Thank you to everyone who has emailed me or commented to offer their condolences. It means a lot to me and my family to know that others have been there or just that they're thinking of us. My Dad has suffered from Multiple System Atrophy (MSA) for several years, so this wasn't entirely unexpected. But it's never easy to lose a close family member.
As a thank you and as a tribute to Dad, I'm going to support the National Dysautonomia Research Foundation by donating $1 for every comment this blog receives between August 23 and September 30 (up to $500). Instead of just writing a check, I hope to raise a little awareness, too.
Lack of knowledge about MSA poses a major challenge to patients and their families. We know that the disease causes hypotension, failure of muscle coordination, and other symptoms, but there's next to nothing known about why people get it or how to treat it.
MSA doesn't have a celebrity spokesperson, an awareness month, or a network TV special, so my understanding is that it's tough to get funding for research. All you can really do is try to make the patient as comfortable as possible, as they slowly wither away. We did our best with Netflix, BookSwim, and frequent visits.
My Dad was a Renaissance man who committed himself to science and philanthropy, so I know he would have wanted me to support scientific research on MSA. Thank you again for everyone's emotional support.
Monday, August 25, 2008
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29 comments:
Hey Susan. So sorry for your loss. I love the tribute that you have made to your father via your blog. I am sure he would be very proud!
Susan,
My dad was the same way. Unfortunately, none of the doctors knew what he had, or how he got it. We will keep you and your family in our thoughts and prayers.
Donating to MSA is an amazing thing to do at this point in time. I am sure you father would have been proud.
Susan,
This is a wonderful way to pay tribute!
Leave it to you, the girl of so many amazing ideas, to come up with something so fitting to honor your dad.
My condolences, Susan,on the death of your father.
I think your father would be proud of how you're honouring him. Thank you for sharing with us.
Susan, I'm so very sorry about your father's passing. I'm posting my thoughts here to help add to the MSA fund. Parents are our strength for so long in our lives we sometimes forget they have limited time here, as well. God bless him, and may your family find strength and comfort in the warm memories he's blessed you with.
Hugs, sugar.
I'm so sorry about your dad, Susan. Our thoughts and prayers are with your family.
Wonderful idea Susan. What a fantastic way to honour your dad!
Please add my comment to the donation pile. And let us know of there's anything else we can do.
What a great way to honor your dad. Hope you and your family are doing okay.
Susan,
This is a great tribute to your father and an excellent way to raise awareness. I was not familiar with MSA so you've educated at least one person.
Firstly, I'm sorry for your loss.
Second, my friend in Jersey was one of the co-founders of the site Bookswim, it's a small world after all *sings*, I actually edited their business plan.
Good luck with everything.
Susan-
What a great way to honor your dad! My thoughts and prayers are with you.
Lisa
You're accomplishing good...I too had never heard of it and now am glad to help.
Take care.
This is my first time ever hearing of MSA, so you have already increased awareness of the disease. Thank you.
SUSAN,
I'M SINCERELY SORRY TO HEAR ABOUT YOUR LOSS!
I (and my family) AM GOING THRU THE "CHALLENGING PROCESS" OF DEALING WITH A PARENT WITH MSA! MY FATHER WAS DIAGNOSED IN 2004 AND WE HAVE UNFORTUNATELY WATCHED AS THIS CRUEL DEGENERATIVE DISEASE SLOWLY (yet prematurely) STEAL HIS LIFE AWAY!
WE ARE FORTUNATE HERE IN THE PHOENIX AREA TO HAVE THE MOHAMMED ALI PARKINSON CENTER. FROM THAT CENTER, WE HAVE GAINED ACCESS TO A MEDICAL SPECIALIST IN THE AREA OF MULTIPLE SYSTEM ATROPHY (MSA).
WE HAVE MADE MY FATHER'S 'NEW LIFE' AS MEANINGFUL AND JOYFUL AS ONE CAN IN DEALING WITH THIS DISEASE!
I WOULD BE HAPPY TO SHARE ANY INFORMATION & KNOWLEDGE & ADVICE I HAVE THAT ANYONE NEEDS TO ASSIST ANYONE WITH MSA!
AGAIN, SORRY FOR YOUR FATHER'S LOSS, HOWEVER; IN BEING 'A CONDUIT' IN FACILITATING HELPFUL INFORMATION ON MSA IS AN EXTREMELY WORTHWHILE CAUSE! YOUR FATHER WOULD BE MOST PROUD ... MY FATHER INSISTS ON BOTH HE AND I ASSISTING OTHERS (and their families) WITH THEIR CHALLENGES WITH MSA!
FROM SCOTTSDALE, ARIZONA
Thanks for your comments and especially snailmail. I'm so sorry your father is struggling with the same illness. It's a terrible thing to have, but at least it reminds you to treasure the time you have together.
I had never heard of this, either, Susan. Thank you for sharing with us and helping us understand. My heart aches for what you're going through.
*hugs to you!*
Michele
This is a lovely way to honor your dad's memory . . . and to possibly help others in the future.
Thank you Susan. I'm posting my thoughts here to help add to the MSA fund. I had never heard of MSA before I read your post, and I'm humbled to learn about it through your dignified and heartwarming tribute.
Keeping you in my thoughts at this difficult time.
I'm so sorry for your loss. A father is an awful thing to lose.
My thoughts are with you and your family. I'm so sorry for your loss.
What a good idea to raise money and awareness for MSA.
Hope you're doing okay.
What a great memorial for your father! He would be proud!
I'm so sorry for your loss. This is a great way to raise awareness and I'll post about it on my blog, to hopefully get others to come out here, too.
Steph
Susan,
I'm so sorry about the loss of your father. This is a wonderful tribute to him. I'm sure he would be so happy about what you're doing.
Please accept my condolences on your father's passing. I am so sorry. Your tribute to him and way of raising awareness of MSA (and funds for research) is great. Kudos to you for that.
Hi Susan,
What a beautiful way to honor your father. Thanks for sharing this with your readers and giving us an opportunity to help you raise funds and awareness.
I am so sorry for the loss of your father. My brave brother is currently battling MSA. MSA is a wretched disease which can be stopped with awareness and research. Thank you for sharing your story!
God Bless!
Thank you to everyone called/emailed/commented, especially those with friends or relatives also suffering from MSA.
For those who don't follow my blog on a regular basis, I wanted you to know that I've donated the full $500 out of gratitude for all of the kind words I've receieved. Thanks again for participating!
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