAMIN D DEFICIENCY CHRONIC 01/09/2014
786.05 SHORTNESS OF BREATH (SOB) ACTIVE 03/05/2013
723.1 NECK PAIN ACTIVE 02/19/2008
493.00 EXTRINSIC ASTHMA ACTIVE 12/16/2013
783.21 LOSS OF WEIGHT ACTIVE 12/23/2011
POTASSIUM CHLORIDE 30 MEQ BID
LOMOTIL 2.5/0.025MG PER 5ML 2X/DAILY
CLONAZEPAM 1MG BID
FLEXERIL 10MG TID
PANTOPRAZOLE 40MG DAILY @ 3PM
FLORINEF 0.1MG TID
HYDROCODONE 5MG/325MG 1-2 Q 4 HOURS
FENTANYL 100MCG/1HR 72 HOUR CHANGE OUT (3 DAYS)
REGLAN 5MG TID
METOCLOPRAMIDE 5MG QID
ATROVENT 0.02% HAND HELD NEB Q 4 HOURS
ALBUTEROL 0.83% HAND HELD NEB Q 4-6 HOURS
EFFEXOR 75MG BID
PREDNISONE 20MG 1X DAILY
ZYRTEC 10MG 1X DAILY
FLUCONAZOLE 100MG 1X DAILY
SINEMET-CR 50MG/200MG TID
COGENTIN 1MG BID
ARICEPT 10MG 1X DAILY
FLONASE 50MCG/1ACTUATION 2X DAILY
PATADAY 0.2% BID
VESIcare 10MG 1XDAILY
ADVAIR DISKUS 500/50 2X DAILY
JEVITY 1.5 CAL (1.1 QT 12 HOUR/NIGHT FEED
Newest Multiple System Atrophy diagnosis criteria:
Subject: MSA Diagnostic Criteria Updated:
The criteria for diagnosis of multiple system atrophy have been updated following the second consensus conference on the topic. Criteria are offered for definite, probable, and possible MSA, and for distinguishing MSA with predominant parkinsonism (MSA-P) from MSA with predominant cerebellar ataxia (MSA-C). According to the criteria:
Definite MSA :
Requires neuropathologic finding of widespread and abundant central nervous system glial cytoplasmic inclusions that are positive for alpha-synuclein, in association with neurodegeneration in striatonigral or olivopontocerebellar structures.
Probable MSA :
A sporadic, progressive adult-onset (after age 30) disease characterized by:
--Autonomic failure involving urinary incontinence plus erectile dysfunction in males, or an orthostatic decrease of blood pressure within 3 minutes of standing by at least 30 mm Hg systolic or 15 mm Hg diastolic, and
--Poorly levodopa-responsive parkinsonism (bradykinesia with rigidity, tremor, or postural instability) or
--A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb ataxia, or cerebellar oculomotor dysfunction
Possible MSA :
A sporadic, progressive adult-onset (after age 30) disease characterized by:
--A cerebellar syndrome, and
--At least one feature suggesting autonomic dysfunction (otherwise unexplained urinary urgency, frequency, or incomplete bladder emptying, erectile dysfunction in males, or significant orthostatic hypotension decline that does not meet the level requires in probable MSA, and
--at least 1 additional feature from the Table.
Possible MSA-P or MSA-C
Babinski sign with hyperreflexia
Rapidly progressive parkinsonism
Poor response to levodopa
Postural instability within 3 years of motor onset
Gait ataxia with cerebellar dysarthria, limb ataxia, or cerebellar oculomotor dysfunction
Dysphagia within 5 years of motor onset
Atrophy on MRI of putamen, middle cerebellar peduncle, pons, or cerebellum
Hypometabolism on FDG-PET in putamen, brainstem, or cerebellum
Atrophy on MRI of putamen, middle
BACKGROUND: A consensus conference on multiple system atrophy (MSA) in 1998 established criteria for diagnosis that have been accepted widely. Since then, clinical, laboratory, neuropathologic, and imaging studies have advanced the field, requiring a fresh evaluation of diagnostic criteria. We held a second consensus conference in 2007 and present the results here. METHODS: Experts in the clinical, neuropathologic, and imaging aspects of MSA were invited to participate in a 2-day consensus conference. Participants were divided into five groups, consisting of specialists in the parkinsonian, cerebellar, autonomic, neuropathologic, and imaging aspects of the disorder. Each group independently wrote diagnostic criteria for its area of expertise in advance of the meeting. These criteria were discussed and reconciled during the meeting using consensus methodology. RESULTS: The new criteria retain the diagnostic categories of MSA with predominant parkinsonism and MSA with predominant cerebellar ataxia to designate the predominant motor features and also retain the designations of definite, probable, and possible MSA. Definite MSA requires neuropathologic demonstration of CNS alpha-synuclein-positive glial cytoplasmic inclusions with neurodegenerative changes in striatonigral or olivopontocerebellar structures. Probable MSA requires a sporadic, progressive adult-onset disorder including rigorously defined autonomic failure and poorly levodopa-responsive parkinsonism or cerebellar ataxia. Possible MSA requires a sporadic, progressive adult-onset disease including parkinsonism or cerebellar ataxia and at least one feature suggesting autonomic dysfunction plus one other feature that may be a clinical or a neuroimaging abnormality. CONCLUSIONS: These new criteria have simplified the previous criteria, have incorporated current knowledge, and are expected to enhance future assessments of the disease.
"Table 1 Criteria for the diagnosis of probable MSA
A sporadic, progressive, adult (>30 y).onset disease characterized by
* Autonomic failure involving urinary incontinence (inability to
control the release of urine from the bladder, with erectile
dysfunction in males) or an orthostatic decrease of blood pressure
within 3 min of standing by at least 30 mm Hg systolic or 15
mm Hg diastolic and
* Poorly levodopa-responsive parkinsonism (bradykinesia with
rigidity, tremor, or postural instability) or
* A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb
ataxia, or cerebellar oculomotor dysfunction)"
"Table 2 Criteria for possible MSA
A sporadic, progressive, adult (>30 y).onset disease characterized by
* Parkinsonism (bradykinesia with rigidity, tremor, or postural
* A cerebellar syndrome (gait ataxia with cerebellar dysarthria, limb
ataxia, or cerebellar oculomotor dysfunction) and
* At least one feature suggesting autonomic dysfunction (otherwise
unexplained urinary urgency, frequency or incomplete bladder
emptying, erectile dysfunction in males, or significant orthostatic
blood pressure decline that does not meet the level required in
probable MSA) and
* At least one of the additional features shown in table 3"
"Table 3 Additional features of possible MSA
Possible MSA-P or MSA-C
* Babinski sign with hyperreflexia
* Rapidly progressive parkinsonism
* Poor response to levodopa
* Postural instability within 3 y of motor onset
* Gait ataxia, cerebellar dysarthria, limb ataxia, or cerebellar
* Dysphagia within 5 y of motor onset
* Atrophy on MRI of putamen, middle cerebellar peduncle, pons, or
* Hypometabolism on FDG-PET in putamen, brainstem, or cerebellum
* Parkinsonism (bradykinesia and rigidity)
* Atrophy on MRI of putamen, middle cerebellar peduncle, or pons
* Hypometabolism on FDG-PET in putamen
* Presynaptic nigrostriatal dopaminergic denervation on SPECT or PET
MSA = multiple system atrophy; MSA-P = MSA with predominant
MSA-C = MSA with predominant cerebellar ataxia; FDG = [18F]
Table 4 Features supporting (red flags) and not supporting a
diagnosis of MSA
* Orofacial dystonia
* Disproportionate antecollis
* Camptocormia (severe anterior flexion of the spine) and/or Pisa
syndrome (severe lateral flexion of the spine)
* Contractures of hands or feet
* Inspiratory sighs
* Severe dysphonia
* Severe dysarthria
* New or increased snoring
* Cold hands and feet
* Pathologic laughter or crying
* Jerky, myoclonic postural/action tremor
* Classic pill-rolling rest tremor
* Clinically significant neuropathy
* Hallucinations not induced by drugs
* Onset after age 75 y
* Family history of ataxia or parkinsonism
* Dementia (on DSM-IV)
* White matter lesions suggesting multiple sclerosis
MSA = multiple system atrophy; DSM-IV = Diagnostic and Statistical
Manual of Mental
Disorders, Fourth Edition."
What are the differences between this revised criteria ('08, second
consensus) and the previous criteria ('98, first consensus)? I don't
know if anyone remembers but the '98 criteria had fairly elaborate
tables of things called "features" and "criteria." Fortunately
that's been left behind in the revised criteria.
For probable MSA, the criteria are simplified. This
diagnosis "requires a reduction of systolic blood pressure by at
least 30 mm Hg or of diastolic blood pressure by at least 15 mm Hg
after 3 minutes of standing from a previous 3-minute interval in the
recumbent position. ... (T)his is a more pronounced decrease of blood
pressure than recommended previously in the American Autonomic
Society (AAS)-AAN consensus statement on the definition of
orthostatic hypotension. ... This is to ensure a high level of
accuracy in the diagnosis of MSA, because the disease is a grave one
and carries the prognosis of a markedly shortened life span."
For possible MSA, the criteria are simplified and "has been changed
to require at least one feature suggesting autonomic dysfunction in
addition to parkinsonism or a cerebellar syndrome. ... This change,
particularly the requirement of a feature suggesting autonomic
dysfunction, hopefully will decrease the false positives that
characterize clinical diagnosis in the early stages of the
disorder." For possible MSA, "it is possible now to use both
clinical and imaging results to buttress the diagnosis in subjects
with parkinsonian features or cerebellar dysfunction plus autonomic
symptoms that do not meet the level needed for the diagnosis of
SPEAKING AND SWALLOWING:
Another early on symptom I noticed just before my diagnosis was speaking and swallowing problems. Changes in the ability to speak and communicate may often occur in people who have multiple system atrophy disease (MSA). And these changes often result in social isolation and social withdrawal. To myself and many others this is very debilitating MSA symptom. Like in Parkinson disease (PD) it is often a early symptom of our disease. Dysarthria is our medical term used to describe the impairment of speech production and swallowing.
As we understand with MSA many features are affected in relationship to breathing, voice production, richness and clarity of speech. Disruptions to breathing, voice, speech and swallowing are caused by movement of muscles which are slower and weaker. Usually muscles of lips, throat, tongue, voice box, and lungs are affected. Results often are reduced loudness, monotone voice, short rushes of speech, and hoarse voice in my case. Sound at all familiar?
Well many of the same muscles that are used to produce speech are used for eating and swallowing. Excessive saliva production, drooling and hearing impairment are also concerns that greatly have an effect on communication. I am hearing impaired. Poor hearing seriously interferes with communication interaction. Why do I bring hearing up? Well, first I don't realize how soft of loud my voice is coming out. So this type of impairment greatly interferes with communication. And the fact that I'm giving my all to get every word out suddenly become a huge frustration when I often have to repeat myself. So what can we do?
First, let all your doctors understand that they work for you. I don't know how many times my doctor was standing up and heading for the door asking if we had any questions. Ask my wife and she will tell you, "I've sat them right back down." It's ashame that we all wait forever to gain a diagnosis and then they are running for the door for that next patient. So now that you've gotten their attention ask them who they recommend for a speech-language pathologist (SLP).
A SLP is certified by the American Speech-Language and Hearing Association (ASHA). Improvement in communication skills and swallowing and speech functions are primary roles of SLP health care professionals. Usually your local hospital centers employ SLP's to help provide inpatient and outpatient services. Also try www.asha.org. A speech pathologist can provide detailed information about changes that have occurred in speech, voice and swallowing as our disease progresses, and can provide solutions of treatment to our neurologist. This information can help with our speech, voice, swallowing type problems that we experience. Many speech therapist also work with cognition which I have found is a huge benefit of help for me. I challenge folks to ask questions to gain a speech therapist as they are often very helpful for MSA patients.
UPDATE : AUGUST 15, 2012***********
*******I am now starting my 5th year fighting Multiple System Atrophy (MSA) I have lost ALL swallowing and have 2 feeding tubeS in place to feed myself. 1500 cal of 1.5 Jevity by machine 12 hours a night is my current treatment. This regiment took months to get correct as many of us feeding tube patients know we have to record residual amounts until we can get the correct regiment that our digestive system can handle. Besides recording residual it was important to keep track of my weight. 5 years ago I was 6'2" 215lbs., now I am 152lbs. and was as low as 142lbs. In my 5 years of swallowing problems I started with taking the modified barium swallow, regular barium swallow, and the best swallowing test in my opinion the Esophagael Manometry Test. There was no longer questions of any of my swallowing problems after the Esophagael Manometry test. For the nearly one hour it takes to take this test there was not one single swallow recorded at all. My esophageal muscles have stopped working and the only way I get anything in my stomach is by gravity. I can basically drink water or a sports drink. Speech Therapy is probably the most important therapy I have that helps me with my disease. I am lucky to have an awesome therapist who also helps with my cognition and memory issues. *******
UPDATE: JULY, 2013*************
*******Now starting my 6th year fighting Multiple System Atrophy (MSA) type symptoms, and 5 1/2 years after diagnosis, I have exhausted every surgical procedure to counter MSA strikes. I am waiting for surgery news for my next surgery which will include getting a Ileostomy. Constipation has been a problem that won't go away. Colon Resection surgery helped me for about a year and a half. But all signals and muscle control have been blocked to empty my colon of body waste. Ileostomy is my next option which the procedure will be performed 7/30/2013. **
UPDATE: DECEMBER, 2013*****
*******Ileostomy surgery has worked out excellent. After surgery, and 9 days hospitalization along with 21 days of rehab for ileostomy training, all is well. The choices were few but necessary to have this procedure. Many MSA patients report constipation problems. Some worse than others. Bladder problems often run side by side with the constipation problems. January 2014 I will start the New Year with yet another surgery. Supra Pubic Catheter procedure is going to be performed as I have exhausted self catheter as long as tolerated. I went through having a foley until I was hospitalized every other month. Home Health taught me self catheter which has been working until a few months ago. With tremors and pain my choice for surgery was an easy choice. However, with so many procedures performed within the last 4 years the fear is being under that worries me and my family.
UPDATE: FEBRUARY, 2014 WARNING...NEAR DEATH ISSUE CAUSED BY A NURSE. 6 DAYS ICU-RAPID RESPONSE TEAM, ETC.:
******Little did I know I would face the biggest scare of my life while scheduling myself for a Supra Pubic Catheter/TURP surgery at St. David's Hospital in Austin, Tx. Registered in and ready to go. The surgery part went pretty well. I awoke and stayed the overnight as planned. I was getting set to go Saturday morning and was given my normal medication. The only problem was my nurse gave me a large amount of narcotic Percocet. I'm already on Codeine 2 tablets, and a 72 hour 100 MCG/HR Fentanyl pain patch. Adding a large dosage of Percocet was the 3rd narcotic. Results...I was unresponsive for the next 6 days. The only thing I remember on surgery day is being in my room after the surgery, and my wife was spending the night and pulling out the overnight bed.
Like I mentioned above the next day came and they were actually almost ready to start the discharge paper work when I was given all my regular medication via G-Tube, and MORE Percocet. Of course I became non-responsive and sent to ICU. The next thing that happened was the Emergency Response Team was sent to my room as there was no response from me, and nearly flat-lining. For the next 6 days I was monitored in the ICU, and folks thought I was waking up as I moved around a little but I didn't awake. Eventually they sent me for a CT of my head and abdomen. My wife only managed to get me to open my eyes once in a while. My wife took a week vacation to stay with me as she was very scared that I wasn't going to survive. Apparently, I gave the ICU nurse problems when I thought I saw my kids running around in the room. (Hallucinations from being severely overdosed) I guess I was like a happy drunk to the poor ICU nurse. All they kept telling my wife is, "It's going to be a couple days due to the situation." eventually a Doctor told her that the nurse overdosed me.
All in all this was a very tough week on me, and especially scaring my family that I might not make it out of this. I was supposed to have surgery and stay 1 night. Instead I had surgery, got overdosed on percocet, and spent 11 nights at St. David's hospital. (And that's mostly because I was begging so much for them to send me home, and not bother with therapy at Parkview Manor. My wife told me she called her dad when the Rapid Response Team kicked her out of the room I was in. She told her dad, "I think we lost David". All I know is I escaped death and wanted to be home with my family. Thinking back to the situation at St David's I can't remember anything but telling the same lady if I could go home. She said not until your kidneys return to a normal working function. Having so many surgeries in the last 4 years, and problems on the last 3 surgeries I have decided to talk Doctors into keeping me awake on surgeries going forward. (Most of my surgery problems were related to me waking up before surgery completed.) This hospital was supposed to quality checks by another associate before administering narcotic pain medication. That wasn't done or I would not have been severely overdosed. That overdosed caused my kidneys to totally shut down function. Sad but true this hospital has a EXCELLENT reputation. I am alive and I'm not bothering taking the time to fight them like I totally could have. I was alive after 11 days so that was the reward and hopefully a HUGE lesson for that nurse. Next surgery is MIC Peg, but I'm holding off as long as possible.
UPDATE: JUNE 2015*********
******After racing 5 hospitalizations in the first 4 months of the year I seem to be settling in safely. Each hospitalizations was 2 weeks long. 2014 saw a total of 10 hospitalizations with this horrible disease we call Multiple System Atrophy (MSA). Sometimes we really know our body than the doctors. I had to relay so very overlooked information which probably resulted in 4-5 hospitalizations in the last year. Supra pubic catheters just have to be changed more often with our disease. If your hospitalized with urinary tract infections and have a indwelling catheter please assure the hospital changes out when you arrive and leave. I was receiving IV's for 2 weeks with same supra pubic catheters in place. My UTI infections were so bad they were slowing down my kidneys putting me in a coma state. I had to stay in the hospital no less than 2 weeks at a time because my kidneys were so out of range.
Multiple System Atrophy is really a day by day disease. Sometimes morning to evening can be a horrifying change in some patients. Recently I have been having difficulty sleeping at night. Can't get comfortable for nothing. Those that have coat hanger pain can certainly understand. And if you have a feeding machine the only way to sleep sometimes is flat on your back. I took a lot to get used to doing that.
******HOSPITALIZATION HISTORY ASSOCIATED WITH MULTIPLE SYSTEM ATROPHY DISEASE AND RELATED SURGERY:
1965-2006- 1 HOSPITALIZATION FOR BIRTH
2007- 3 HOSPITALIZATIONS (SYMPTOMS)
2008- 5 HOSPITALIZATIONS (DIAGNOSIS)
2009- 7 HOSPITALIZATIONS (1 RE-HAB)
2010- 6 HOSPITALIZATIONS (1 RE-HAB)
2011- 6 HOSPITALIZATIONS (1 RE-HAB)
2012- 6 HOSPITALIZATIONS (2 RE-HAB)
2013- 7 HOSPITALIZATIONS (2 RE-HAB)
2014- 10 HOSPITALIZATIONS (1 RE-HAB)
2015- 5 HOSPITALIZATIONS AS OF JUNE 18TH
MY MOM: JUDY DENNIS 1937-1994
Trying to understand Multiple System Atrophy
There is no evidence that MSA is an hereditary condition. Yet many specialist in neurology have only recently begun to understand MSA. We pretty much can say that we understand some early symptoms of MSA help us differentiate it between PD (Parkinson's disease). Many people with MSA may have had a diagnosis of Parkinson's disease (PD) initially. Dr. Sawyer a 40 year Neurologist Specialist out of Victoria,Tx said my disease was Parkinson's Disease. (He also said he was not 100% sure.) That made us go to more doctors for a more positive diagnosis. Positive is exactly what didn't happen. Dr. Jankovic knew immediately what my diagnosis was but still ordered 3 hours of testing which included a PET Scan. MSA and PD cause stiffness and slowness in the early stages. I can say from many sources that dizziness, swallowing difficulty, and urinary difficulties are usually unusual in early Parkinson's disease. The presence of inclusion bodies and loss of certain nerve cells help make MSA a distinct disorder from Parkinson's disease. So let's see what we can learn together about MSA.
Probably the turn key start for my doctors in obtaining a diagnosis was my constant complaints of dizziness. The tilt-table eventually proved all along to my doctors that indeed the dizziness is due to blood pressure falling when standing up or changing position. This drop in blood pressure is called postural hypotension. I mentioned in another forum a few things that help relieve this symptom. These included increasing salt and fluid to help your blood flow. I take florinef as medication to help relieve this symptom. Some folks perform calf exercises, or simply put avoid sudden changes in position.
Many of us don't gain much success from Parkinson's disease medication. (Yet it still can help reduce some symptoms like stiffness.) I know my neurologist had me on sinemet, and than off sinemet because he could tell the difference between the disease and side effects of the sinemet. Quickly he made an analysis that the results from sinemet wasn't helping me much at all, which today the updated criteria of MSA relays on such information as a probable diagnosis. We did learn that adding 4.5g / daily of mirapex with the sinemet helped with some of the stiffness and tremors I was having. (Tremors didn't go away, but did slow down somewhat.) So again my neurologist threw in the fact that every MSA patient is different with responses to regiment of medications given. So now you probably understand where I get the title of this forum. Were all trying to learn and understand Multiple System Atrophy (MSA).
Keep in mind as you read this that the information learned about MSA really takes time to filter down. Many of our specialist are learning about MSA with us. I am so surprised still today on how many Dr's know nothing about our MSA neurological disease. If I didn't run into a 39 year Mayo Clinic specialist who was present for nearly 4 hours of my somotosensory / PET scan testing, I might still be struggling today with no diagnosis or direction to look into. So we have to constantly be telling folks, "MSA is like Parkinson's disease but I have extra additional symptoms like blood pressure problems." (Remember that line because you will have to use it at some point.) Folks seem to understand Parkinson disease much better. I guess names like Ronald Reagan and Michael J. Fox help with the recognition.
Now, back with our topic here. Sometimes another problem MSA patients might experience is sleep apnea. This is sometimes associated with snoring, or simply put feeling tired during the day. (Usually associated with low oxygen levels.) But on a serious note sleep apnea is stopped breathing at night when we sleep. Sleep studies may be done to see if any of these symptoms are affecting you. It might be necessary for you to have some breathing assistance at night with a piece of equipment called CPAP (Continuous Positive Airway Pressure). Other breathing problems in MSA are deep sighs, and noisy breathing. I'm here to tell you get yourself tested if you experience these related symptoms.
Yet another problem that may occur at night is having to go to the toilet at night. People with MSA simply produce less urine during the day and more at night. For some of us we may consider a commode or urinal at our bedside. For us patients with orthostatic hypotension or postural hypotension we are usually prone to falls. Some MSA patients may not be able to empty their bladder completely. In this type of situation often self catheterizing may be needed to make us more comfortable. The flip of the coin of this sometimes uncomfortable topic MSA patients experience is constipation. So important to drink our fluids and add fiber to our diets. Even then often we need medications or supplements to help us maintain regular bowel habits.
I want to finish this forum with leaving you this comment my diagnosing neurologist specialist left me. The target for your health care should be the maintenance of you quality of life through close contact with your GP. Treatment of MSA involves a combination of medicine, specialized equipment, and the use of therapists to manage individual symptoms. I can at least understand that it takes a team of specialist to get us through. (GP, Internal Medicine, Urologists, Nephrologist, Neurologist Specialist, Home Health RN, Physical Therapist, Speech Therapist, Occupational Therapist, Psychotherapy, etc, etc..) And realize the reality of this neurological condition often is our specialist learning along with us.
TREATMENT / RECORDS / ADVICE:
I think that most of us are aware that some of us take some of the same medications. Yet, some of us take totally different medications. Now, what does this mean? My neurologist specialist will tell me that each patient is different. Since currently there is no cure we haven't found that winning medicine regiment. Each of our neurologist are trying to find that winning cocktail mix of medicine that works the best for our well-being. My neurologist used Michael J. Fox who has Parkinson's as an example. (He takes sinemet every 10-15 mins.)
MSA is associated with deterioration and shrinkage of portions of the brain. (Mostly cerebellum, basil ganglia, and brain stem). There is no known cure for our disease. So how do we treat it? So far we only know treatment involves a combination of medicine, specialized equipment, and the use of therapists to manage individual symptoms. Your treatment will usually be managed by a neurologist or physician who specializes in movement disorders. The complex nature of MSA means that the best treatment is gained from a multidisciplinary team approach. A multidisciplinary team is a group of health and social care professionals. Lets all hope for a cure soon.
In the mean time my family and myself try to keep the best records together we can. If you don't have everything together in a binder try to do so. You are entitled to your records from medical doctors and providers. (I even have ER records.) I'm convinced that I was approved for Social Security in 4 weeks because of a binder of all my medical visits was kept showing detailed criteria of the details, proof, and prognosis information. Keep your records together as it is so handy when you need it for obtaining any kind of help and well-being we can get.
Take advantage of some of the free websites that can create medical cards for your wallets, purses, pockets, etc. I know some of us don't get out and around much, but it's nice to have a little extra communication on us. In the event we need it we can take it out and let others be aware immediately of what meds were on, and the fact that we sometimes struggle to communicate, etc. We are all in this together, and together we will make a difference.
Adjusting to a MSA diet
Most of us with (OH) Orthostatic Hypotension, or those of us with low normal blood pressure cannot tolerate low salt diets. I have read a couple of sources that say we need between 2000 and 3000 milligrams of sodium to maintain our health. (And I find this very true.) While our Doctors are experimenting with that well-being regiment of pills to give us I figured I would do my part and look into the diet part. I hope some of you may find this information helpful, I know I do.
Our studies have found that table salt is an excellent source of sodium, as it has over 2000 (mg) of sodium per teaspoon. Salt tablets are also a good way of obtaining adequate amounts of salt without changing up that taste of your foods. Who would have thought that I'm here this morning writing to you folks about adding salt to your diet. But keeping me in an upright position requires me to have a more salty diet. So here are some ideas about food and the amounts of sodium I have read and seen from a couple of articles. (examples are showing mg/sodium) Again seek advice with your Dr's and throw these ideas at them to assure your best individual results.
All Bran (1 cup)- 600
Wheaties (1 cup)- 400
Cheerios (1 cup)- 275
Parmesan cheese (2oz)- 800
Cottage cheese (1 cup)- 425
FRUITS AND VEGETABLES:
(1) Dill Pickle-1400
Tomato Juice (12oz)- 1200
(1) Sweet Pickle-540
Canned vegetables (1 cup)- 500
MEAT AND POULTRY:
Lasagna serving- 1000
Canned Soup (1 cup)- 875
(1) Hot Dog-520
(1) Slice Cheese Pizza-500
(1) Slice of lunch meat- 300
(3) Slices of Bacon-250
(25g) Pretzel Stix- 1300
Salted Nuts (1 cup)-800
******Remember to add 4-8 glasses of fluid a day to all diets. (Water, juices, sport drinks, etc.)
******Try eating smaller meals
Dizziness with a feeling of rotation. Now this is something I can talk about that relates to some of the earlier symptoms I had leading eventually to a Multiple System Atrophy with Orthostatic Hypotension diagnosis. Although dizziness may be considered an umbrella symptom of our disease, many of us have experienced it. In fact 1 in 3 of us are reporting it on our PLM site. (Patients Like Me) I realize every MSA patient is different. Straight forward examination and history usually differentiate.
My ENT doctor explained to me that sometimes as people get older the blood flow to the ears deteriorates and this is thought to underlie many non-specific cases of vertigo. Arthritis of the neck may press on the major arteries going to the brain and give rise to vertigo in certain positions of our neck. Many of us have blood pressure which falls when we stand up giving rise to feelings of light headedness and vertigo. (Many of us MSA patients I might add again.) Often people who feel depressed or who are anxious complain of dizziness. There is a feeling of the room spinning when the head is turned or perhaps on lying down or standing up. Often there is accompanying nausea and an inability to focus properly.
It is amazing how many tests were given to me before someone finally got smart and put me on a tilt-table to check for orthostatic hypotension. Lets see I clearly failed my (ENG) test indicating dizziness and balance problems. I took the (VEP) visual test 2 times and had results of "visual disturbances of double and blurred vision. But that tilt-table proved more than enough of my share of problems stemmed around blood pressure related problems. Later on the (PET) Positron Emission Tomography showed Dr's a very detailed solution for my total loss of hearing with atrophy (shrinkage) of my temporal lobes. At first my hearing loss lead my ENT (ear, nose, throat) doctor to believe I had Meniere disease which causes vertigo together with deafness and tinnitus. But clearly now we understand my dizziness/vertigo problems are mainly from falls in blood pressure mostly on standing. So I try to take pre-caution when standing up as much as possible.
Wanted to share this, and get it out to you folks to check out. Tilt-table testing by your Neurologist Specialist could be your ticket to start solving some of your dizziness/vertigo related problems.
SEE HOW YOU DO ON THIS ONE:
1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.
The lesson: The people who make a difference in your life are not the ones with
the most credentials, the most money, or the most awards. They are the ones
A little Humor!!!
Use it to communicate to health professionals
10 KILL ME NOW, I cannot bear to live one more nanosecond
9 I am here to keep me from killing myself with the pills I have at home, the pain is that bad
8 Please just let me lose consciousness
7 It hurts so much I can no longer think clearly, or act in a dignified manner
6 It is constant and nothing I have at hand gives me relief
5 It comes and goes and nothing I have at hand gives me relief
4 The pain does not go away and it is scaring me, I am afraid to sleep because I might not wake up
3 I could use something to make it more bearable, I am here because I do not know what this is
2 I could use something to make it more bearable, I am because I do know
1 It's bearable but enough to make me come to the hospital just in case
Coach said it was the best tackle he'd ever seen but I still have a lot to learn about tennis.
You call it day drinking.
I call it surviving.
How dare you see me exactly the way I am.
Hi, I'm Dave. It's been over a week since my last selfie.
Not sure whether to laugh or cry. Think I'll just have a panic attack.
When did being kind and reasonable stop being a thing?
If you like piña klonopin.
Kind words make all the difference.
You know how some people have restless leg syndrome when they sleep? After today's staff meeting, my co-workers told me I have that.
Once you finally prepare to pay the price.. it's usually free of charge.
Life's too short for trips to the fridge so grab two beers.
The next sentence in this update is hilarious...
(The first sentence in this update was horribly misinformed.)
Some of the most amazing things in life couldn't have been planned if you tried.
Hoarders is on. I wish one these TVs worked.
My Nascar hero...Mark Martin
Pictures of my Nascar Racing Hero!!! Don't let this 55 year old fool you!!! He still has it!!! He is the biggest inspiration in my life...period!!! And the daily workout regiment Mark does is just incredible!! Thanks for all you do Mark!!!
"It's not bragging if you can do it!!!"
What is "anxiety"? There is constant pre-occupation of a "what if" nature, with thoughts going round and round in circles, returning constantly to whatever has revoked the anxiety. Sound at all familiar? Myself, as a sufferer find sleep is disturbed, sometimes I become irritable and unable to concentrate on other activities. I have always been known as a true people person, but with MSA my family will tell you exactly when I'm out of my Cymbalta medication. (I use Cymbalta for nerve pain and depression/anxiety.) Perhaps one of the few drugs people around me notice that works. To me I have experienced 2 types of anxiety in the last 3 years or so.
(1) Mild anxiety: Even a few years leading up to my diagnosis I sometimes had to respond to support from others, being allowed to talk through the reasons for the anxiety and trying to think of positive ways to overcome the cause. At that time I had the everyday stresses of job, career, family, etc. Sometimes more described as an emotional liability roller coaster ride. I often found helpful strategies in taking regular exercise, scheduling activities to allow myself protected time when I could get things into perspective and turning to hobbies which are relaxing in themselves.
(2) More severe anxiety: Came around the time just before my onset of diagnosis of MSA. This lead to seeking treatment of 60Mg. of Cymbalta. I sure found it appropriate to have medication for anxiety since we felt it was beginning to dominate my life. I found myself that patient who wanted to isolate myself from family and friends. Simple tranquillizers are extremely helpful and have the advantage of being taken just when needed rather than as a regular course of treatment. Some of these medications however can become addictive. So Cymbalta was an option my neurologist jumped all over on. (Always seek your doctors advice when dealing with anxiety symptoms.)
So what exactly is anxiety? Most definitions describe anxiety as a psychological and physiological state which is characterized by cognitive, somatic, emotional, and behavioral components. In my terms of understanding I call anxiety an unpleasant feeling of fear and worry. From there I break down the fear and the worry. Usually, but now always, fear is related to specific behaviors of avoidance or escape, whereas anxiety is the result of threats that are taken to be uncontrollable or sometimes unavoidable.
So in easiest terms to understand anxiety is a normal reaction to stress. Best advice is always talking to your Dr's. Try not to let yourself suffer more than we already are with our current MSA diagnosis.
I'm here to tell you this is a symptom of Multiple System Atrophy for many of us. It's only natural that we would have this symptom. Keep in mind some of the following. To me the definition of depression is taking the edge off the enjoyment of life with feelings of sadness and an inability to enjoy things fully. We all have our own patterns which some of it we can control, and simply put some "we can't". Everyone is different in respect that some of us cry easily and find that our sleep is disturbed. Some of us get to sleep easily but to wake early in the morning and spend the rest of the time worrying. For some of us depression may be accompanied by feelings of worthlessness and, as it gets more severe, a constant preoccupation with dying, ill health and other morbid thoughts.
The reason I bring up this topic is some of us do experience these types of pains associated with Multiple System Atrophy according to my Neurologist. (It was the very first symptom I developed before my diagnosis months later). Pain in the leg resulting from pressure on a nerve. The sciatic nerve travels down the back of the leg and into the foot. At a number of points it is possible for structures to put pressure on the nerve, giving rise to the pain. Sometime slippage of one of the discs in-between our vertebrae can trigger off the problem as well. These are made up of a soft, jelly like core surrounded in a tough fibrous coating; either the whole disc can slip or, more commonly, part of the fibrous coating ruptures and allows some jelly-like material to ooze out and press on a nerve.
Now, this can happen following a minor movement or sometimes after a clear recognizable event that puts strain on the back. Usually there is acute pain in the lower back with radiation of the pain along the back of the leg, down to the calf or down to the foot. I explained this to another patient on this site, and he talked me into posting this topic. This pattern of radiation of pain helps decide which nerve is being irritated as does the pattern of muscle weakness or loss of there flexes at the knee or at the ankle. Very occasionally there is more severe nerve damage affecting the nerves that control the bladder or the bowel in which case will be unable to pass urine properly. (This was the first symptom I developed before my diagnosis.)
Anyway, we suffer enough with our disease, develop a good relationship with your GP, Neurologist, Urologist, etc. Let them know about these types of pains immediately as some symptoms mentioned are truly an emergency. God Bless Everyone!!!
Urinary incontinence 55%
Postural faintness 51%
Recurrent syncope 18%
Fecal incontinence 22%
Best L-Dopa response
Last L-Dopa response
Gait ataxia 49%
Limb ataxia 47%
Intention Tremor 24%
(PAF) Pure Autonomic Failure
Interesting that many MSA patients may first start with symptoms that suggest PAF. PAF is a degenerative disorder of the autonomic nervous system presenting in middle to late life, affecting men more often than women. The initial feature in men is impotence, but the symptom that usually brings patients to the physician is orthostatic hypotension.
As we already know orthostatic hypotension is best described as unsteadiness, dizziness, or faintness upon standing. Usually worse in the morning, after meals or exercise, or in hot weather. As I read up on PAF we can learn that patients tolerate high altitude very poorly, perhaps because some patients hyperventilate in this situation. Vanderbilt website states that it is noteworthy that patients with PAF do not usually have fevers as high as healthy subjects; nevertheless, any fever will significantly lower their blood pressure and consequently decrease their functional capacity. A sudden decline in functional mobility in a patient with PAF is suggestive of an inter-current infection, usually of the urinary tract.
Vanderbilt website explains on that autonomic failure should be distinguished from two other disorders classified as primary autonomic failure: (1) Multiple System Atrophy (MSA) and (2) Idiopathic Parkinson Disease (PD). PAF is less progressive and generally induces less disabling symptoms than do these other syndromes. As I read on it also explains that there should be no indication from the history or physical examination of cerebellar, striatal, pyramidal and extra pyramidal dysfunctions we have with our MSA.
The outlook of PAF have generally good outlook compared to our MSA. Many live for 20 years or more after the onset of their disease. Treatments are similar to orthostatic hypotension with drinking plentiful amounts of water sometimes the biggest help. (great example is 16 ounces of water can raise blood pressure as much as 40 mm Hg, with peak at 30 mins. after ingestion.) Leg-crossing, compression stockings mentioned as well.
*God's Accuracy*God's accuracy may be observed in the hatching of eggs. For example:
-the eggs of the potato bug hatch in 7 days;
-those of the canary in 14 days;
-those of the barnyard hen in 21 days;
-The eggs of ducks and geese hatch in 28 days;
-those of the mallard in 35 days;
-The eggs of the parrot and the ostrich hatch in 42 days.
(Notice, they are all divisible by seven, the number of days in a week!)
The lives of each of you may be ordered by the Lord in a beautiful way for His glory, if you will only entrust Him with your life. If you try to regulate your own life, it will only be a mess and a failure. Only the One Who made the brain and the heart can successfully guide them to a profitable end.
God's wisdom is seen in the making of an elephant.. The four legs of this great beast all bend forward in the same direction. No other quadruped is so made. God planned that this animal would have a huge body, too large to live on two legs. For this reason He gave it four fulcrums so that it can rise from the ground easily.
The horse rises from the ground on its two front legs first. A cow rises from the ground with its two hind legs first. How wise the Lord is in all His works of creation!
God's wisdom is revealed in His arrangement of sections and segments, as well as in the number of grains.
-Each watermelon has an even number of strips on the rind.
-Each orange has an even number of segments.
-Each ear of corn has an even number of rows.
-Each stalk of wheat has an even number of grains.
-Every bunch of bananas has on its lowest row an even number of bananas, and each row decreases by one, so that one row has an even number and the next row an odd number.
-The waves of the sea roll in on shore twenty-six to the minute in all kinds of weather.
All grains are found in even numbers on the stalks, and the Lord specified thirty fold, sixty fold, and a hundredfold - all even numbers.
God has caused the flowers to blossom at certain specified times during the day, so that Linnaeus, the great botanist, once said that if he had a conservatory containing the right kind of soil, moisture and temperature, he could tell the time of day or night by the flowers that were open and those that were closed!
Thus the Lord in His wonderful grace can arrange the life that is entrusted to His care in such a way that it will carry out His purposes and plans, and will be fragrant with His presence.
Only the God-planned safe life is successful. Only the life given over to the care of the Lord is fulfilled.
ADDITIONAL MULTIPLE SYSTEM ATROPHY INFORMATION:
Multiple system atrophy is a progressive, fatal disorder that makes muscles stiff (rigid) and causes problems with movement, loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). The parts of the brain that control movements and many internal body processes degenerate. Some symptoms resemble those of Parkinson's disease, but internal body processes also malfunction. Doctors base the diagnosis on symptoms. Simple measures and drugs can help lessen symptoms, but the disorder is progressive and ultimately fatal.
Multiple system atrophy usually begins when people are in their 50s. It affects about twice as many men as women. It results from degeneration of several parts of the brain and spinal cord: The basal ganglia (collections of nerve cells at the base of the cerebrum, deep within the brain), which help control voluntary muscle movements by balancing the actions of muscle groups that move the same muscles in opposite ways (for example, a group that bends an arm and a group that straightens the arm) The cerebellum, which coordinates voluntary movements (particularly complex movements done simultaneously) and helps maintain balance Areas that control the autonomic nervous system, which regulates involuntary body processes, such as how blood pressure changes in response to changes in posture (see Low Blood Pressure: Orthostatic Hypotension.) Nerve cells that stimulate muscle action (motor neurons) in the cerebellum, basal ganglia, and spinal cord
The cause of the degeneration is unknown:
Multiple system atrophy includes three disorders previously thought to be separate disorders: Olivopontocerebellar atrophy, which is characterized by symptoms similar to those of Parkinson's disease (called parkinsonism) and difficulty maintaining balance Striatonigral degeneration, which is very similar to Parkinson's disease except that levodopa Some Troften does not relieve symptoms Shy-Drager syndrome, which is characterized by parkinsonism and problems with urination, blood pressure control, and some other internal body processes
Multiple system atrophy is a progressive disorder. Early symptoms vary, depending on which part and how much of the brain is affected first. The disorder causes three groups of symptoms.
Parkinsonism—symptoms that resemble those of Parkinson's disease—may occur early. These symptoms result from degeneration in the basal ganglia. Muscles are stiff (rigid), and movements become slow, shaky, and difficult to initiate. When walking, people may shuffle and not swing their arms. People feel unsteady and off balance, making them more likely to fall. Posture may be stooped. Limbs may tremble jerkily, usually when they are held in one position. But people with multiple system atrophy are less likely to have tremors during rest than people with Parkinson's disease. Articulating words is difficult, and the voice may become high-pitched and quaver.
Loss of coordination may also occur early. It results from degeneration in the cerebellum. People may be unable to control movements of their arms and legs. Consequently, they have difficulty walking and take wide, irregular steps. When reaching for an item, they may reach beyond it. When sitting, they may feel unstable. People may have difficulty focusing their eyes on and following objects. Tasks that require rapidly alternating movements, such as turning a door knob or screwing in a light bulb, also become difficult.
Malfunction of internal body processes, controlled by the autonomic nervous system, may also occur early. Blood pressure may decrease dramatically when a person stands up, causing dizziness, light-headedness, or fainting—a condition called orthostatic hypotension. Blood pressure may increase when a person lies down. People may need to urinate urgently or frequently or may pass urine involuntarily (urinary incontinence). They may have difficulty emptying the bladder (urinary retention). Constipation is common. Vision becomes poor. Men may have difficulty initiating and maintaining an erection (erectile dysfunction).
Other symptoms of autonomic malfunction may occur early or late. Less sweat, tears, and saliva are produced. As a result, people may become intolerant of heat and have dry eyes and mouth. People may have difficulty swallowing and breathing. Breathing may be noisy and high-pitched. During sleep, breathing may stop repeatedly or become inadequate (sleep apnea). People may lose control of bowel movements (fecal incontinence).
Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death 9 to 10 years after symptoms begin.
The diagnosis is based on symptoms. However, symptoms may resemble those of other disorders, making the disorder difficult to diagnose.
The only sure way to diagnose multiple system atrophy is to examine brain tissue after death. Nonetheless, some tests help with the diagnosis. For example, if levodopa relieves parkinsonism, the cause is probably Parkinson's disease. Levodopa has little or no lasting effect on similar symptoms due to multiple system atrophy. Magnetic resonance imaging (MRI) of the brain may help rule out other neurologic disorders. Tests to evaluate the autonomic nervous system may be done. For example, blood pressure may be measured while the person is sitting and after the person stands to check for orthostatic hypotension. The presence of orthostatic hypotension supports the diagnosis of multiple system atrophy.
No treatment can cure multiple system atrophy. However, a combination of simple measures and drugs may help relieve symptoms. Parkinsonism: Continuing to do as many daily activities as possible helps maintain muscle strength and flexibility. Stretching and exercising regularly may also help. Drugs used to treat Parkinson's disease, such as levodopa plus carbidopa or pergolide, taken by mouth, may be tried, but these drugs usually have little effect or are effective for only a few years. Orthostatic hypotension: Measures are taken to stabilize the sudden changes in blood pressure. Consuming more salt and water may increase the volume of blood and thus help increase blood pressure. Standing up slowly may help prevent blood pressure from decreasing too much when a person stands, as may wearing an abdominal binder or compression stockings. These garments help maintain blood pressure by promoting blood flow from the legs to the heart and thus prevent too much blood from staying (pooling) in the legs. Raising the head of the bed by about 4 inches (10 centimeters) can help prevent blood pressure from increasing too much when the person lies down. If blood pressure does increase, an antihypertensive drug, may be taken at night. Fludrocortisone may be taken by mouth. It helps the body retain salt and water and thus may increase blood pressure as needed when a person stands. Other drugs, such as midodrineor pyridostigmine, taken by mouth, may also help. Decreased production of body fluids: If sweating is reduced or absent, people should avoid warm environments to avoid overheating the body. Good dental care and regular check-ups are essential for people with dry mouth. Artificial tears (eye drops containing substances that resemble real tears) applied every few hours may relieve dry eyes. Urinary retention: If needed, people can learn to insert a catheter into the bladder themselves. They insert it several times a day. It is inserted through the urethra, allowing urine in the bladder to drain out. People remove the catheter after the bladder is empty. This measure helps prevent the bladder from stretching and urinary tract infections from developing. Washing the hands, cleansing the area around the urethra, and using a sterile or clean catheter also help prevent infections. Inserting a catheter becomes more difficult as coordination deteriorates. Doctors may prescribe bethanechol, which increases the tone of bladder muscles and sometimes makes emptying the bladder easier. Urinary incontinence: Oxybutynin, taken by mouth, may be used to relax the muscles of an overactive bladder. If incontinence persists, using a catheter inserted into the bladder may help. Some people learn to insert it themselves. Constipation: A high-fiber diet and stool softeners are recommended. If constipation persists, enemas may be necessary. Erectile dysfunction: Usually, treatment consists of drugs such as sildenafil, tadalafil, or vardenafil, taken by mouth.
As the disorder progresses, people may need a breathing tube, a feeding tube (usually surgically inserted), or both. Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activites, and speaking become difficult. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services.
SLEEP DISORDERS AND MULTIPLE SYSTEM ATROPHY DISEASE:
Sleep disorders are so common in multiple system atrophy that they should be considered an integral part of the disease. Sleep fragmentation occurs in more than half of the patients, with sleep onset and sleep maintenance insomnia. Periodic leg movements (RLS)of sleep are also common, although they are generally asymptomatic. REM sleep behavior disorder, a parasomnia in which the patient presents vigorous movements associated with intense dreaming during REM sleep, is detected polysomnographically in almost all the patients with variable severity. Nocturnal stridor is produced by obstruction on the glottis level. The cause of stridor is unknown but two alternative explanations have been proposed: paralysis of the muscles opening the vocal chords and excessive contraction of the muscles that close them. A combination of both, however, is the most likely explanation. Nocturnal stridor is associated with decreased survival and its treatment is based on continuous positive air pressure (CPAP) when it occurs only during sleep or tracheostomy when it worsens and becomes also diurnal. Recently I have learned that a very large percentage of (PAF) Pure Autonomic Failure patients do not suffer from REM sleep behavior as compared to (MSA) patients. So if diagnosed with REM sleep behavior chances are higher that Multiple System Atrophy is a more true your diagnosis.
Well on September 10th, 2012 I finally had a scheduled sleep study performed with the polysomnograph hooked up to me. For some reason I was very concerned on explaining to the lady who set up the test that my medicare covers more if they hook the mask up for the last 4 hours or so. She explained that the CPAP machine only gets hooked up if you indeed have sleep apnea, and if anything important gets noticed and recorded she might hook up the machine for the final 2 hours or so. Well, if my luck would have it only 3 hours into my study the CPAP machine was put on me and turned on. After approximately 2 hours REM was detected along with Restless Legs Syndrome Disorder. Obstructive type of snoring has been no secret.....I knew I snored. So within 3 hours a problem sleep related breathing (snoring), Parasomnia REM, and a sleep related movement disorder was recorded.
Now to understand what each means. We already explained above a little about REM (Rapid Eye Movement). Rapid eye movement sleep, or REM sleep is one of the five stages of sleep that most people experience nightly. It is characterized by quick, random movements of the eyes and paralysis of the muscles. The amount of time spent in REM sleep varies significantly with age; it normally makes up around 20-25% of an adult humans total time spent asleep (on average about 90-120 minutes). People usually experience REM sleep 4 or 5 times a night (it comes in cycles), the first cycle - which occurs at the beginning of one's sleep - only lasts for a short time, with each following cycle being a little longer.
It is common for some people to experience light sleep, or even to wake up after a cycle. The amount of time one spends in REM sleep has a lot to do with certain psychological factors - people with depression tend to be in the state for a shorter duration than those without it. While in REM sleep, most of the muscles become paralyzed and the activity of the brain's neurons becomes quite intense, similar to the activity during wakefulness. This is why REM sleep is sometimes known as paradoxical sleep. It's during this stage of sleep that most people are able to have especially vivid dreams. Some people don't experience the paralysis, their muscles continue to move, even while they are in REM sleep. They may act out their dreams in violent or dramatic ways, this is a condition called REM behavior disorder (RBD).
Restless Legs Syndrome Disorder (RLS) was noted as another diagnosis on September 10th, 2012 sleep study. RLS is a rare very strange disorder. Most all my symptoms occur in the later part of the day or evening before going to sleep. In my case while I'm sitting or lying down I feel like getting up and moving around. When I walk around the unpleasant feeling of restless legs syndrome temporarily goes away. Restless legs syndrome can disrupt sleep — leading to daytime drowsiness. What I feel with my RLS is very unpleasant sensations in my right leg and foot. Often my foot shakes and is very disturbing too my wife Valerie as well. It does occur in my left leg from time to time. However, very dominent in my right foot. I can describe the sensations as crawling throbbing that is very painful at times. Affected people usually don't describe the condition as a muscle cramp or numbness. They do, however, consistently describe the desire to move or handle their legs. It's common for symptoms to fluctuate in severity, and occasionally symptoms disappear for periods of time.
Common characteristics of RLS signs and symptoms include:
Onset during inactivity.
The sensation typically begins after you've been lying down or sitting for an extended period of time.
Relief by movement.
The sensation of RLS lessens if you get up and move.
People combat the sensation of restless legs in a number of ways — by stretching, jiggling their legs, pacing the floor, exercising or walking.
This compelling desire to move is what gives restless legs syndrome its name.
Worsening of symptoms in the evening.
Symptoms typically are less bothersome during the day and are felt primarily at night.
Nighttime leg twitching.
MY WIFE, MY CAREGIVER, MY BEST FRIEND:
PHYSICAL THERAPY FOR MSA:
The symptoms of Multiple System Atrophy disease may cause you to move slowly everyday. You may also feel pain, tightness, and weakness, especially in your muscles. The use of physical therapy may help with these symptoms. This is what sent me out locally to hook up with a physical therapist to help along my path with physical exercise. There are so many different exercises that can actually be performed without even getting out of bed. And for more fun many folks have enjoyed WII system type workouts. Whatever it takes to help us move!!!
Usually you may need to get a doctor's order to be seen in physical therapy. If you feel you can benefit from physical therapy, do not hesitate to ask your doctor for a referral. Medicare covers the first 15 visits so my advice to medicare patients is to spread out your visits to obtain the very best exercise regiment. There are a few great services such as physical therapy out there that can help us along.
As I'm sure you already know physical therapy cannot cure MSA, because at this time, neurological damage cannot be reversed. However, therapy can enable you to compensate for the changes brought about by the disease. A physical therapist can teach you exercises to strengthen and loosen muscles. (In my case mostly loosen muscle stiffness.) Many of these exercises can be performed at home. The goal of physical therapy is to improve our independence and quality of life by improving movement and function and relieving pain.
Here's what physical therapy can help with:
* Balance problems.
* Lack of coordination.
* Walking gait.
***A (PT) physical therapist can make recommendations for physical therapy at home, at an outpatient facility, or at a nursing facility. (Rehabilitation facilities as well.) In many cases the use of exercise is our best form of treatment for our disease.
FOCUS ON MSA:
It is widely believed that MSA disorder is very difficult to diagnose in patients, mainly because one set of symptoms may surface before the other is figured out. Neurologist may perform various tests and check the patients medical history to determine whether a diagnosis of MSA is appropriate. (In my case nearly 4 hours of somotosensory testing.) Some of the tests administered to me over the months to obtain a diagnosis included CT, MRI, PET, and tilt-table testing. (Keep in mind many of these produce images used to rule out other diseases more than finding MSA.) Tilt-table testing for orthostatic hypotension is usually very beneficial for spotting a very leading symptom of our disease. But the best practice for a diagnosis is obtained by those who listen and recognize our symptoms.
Now, considering that there is no cure for multiple system atrophy at this time the disorder can be devastating for both the patient and his or her loved ones. Both men and women are believed to be more or less equally susceptible to developing the condition. While most cases involve men and women in their 50's, younger individuals have also been diagnosed with MSA. (We have several patients here on PLM that are less than 50 years old.) The disorder is characterized as neurodegenerative, and individuals may have a life expectancy of up to 10 years following diagnosis. (Remission from the disorder is believed to be nonexistent.)
In less severe cases involving cognitive decline, men and women of all ages have been known to seek out different options, such as prescription drugs and supplements to boost memory, focus and alertness. While medications may be appropriate on a case by case basis, as determined by our doctors, in other cases a natural supplement may improve cognitive performance. These usually help boost our neurotransmitter activity in the brain.
I love baseball so let me use a baseball MSA recap:
POSITIVES 000 001 000 1
NEGATIVES 110 100 11- 5
RECAP OF GAME:
There are drugs that may reduce symptoms in some individuals.
According to many reports the disorder may be difficult to diagnose.
Symptoms may include slower movement and heart rate problems.
Reports indicate there is no cure for this disorder at the time of this ballgame.
Prescription drugs may cause undesirable side effects and reactions.
Men and Women may be at equal risk of developing the condition.
Point is it is very hard to prepare for a degenerative disorder such as MSA, and since there is no cure as of yet, it is considered one of the more devastating health conditions on record. There are many different forms of cognitive decline, including MSA, that are addressed through a combination of prescription drugs, clinical treatments and even natural supplements. Don't give up the focus on whatever help you can latch onto. Your not alone in this battle!!
DEMENTIA AND MSA:
Many times I don't know what day of the week it is, or what day of the month, or even what year it is. I'm always thinking its still 2008. Sometimes I still write down 2007 when I sign papers for my 6 year old to take back to school. And bless his 6 year old heart when he corrects me for putting down 2007. And thank goodness I look out the window once in a while to know its garbage day. Others around me don't understand why, and of course on comes my depression from seeing everyone's frustration. I just hate being a burden on everyone and usually favor the quiet side and isolation as the end result of the dementia.
I can honestly say I have enough signs of dementia to say it is a symptom of illness. It may not be directly linked with MSA, but most likely linked to the atrophy of my temporal lobes all my PET scans nicely showed. My neurologist specialist explains that with aging come cognitive decline, thus making dementia not a direct symptom of MSA, but part of aging. So what my doctor is saying is that dementia remains a nonsupporting feature of MSA with newest criteria updates. So my question is how many of us before retirement age and younger experience some forms of dementia?
My short term memory is getting worse everyday. I often get turned around when out of my surroundings also. And unfortunately a great deal of long term events in my lifetime are also forgotten. Recently, I went to my sons baseball game in a town 8 miles down the road that we actually lived in a few years ago. As we got there I took my time getting to my seat, sat down and made an announcement, "wow I've never been here before." Everyone in my family was so fast to point out that this particular field I used to take the boys to often to hit "pop-ups" say 5-6 times a year. Oops!!! Yesterday I walked out of the house and walked up the street to the general store. I walked around inside and then all the sudden I'm wondering where I'm at, and why I'm even in the store with no money to buy anything in the first place. Luckily I could see the house down the street to walk home.
When I finally do think about what I'm doing it really scares me especially since I'm only 47 years old. Except for the treatable types of dementia, there is no cure to this illness. (Just my luck it seems.) Dementia is a frightening illness for many of us. We all want our brain function to remain intact and our memories to remain unharmed. For those experiencing dementia symptoms, it is a frustrating experience. My neurologist specialist just put me on aricept so I hope that will help me out some. This particular medication is very good for beginning stages everyone tells me. I just hope my neurologist grades my mini-mental exam using a curve on my next visit. (Not to mention the fun abbreviated mental test.) At least warn me when he shows me something that 20 questions from now its going to be on the test. LOL
The more I write on my dementia the more I want to throw in cognitive issues as well. Cognitive disabilities come in many forms. Many involve difficulties or deficits involving problem-solving, attention, memory, comprehension, reading, and verbal comprehension. So there are many cognitive type disabilities like Autism, Dementia, Parkinson's disease, Down syndrome, etc. The one thing I do know is the greater the severity of the cognitive disability the person experiences, the more difficult it is for the individual to comprehend.
IF YOU HAVE FACEBOOK: GO AND ADD ME--DAVE DENNIS GET READY TO LAUGH!!!!
Ann and Dennis, Minneapolis, MN:
Ann Gerard, Retired College Professor, Westminster, MA http://www.google.com/profiles/jahoward32
Arthur Wall, Orland Park, IL : http://aepwall.blogspot.com/
Dan Brooks: http://www.wewillgoon.blogspot.com/
Dave Dennis: Cure Multiple System Atrophy Disease by: http://david1000.weebly.com/
Debra Jones-Price: http://christiansdontbite.blogspot.com/
Dennis and Lori Jakeway: http://msa.dennisjakeway.com/ http://www.lifewithmsa.com/
Frank Cervone: http://www.hollywoodrepublican.net/2011/05/rushing-msa/
Gumbypoole aka Scott Poole, Winston-Salem, N.C. Living with a SNOW(WO)MAN:http://www.livingwithasnowman.blogspot.com/Jessica “Sami” Pennington:http://samibebe.livejournal.com/
Mary Mershanti, Tampa, Florida: Living while dying: http://mershanti.blogspot.com/
Mary Satterwith, Florida: http://marysatterwhite.blog.com/
Steve & Fran: Multiple System Atrophy: I Have This Disease - It Doesn't Have Me:http://msajourney.blogspot.com/
Timothy P. Foley: http://msainfo.tripod.com/
Movement Disorder Virtual University / WeMove: http://www.mdvu.org/library/disease/msa/
Patricia Luper Story