To the Group and Aletta

[Guest guest]

Aletta,

Thank you for issuing that reminder: We still desire to keep our

dignity in tact when we are sick.

I grieve with you.

Peace be with you,

Zac

_______________

> I have lurked in the background for about a week. to see if

hanging in

> just for information etc. would still have a positive impact on how

I cope

> with my neuro-degenrative disease (I've made it generic, so no one

needs to

> be offended, by anything'atypical'). Regretably (I speak only for

myself)

> I've not found it to be useful to be a silent member. If anything I

find it

> often painful not to be able to pose questions, since many of them

draw

> only criticism and not useful information. Although it is all very

nice to

> witness that there are options for treatment of symptoms, it is

often

> ignored that not all who suffer have access to them, due to

geography,

> poverty or other factors of access. Something as simple as an

effective

> laxative which is not sold everywhere, or support hose hard to get

hold

> of. The advice of this test and that test cannot be applied to

people

> (equally deserving) when again these are not available.

>

> Not all of us have caregivers, social workers, specialists to rely

on. To

> be criticised for coping alternatively is at best hostile and

certainly

> disrespectful. To be held to an arbitrary expectation of when we

shall

> lose this or that ability, and worse the expectation of life ending

in

> seven or so years as a certainty, when indeed others have surpassed

it, is

> downright cruel. Holding on to even the slender possibility of

making it

> beyond that expectation as Harriet and Anne have done has done me

the most

> good while being here swapping stories. I took from it that if

Anne can

> still stand, I have no excuse not to do the same. So far, that is

working

> nicely for me.

>

> Certainly when a cure comes to light, some will have access to it

and

> others not. That is reality. Much of research also ends in abject

> failure, the loss of money spent is passed on to the next study -

while we

> know with certainty that lab rats can be given cancer by

researchers, cures

> elude. Personally (that means it is my opinion, please don't be a

Lemming)

> I'd like to see more research done on the healing properties of the

human

> spirit. Since I can afford the human spirit, I will keep on

painting,

> dancing (if only in my mind), writing, gardening, loving, singing,

> decorating, rejoicing and grieving. I will philosophise, and

worship as

> the spirit moves me and find beauty in all there is (even if it

takes a

> microscope or an exceptionally strong stomach). I will laugh, fall

and

> rebound. The rest I leave to my physicians and my own ability to

make

> choices based on information given and sought.

>

> Sharing is a large part of the human spirit, I have made friends

here and

> hope for a long time to share with them for as long as they

choose. It was

> a huge relief to be able to discuss having your bowels let go in a

public

> place and find there were others who had survived the same (one

example,

> there are as you already know many more). It was valuable to see

the

> caregiver side, helping me make up my mind not to pursue a certain

(this

> one is private) relationship, because I could not face putting

anyone or

> myself through it. It allowed me to weight how much to share with

family

> and friends and what to keep to myself, because I could contruct

what would

> happen if... in a much more informed way.

>

> I am very dissapointed in being expected to hold back my

experiences and

> feelings, because thought they are true, it is felt my experience

is more

> likely to cause harm to others. Since my variation of

neurodegeneration

> does not conform to standard held understanding it invalidates

anything I

> might have to say. Plainly I joined because it was " shydrager'

group,

> which is what I was told I have, but found much confusion and

little

> clarity regarding what illness was actaually being discussed. I

was not

> told I had Parkinsons (that has still not manifested), and I was

told it

> was not PAF. Some of my symptoms took hold after I had a 'likely

> stroke' imaging was done almost a year later and it could not be

> verified. I lost my sense of taste, ability to speak (therapy

helped here,

> which I did with the help of my sister, an RN in neuro, because

therapists

> were not available to me) and all basic bio-rhythms (sleep, hunger

etc.)

> and gained a relentlessly high heartbeat. This 'episode' however

was

> caused by autonomic failure. I struggled alone unable to put a

name to

> what I had, Shy-Drager had been mentioned as long ago as four

years, but

> there are no tests to verify conclusively, until autopsy (no

rush). When

> asked, I tell people I have a neurodegenerative illness which

primarily

> attacks the autonomic functions (a bit hard to get out at times)

>

> On veneration of Engineers. No problem, my grandmother was an

engineer

> (design of diesel engines, Holland-Amerca line), my uncle followed

in her

> footsteps. She died before I was born, her name also was Aletta.

Her

> husband (grandpa or Opa) was an artist and musician who liked doing

faux

> paintings in grand homes, he died of Parkinsons at age 52, months

after Oma

> died of stomach cancer. The private nurse the family hired was my

> mother. Enough personal stuff - I think all people are worthy or

respect

> and everyone has a wisom or two up their sleeves, regardless of

social

> standing, gender, race, cultural background, faith or lack of it,

sick or

> healthy - to actually think anything else (this is a personal view,

I'm not

> a sheep, so sue me) is repugnant and offensive. Equally offensive

are the

> people who let them get away with it.

>

> Certain of the neurodegenerative diseases impact the thought

processes

> (lewey bodies, Alzheimers some Parkinsons) to varying degrees.

Mine

> (whatever it is) like many here does not. I am everybit the person

I was,

> I feel as I did, I ruminate as I did, I continue to learn and grow

> intellectually, the same with many of the others. The body however

is out

> of phase, I have four year old hands, three year old toilet

problems, five

> year old speech (at times), I grapple and wobble like a child still

new

> with the walking thing (I do better crawling at times) - but I am

not a

> child - so I resent being patronized, parented and condescended

to. I long

> ago achieved the legal right to sign contract, make decisions and

even

> vote. I have the mental agility to take in information, and based

on

> information and the complexities of my own body/mental

understanding make

> decisions regarding my well-being. So do other patients on this

list. The

> ability to do this is not influenced by the gender, culture,

ethnicity,

> eduation, econoimic status and faith of the individual. To me

(again,

> personal belief) it should never be inferred otherwise. When I

lose the

> ability to communicate because my speech and writing are gone, I

will feel

> no differently. I only hope that those around me will have the

sensitivity

> to understand the need to be treated with respect and dignity, even

if you

> are the subject of an enema, or need diapers changed.

>

> All this has awakened me to the very great need for me to put into

place a

> legal document so foolproof and airtight that any misintepretation

of my

> actual wishes is rendered impossible.

>

> The hostility of my knowledge and understanding trumps your

knowledge and

> understanding, is a childhood bully game I've grown out of. Even

so, on a

> day I feel defeated by symptoms and loneliness, it is hurtful and

damaging

> to the spirit, to then have someone take you to the mat 'off-line'

more

> hurtful still. When no-one made it stop I knew that others must

have felt

> as hurt as I when similarly thier treatments and diagnosis was held

up to

> question. So on my behalf (not anyone elses) I protest this unkind

> treatment of myself and anyone else subjected to it. Not very

sporting to

> make accusation without having it witnessed (that concept is

familiar to

> people of various faiths). I feel (note my feelings, I don't bring

others

> into it and speak for no one else) that inferring what I said would

kill

> people, I was pushing people into 'illegal' drug use, and I was

wholly

> unqualified to make any staatements on this illness because I don't

meet

> the criteria, all without directly quoting anything I had actually

written,

> and then to boot be told I should no longer mention 'painkillers'

and just

> to let it go - whew - was offensive and judgemental. To anyone who

did not

> on their own figure it out, this was not the first time accusations

and

> insulting remarks were made to me, it simply is the last straw.

>

> I had asked Pam to recommend another support group who might accpt

me

> despite my 'atypical' symptomology, but no answer was given. If

some does

> know of one I'd be deeply indebted if you could share that with me

> (alettames@l...). To anyone, if you need to blow of steam or just

be

> heard and are afraid to, I will listen, you can do it anonymously,

but for

> goodness sake do not hold it in, I have for the past week and it is

> devastating. Those who would just like to criticise and be

insulting, keep

> it to yourselves.

>

> Now, to my great grief, goodbye, I wish you all (even the ones of

if you

> who hurt me) well.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

>

> imagine the worst it could be and delight that it is not yet so