Hi from Pam Bower

Here's my MSA story

Written by pambower, published over 2 years ago.

Hi from Pam Bower

I'm thrilled to be a member of this Rare Disease Community and am looking forward to connecting with many more people from all around the world in multiple languages.

I live in Halifax, Nova Scotia, Canada. My mother-in-law, Ida Comeau Richard who I adored, was diagnosed as OPCA (MSA-C) in 1994, she passed away in 1998 at only age 55.

I have been active with online support groups for MSA since 1995 when at Ida's request I searched for more information about this puzzling disease she had been diagnosed with. In my journey I discovered others looking for the same information and was happy to share what little I had at the time.

I'm currently a moderator of the original shydrager MSA online support group that I had joined back in 1995. http://groups.yahoo.com/group/shydrager

Since 2010 I've been an admin on Miracles for MSA which has very quickly become a rallying point on facebook for MSA Awareness activities. http://www.facebook.com/Miracles.for.MSA

As well, I maintain the MSA Awareness website with what I feel are some of the most useful and relevant links for MSA information. I hope to be able to share some of this information on this site as well. http://www.MSAawareness.org

My passion is connecting people who are looking for support and information about this disease. I can hook you up if you need MSA info or are looking for someone from your area who also is interested in connecting.

Email me anytime at pbower@accesscable.net

Remember March is Multiple System Atrophy Awareness Month!

Written by pambower, published over 2 years ago.

7 comments for «Hi from Pam Bower»

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  • Ritje | published over 2 years ago | Originally written in English

    Dear Pam,
    I suppose this was a pleasant surprise for you. I'm sure we will continue working together as we do since a couple of years, in our battle against MSA.
    You are the best Ambassador for us all
    Hug,
    Ritje.

  • maria1981 | published about 1 year ago | Originally written in Spanish

    My name is María Stella Díaz. I live in Bogotá, Colombia. I am 55 years old and, after multiple examinations, I was finally diagnosed with multisystemic atrophy six years ago. It began with night terrors and eventually I lost my equilibrium. Now, six years later, I am in a wheelchair and nobody can understand me on the phone anymore. I can still bathe on my own, and can go into the bathroom by supporting myself and taking four steps, but I've fallen and hurt myself. I watch TV, read the paper, use the Internet, and I put up the whole book where they read literature books on the internet. My e-mail address is stelladg@hotmail.com. I'm looking to talk to people like you who know what we experience and how we sometimes cry as a result. I watched the Carlos Cristos video and in the midst of my crying it gave me the strength to continue the struggle.
    Sincerely,
    Stella

  • pambower | published about 1 year ago | Originally written in English

    Hola Stella, Along with staying connected in this forum you may also wish to join the Spanish MSA group on facebook http://www.facebook.com/groups/MSASpain

    I'm glad you took comfort from the Carlos Cristos video. I knew him from his participation in MSA support groups via the web and email. I've seen his video but I do not speak Spanish, I would love to see that video with English subtitles one day. I have written the filmmaker many times regardling this but have never gotten a response however.

  • Me llamo Verónica, vivo en Argentina. Soy médica y me estoy formando para Neurología . Estaba buscando gente o un grupo que se relacionase con la Ams ya que tengo interés en ayudarlos y estoy pensando en crear una Asociación en mi país ya quese conoce muy poco y los enfermos y sus familias se hallan solos.
    Mi correo es veronica197389@hotmail.com o veronica_gp2001@yahoo.com.ar. para quen desee contactarse conmigo.
    Desde ya muchas gracias.

  • Miré la película de Carlos Cristo y justamente fué médico. Me emocioné mucho y también me dio tristeza. NUnca soy d ecreer que a nosotros no nos puede pasar porque no es así.
    Nos puede pasar así que debemos escuchar a nuestros pacientes
    Además aprendemos mucho con estas historias (no solo de los libros).

  • pambower | published about 1 year ago | Originally written in Spanish

    Por favor me acepta como amigo en facebook y te puedo conectar con otras personas con AMS que hablan español https://www.facebook.com/pam.bower

  • robpleticha | published about 1 year ago | Originally written in English

    Hola Verónica,

    There is also another member from Bogota that would like to get in touch with others in the area.

    Here profile is here: http://www.rareconnect.org/en/profile/mari...
    and email here: stelladg@hotmail.com

    If you ever have any problems or questions using this Community, please let me know.

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