Re: Information Exchange for Parkinson's Plus Disorders

[Guest guest]

Hi Connie,

Did your mother have MSA or PSP or do you know for sure? There was no autopsy

done on my mother-in-law, her official diagnosis through clinical observations

was Olivopontocerebellar atrophy (OPCA), apparently non-hereditary as far as

we know right now. Time will tell on that score as she has 3 siblings and 6

children. There are also many different hereditary forms of OPCA.

Non-hereditary or sporadic OPCA is considered one of the three forms of

Multiple System Atrophy along with Shy-Drager Syndrome and Striatonigral

Degeneration. The term Multiple System Atrophy is relatively new and not all

doctors may use this terminology when diagnosing. Many also don't realize

that the 3 disorders are now considered one disease based on pathological

evidence found in autopsies. The same irregularity in brain cells is seen in

all three disorders and is known as Glial Cytoplasmic Inclusions (GCIs) and

appear to involved in the cause of brain cell death in MSA patients.

Researchers now believe that the protein alpha-synuclein is somehow involved

in the formation of these GCIs. They theorize something similar is happening

with the protein called tau in Progressive Supranuclear Palsy and Corticobasal

Degeneration

With MSA the main symptoms may include:

1. Balance problems - if this is the main symptom OPCA is often given as a

diagnosis, also called MSA-C (cerebellar)

2. Orthostatic hypotension (low blood pressure when standing), bladder and

bowel incontinence, impotence in men - if these are the main symptoms,

Shy-Drager Syndrome is often given as a diagnosis, also called MSA-A

(autonomic)

3. Movement problems like slowness (bradykinesia), tremor or rigidity - if

these are the main symptoms, Striatonigral Degeneration is often given as a

diagnosis, also called MSA-P (parkinsonism).

Sleep disorders also are very common and include Sleep Apnea - loud snoring

and cessation of breathing during sleep for more than 10 seconds at a time and

REM Behavioural Disorder - thrashing and acting out of dreams. Thinking back

many caregivers say they noticed this acting out of dreams years prior to

diagnosis.

One of the things that frustrates many MSA patients and caregivers is that,

except for studies on new blood pressure medications, there are very few drug

studies that include MSA patients. Given that these two proteins, tau and

alpha-synuclein, seem to be involved in virtually all of the neurodegenerative

diseases including Alzheimer's and Parkinson's I'm hoping researchers will

include Parkinson's Plus patients more often in their studies. If anyone

hears of a new drug study please pass it along. I'm looking forward to more

information exchange among our groups.

Best regards,

Pam

connie newman wrote:

> Hi e,

>

> Welcome to the group.

>

> To everyone else, I have asked e to join our

> group and I suggest that each of you might want to

> join the CBGD and MSA group. There are several of us

> who have joined all the groups in hopes that we might

> find common ground that might help in further

> research.

>

> Remember, until an autopsy you will never know for

> sure that you PWPSP truly has PSP. Bernice's Ken is a

> good example. His autopsy came back MSA after 12years

> of thinking he had PSP.

>

> Also, my mom and have both been given the dx of

> possibly having both diseases.

>

> Again, welcome e.

>

> Connie in Alabama

> Mother 72 deceased 11/11/00

>

> __________

[Guest guest]

Pam

In Europe there is to be a trial involving Riluzol starting early next year,

to see if it will slow progression in MSA. As I think I have posted before,

there is also going to be a study into the natural history of MSA - the hope

is that this might help in understanding the cause.

England

Re: Information Exchange for Parkinson's Plus Disorders

>snip.. Given that these two proteins, tau and

>alpha-synuclein, seem to be involved in virtually all of the

neurodegenerative

>diseases including Alzheimer's and Parkinson's I'm hoping researchers will

>include Parkinson's Plus patients more often in their studies. If anyone

>hears of a new drug study please pass it along. I'm looking forward to

more

>information exchange among our groups.

>

>Best regards,

>Pam