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Enrys

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Joined
Feb 17, 2017
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Country
CA
State
Alberta
City
Edmonton
Good day everyone,

I have joined the ALS society because well it is a cause that is near and dear to my heart. In grade 8 I wrote a paper on woman who asked for the right to die with dignity as this extremely painful degenerative disease took her life. Her story impacted me on so many levels, the failings of our helathcare systems to protect and "cure" those who need it most. By the failings of churches and religions to forgive those who are asked to live a life of pain and suffering who want to return to a higher power but are told they are sinners and are committing an act of sin. Is it not a sin to divest research resources, force people to live in suffering, not provide real and needed IN HOME SUPPORT SERVICES like cooking and cleaning? What about wiping and washing? Money is a huge barrier and we are seeing more and more of these services become unreachable in Canada. As well we are told, if you can't pay for them you must have failed in some way without recognizing the real lack of 1) earning opportunities 2) family supports 3) community supports 3) society supports. Just basically the overall failings of us as a human race to accept, nurture, love, and care for people who need it most!

Please do not misunderstand! My anger, frustration, and sadness all come from a place of right to life with as little pain and suffering as possible. Each and every HUMAN BEING with ALS has a right to live their life, in the way they want and choose, without interference from healthcare, churches and/or religion and just generally those around them who don't know or understand and often just don't bother to listen, hear, see, feel, smell, touch and learn!

And that is why I am glad you are all gathered here today, to talk, to question, to engage in real answers and solutions! So keep it up and I will work to remain positive in the face of adversity!

I am non practicing Social Worker in my province of residence and I am reconnecting with people and issues related to my chosen field of profession.

I thank you for welcoming me, providing support to those who need it, and just giving a safe space and place for people to connect, support and just be together VIA the internet. Thanks for the beautiful PHP forum design.

Because I do not have ALS or a family member or even someone on my caseload who I need to provide resources and support to, I will respect the privacy of the forums and stick to what I came here for. To offer a power-chair from my uncle.

I look forward to hearing about the latest medical advancements so that the health of people affected by this disease is greatly improved. Hope that the offering from my uncle will just make someone's life easier and more manageable.

Thanks for having me! Maybe we will see my in disability supports later!

Take care,

M
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,399
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Replies that addressed religious issues have been moved to the religion section
 
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