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Multiple System Atrophy – A Devastating Diagnosis

Multiple System Atrophy – A Devastating Diagnosis

by | Nov 29, 2016 | MSA-Blog

by Cyndi Hungerford (in memory of Mark J. Hungerford)

WE NEED YOUR HELP TO REACH OUR GOAL! and to Defeat Multiple System Atrophy!

Our story began with odd symptoms in 2008 when my husband Mark thought he was walking funny in his boots then on a motorcycle run he nearly lost control of his bike going around a corner. Knowing something was wrong, we started seeing doctors. Doctor after doctor, test after test we were told there was nothing wrong. Finally, after being very persistant for an answer we got a diagnosis of Cerebellum Ataxia. Knowing we could live with that we would just have to adjust our lives to handle the condition.

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Then he started developing new symptoms. He became very dizzy, had double and blurred vision, digestion problems, swallowing problems, dysfunctional bladder and then ended up with a permanent Foley catheter. He lost his ability to walk, talk, write & had constant headaches. Pain in his legs all the time on a daily basis with severe edema! Low blood pressure that was hard to regulate causing him to nearly pass out upon standing, then severely high blood pressure, difficulty breathing, severe Sleep Apnea causing him to stop breathing 19-24 times an hour and the list goes on and on.

Finally his doctor said there was something else going on so there were more tests and then they found it in his brain scan. The doctor explained to us the Cerebellum in the brain should be thick & dense, about the size of a large grapefruit, but this disease causes it to shrink and at his diagnosis it was the size of a 50 cent piece causing his body to fill the empty space in his head with spinal fluid making his head feel sloshy all the time. He couldn’t handle sudden movements at all. He had MSA, Multiple System Atrophy, a cruel degenerative disease with NO CURE!!! We wanted a second opinion so we went to Mayo Clinic in Rochester MN. After 2 days of nonstop tests we got the same news… MSA!!! In the spring of 2013 our whole world changed with this diagnosis!!!

We were devastated!! My husband was a strong man with his whole life ahead of him yet he lost everything, his hopes, his dreams, his dignity. He was completely dependent on me. I cared for him every day 24/7 until October 18th, 2016 when he made his final home in Heaven. We need answers about how to find this earlier and understand it so we can know how to treat it and STOP THIS DISEASE!!

We need a cure for multiple system atrophy!!!!

Please continue reading about what we are hoping for during the MSA Coalition’s Holiday Challenge Fundraising Campaign. PLEASE DONATE TO CURE Multiple System Atrophy!!!! PLEASE HELP US SO WE DON’T LOSE MORE LOVED ONES TO THIS DISEASE… IT COULD EASILY BE YOU OR A LOVED ONE… PLEASE HELP!!!! ANY DONATION COUNTS… IT ALL HELPS!!

>>>>>>> GOD BLESS YOU ALL <<<<<<<<<

* HAPPY HOLIDAYS *

Start your own CrowdRise Holiday Challenge MSA Fundraiser! It is very easy and takes about 10 minutes!!!!

 

 

 

Multiple System Atrophy – A Devastating Diagnosis

To All of Us

by | Dec 20, 2015 | MSA-Blog

A Guest Blog Post By MSA Patient, Dan Gallivan

To All of Us,

The MSA Coalition and some 75 Individuals have done an outstanding job of collecting $106,000 in donations from family, friends, and co-workers. The $106k will be matched through the generosity of two families.

There is a problem, we are leaving $46k on the table and with the match it becomes $92k.

Dan-gallivanI was sitting in the quiet today, not feeling well and was thinking about the $46k our group needs to collect in order to get the whole match. As an individual I don’t know how to come up with $46,000. I was only able to collect $2900 in donations. I have not stopped, I am trying to do more.

Folks we cannot afford to leave this much money on the table. We need it for research. If not for us, then for the folks that come after us. But I prefer it be for us.

What came into mind was this statement “Just Ask”.

“Just Ask” for the donation. So as a “Group” if we just ask our friends, relatives, ex co-workers, a few wealthy individuals, we may be able to close the gap on the $46k.

So here is the plan of attack, each one of us will “Just Ask” for a $500 donation. Don’t be shy, “Just Ask” we need to be successful with only 92 donors to hit the $46k mark. Out of all of us that are reliant on the MSA Coalition I suspect there are more than 92 of us. So all of us need to “Just Ask” until we have 92, $500 donors, or, 115 donors donating $400 each, or 153 donors donating $300 each, or 230 donors donating $200 each or 460 donors donating $100 each. From there it is 614 @ $75, 920 @$50 and 1840 @$25. Or a combination of all of the 7 groups.

We can do this. We have until January 7th 2016 to get it done. Let’s help our friends at the MSA Coalition reach 100% of the match. Besides it all benefits us. So we need to get this done. We need the research dollars.

Now, I am praying hard that I do not offend anyone. It is not my intent.

Please listen, we are the experts, who else is better equipped to explain to a donor what their donation means to us. We are living this nightmare. What it also means, is a trained staff, ongoing research, support groups, reading materials, professional speakers, conferences bringing doctors and researchers together, linking the UK and Japan with us. We need this money, let’s go out and “Just Ask” for the donation.
If you do not have an account set up you can use my CrowdRise account; just click on the link below: : https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/danielgallivan.

Please accept my apology if I have offended anyone.

God Bless Us all;

Dan Gallivan

PS: For more ideas on how to fundraise see these MSA blog posts: