The Myasthenia Gravis Association of WPA

Providing HOPE until there is a Cure

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Come visit us at The Senior Expo in Allison Park, PA 9/19/14!

We hope to see you tomorrow at the Senior Expo sponsored by Senator Randy Vulakovich and Representative Hal English as we raise awareness for Myasthenia Gravis!

Friday, September 19, 2014

Allison Park Church

2326 Duncan Avenue

Allison Park, PA 15101

9:00am until 12:00pm

We will be bringing our Dynamometer and testing your grip strength!  The Dynamometer is used in our weekly Treatment Center to help track the trends of strength and progress in our patients.  We will also be sharing information about Myasthenia Gravis and the programs we provide.

"The event is a great opportunity for senior citizens and their families or caregivers to obtain a wide variety of information pertaining to programs and services that may be beneficial to them. Flu shots will be provided by Rite Aid to attendees age 65 and older who wish to obtain them dependent on availability from the manufacturer. Those wishing to receive a flu vaccine must present their Medicare card.  

Please contact Senator Vulakovich’s office at (412) 487-6600 or via the website at www.senatorvulakovich.com for further information.”

Filed under MGAwareness Myasthenia gravis outreach education

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Myasthenia Gravis Support Group 9/20/14, Pittsburgh, PA

mgawpa:

Remember to RSVP for this Month’s Myasthenia Gravis Support Group Saturday, September, 20th!!

The meeting will be held at the Singer Library, 1st floor, Allegheny General Hospital from 1:00-2:30pm.

Please RSVP by email (mdulashaw@mgawpa.org) or by calling 412-566-1545.

If you would like to bring a refreshment or snack, please state what you would like to bring when you RSVP.  Free Parking is available in the James Street Garage.

Don’t forget to RSVP to our Myasthenia Gravis Support Group this Saturday!

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Myasthenia Gravis Support Group 9/20/14, Pittsburgh, PA

Remember to RSVP for this Month’s Myasthenia Gravis Support Group Saturday, September, 20th!!

The meeting will be held at the Singer Library, 1st floor, Allegheny General Hospital from 1:00-2:30pm.

Please RSVP by email (mdulashaw@mgawpa.org) or by calling 412-566-1545.

If you would like to bring a refreshment or snack, please state what you would like to bring when you RSVP.  Free Parking is available in the James Street Garage.

Filed under Myasthenia Gravis support group Pittsburgh pennsylvania

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Special thanks goes out to the Federal Credit Unions (FCU) that participated in this years “Butterfly of Hope” campaign for Myasthenia Gravis Awareness month in June, 2014!  We couldn’t have done it without one of our board members spearheading the campaign.

For the campaign, each FCU received packets of MGA of WPA Butterflies that would be given with a $1 Donation to patrons and displayed in the office with the donors name.

Thank you for your help in raising awareness for Myasthenia Gravis and assisting us in our mission to keep helping those affected by the disorder for nearly 60 years!

If you would be interested in participating in the “Butterfly of Hope” campaign for June 2015, please contact our office for more information at 412-566-1545 or email DonnaK@mgawpa.org .

Thank you to the following FCU’s:

West Aircomm FCU - Beaver, PA

Blackhawk FCU - Beaver Falls, PA

Freedom United FCU - Rochester, PA

New Alliance FCU - Ambridge, PA

West Penn P&P FCU – Beaver, PA

Shenango China Area FCU -  New Castle, PA

A & S FCU – Middletown, PA

Filed under Myasthenia gravis chronicillness

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My MG is kicking my butt and I don't know what to do about it :/

demure-essence:

mgawpa:

demure-essence:

The end part of yesterday was really bad for me. I got up with so much energy and optimism and ended on such a discouraging note. I just recently moved into my new apartment which I was excited and nervous about. I was ready to be back in my own space and experience something different other than…

Have you ever read The Spoon Theory By Christine Miserandino?  Check it out here: http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/.  I think it is a lovely way to better understand your MG or explain it to others.

As far as your neurologist goes and your symptoms, have you ever kept a symptom journal/diary?  Keeping track of when you take your meds, how you feel and what activities you do throughout the day is a great resource in helping you and your neurologist nail down how to contour your treatment just for you.  After all, you are a “snowflake” and no two can or should be treated the same way.

Besides taking frequent rests, have you tried trying to keep yourself cool with ice water, sucking on ice chips or even a cold compress around your neck?   It’s not a heal-all, but sometimes lowering your core body temp. can help with some symptoms.  As far as ways to make it easier to get around campus (hopefully you get the assistance from the school), do you have a lot of books to carry around?  Getting a case on wheels that you can put your items into will help you get around campus better.

Please don’t feel ashamed of asking for help (getting the assistance from the school or a handicapped placard).  You are doing something amazing by trying to further your education. You are an MG Warrior!   To succeed in life, we all need help of some sort from others.  -Michelle

Thank you so much for this post. I read “The Spoon Theory” and got a little teary eyed because I’ve never read anything that explains what I’ve been going through the past year or so as perfectly as it did and it was so nice and refreshing to know that I’m not alone in how I feel. I’m also glad I have a way of explaining how I feel to family and friends now.

I’m actually in the process of getting referred to a new neurologist in the city I go to college so I can have more regular visits instead of having to wait 4 (or more) months between visits since I’m hardly home because of college. I’m going to begin to write down my symptoms to show my new neurologist and see if this helps him or her get me on the road to remission so thank you for that suggestion as well.

I don’t know many people with illnesses similar to mine (other than my mother who has Lupus) or any illnesses at all so everything you’ve suggested is much appreciated and I’m going to try out. I’m learning to let go of the shame and disappointment I feel in myself because of my disease, but it’s so hard sometimes when I see others my age living life the way I used to while I can’t anymore. It’s all a process I suppose and I’ll get there soon enough :)

Glad I could help!  Please let me know if you need any further information!  We have a lot of information to go through on our website and all of our past newsletters are archived there as well! - Michelle

7 notes

My MG is kicking my butt and I don't know what to do about it :/

demure-essence:

The end part of yesterday was really bad for me. I got up with so much energy and optimism and ended on such a discouraging note. I just recently moved into my new apartment which I was excited and nervous about. I was ready to be back in my own space and experience something different other than…

Have you ever read The Spoon Theory By Christine Miserandino?  Check it out here: http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/.  I think it is a lovely way to better understand your MG or explain it to others.

As far as your neurologist goes and your symptoms, have you ever kept a symptom journal/diary?  Keeping track of when you take your meds, how you feel and what activities you do throughout the day is a great resource in helping you and your neurologist nail down how to contour your treatment just for you.  After all, you are a “snowflake” and no two can or should be treated the same way.

Besides taking frequent rests, have you tried trying to keep yourself cool with ice water, sucking on ice chips or even a cold compress around your neck?   It’s not a heal-all, but sometimes lowering your core body temp. can help with some symptoms.  As far as ways to make it easier to get around campus (hopefully you get the assistance from the school), do you have a lot of books to carry around?  Getting a case on wheels that you can put your items into will help you get around campus better.

Please don’t feel ashamed of asking for help (getting the assistance from the school or a handicapped placard).  You are doing something amazing by trying to further your education. You are an MG Warrior!   To succeed in life, we all need help of some sort from others.  -Michelle

Filed under Myasthenia Gravis chronic illness