I moved my ARM! It was like lifiting a car...
Thank you for responding to my last post. I read and smiled at each response.
This was an exciting week. For the first time in three months I got some movement in my arms. Check my video: https://youtu.be/azIb68CP2Qs
To me this felt like lifting a car.
I also passed a phrenic nerve study to assess a diaphragm pacer. The pacer will decrease my dependence on the vent and may lead to getting off of it all together.
I been practicing my driving skills... not a car, a chair! Won't break any speed records, but I can do it all myself. Short video here: https://youtu.be/W3jmUU7ODr4
I have also been thinking about the near future when I get home. Like you all, I had never heard of Acute Flaccid Myelitis(AFM) before I got sick. The CDC is concerned that this illness could become more widespread and not much is known about it. I would like to increase awareness of AFM through my story.
Last summer when I was at Berklee during the 5 week program, people were posting ice bucket challenges to raise awareness for ALS. I think it would be great to do a similar campaign for AFM. I was thinking people could take a photo of a sunrise or sunset with family, friends, or simply by yourself? #HealAFM
Also, I would like to host an event or show at the Sunken Gardens at the courthouse to share my story and showcase how the wonderful people of our community have come together to support me and my family during this time. You all have inspired me with your caring spirit and we can be ground zero to help all people touched by this illness. As I get more information on my return date, I'll share more details on this idea.
Let me know your thoughts!
Gracie
Comments (56)
What an excellent idea! Yay Grace! I bet your extraordinary supportive e-community can come up with some ideas as well. What do you all think? --Cousin Lisa
So many cool things in your message, Gracie! I saw your Grandmother Joyce out walking Brillo today. We all agreed that it is much too quiet at your house, and we all are holding the vision of your return. Cheers for your progress and and kudos for your spirit. Grace
It's so wonderful to see all your progress, Gracie! Keep up the good work. We would love to support your awareness campaign. What a great idea and a service to others.
Gracie, when you post these triumphs there is a buzz in the workroom at SBHS. Teachers are talking, sharing, so excited with your progress, and so impressed with your tenacity.
Absolutely we'll join you in raising awareness with #healafm . Is there a link you feel is best for explaining afm? I'll tweet a #healafm on FB and Twitter, but where do you want me to send people who want to learn more? This post hope site or elsewhere? Love to you Gracie. Hoping your day has some beautiful, unexpected blessings. :)
What a great idea, Gracie. I love seeing you moving your arm. I cried like a silly mom. I love you so much and I'm so proud of your progress. XOXO
So proud of you!!!! Love hearing all this good news! Can't wait to see you this summer! :)
Such a great idea! Can't wait to hear more progress...you are my hero!
Cheers, cheers, and more cheers for you Grace!!! All the Everetts are crying with joy at your news. Keep up your difficult work. We are very proud of everything you are and do. Love to you and your family- Mary Ann, Blair & Mason
You are an absolute inspiration!
That is stupendous, fabulous, wonderful, amazing, exhilarating... There are not enough words to describe how exciting it was for Jeff and I to see this morning. We are so so happy for you. We are behind you 100%. Patti and Jeff
Gracie - I am so happy for you and your progress. I cannot express in words how overwhelming joyful I feel. You are an amazing person to want raise awareness about AFM - I think it's a great idea! Keep being strong, Gracie, we are all praying for you!
You are extraordinary, Grace. Thinking of others when still in rehab yourself. You are impressive and inspirational. We look forward to your return home and to the Follies. Your emotional strength will benefit your physical strength. So happy about your progress and look forward to more to come.
Wonderful news! You are so inspirational and hardworking too. It must be so exciting to move your arm and to now learn to drive!! You are constantly in our thoughts and prayers, wishing you continued strength.
YES YES YES!!!
Gracie, I am crying with joy watching you move your arm! I can't wait to see you play your guitar again soon! I am so beyond proud of you and so encouraged by your progress and tenacity! We love the idea of increasing awareness of AFM and would love to help with any way possible. Keep us up to date on what we can do! Mae and Quinn have already left for school, but I'm going to text them with your amazing news! I know they will be as thrilled as I am! We love you so much! Keep up the fantastic work! Sending Love, Claire Pendergast
Wow, Grace! What a fantastic update!! You'll be racing around in no time - what a cool chair! (You'll need to get a little license plate with a clever saying.). ;-) I so look forward to your posts and read them to my family and some of my students. We all love you and continue to pray. Hugs coming your way!
Oh Gracie - so proud, so excited! As I said my prayers for you this morning I had no idea I would be greeted by you moving your arm when I switched on my computer. We send all our love and hurrays. And we stand ready for whichever and whatever plan you want to implement to spread the word. Love, Alison
This is SUCH wonderful news!! You truly inspire me and my family. Thank you Gracie for continuing to post your progress, as I read it to my family every time I get an update. We always pray and send many positive, healing thoughts your way. Go Gracie!!! You are amazing!
Goooooooooooo Gracie!!!! This is great news :):):) Keep up the good work and DON'T EVER GIVE UP. We can't wait to have you back in SB surrounded by all your fans.
Wonderful news Gracie! We are so happy for you. Keep up the good work-- your determination is incredible. Sending hugs to you and your family from Amanda and the Yonker clan
Grace - Just say the word and I'll be there to help. Leslie
You go Gracie! The whole Saldamando Family is cheered and truly inspired by you!
Wonderful update, Gracie! I am thrilled that your phrenic nerve is strong enough for a diaphragmatic stimulator. That can REALLY help strengthen your breathing and get you off that vent! And good job with your motorized chair driving! It is waaay tricker than it looks - even with normal arm and hand strength and coordination. I can't wait to meet you - in less than two weeks! (I'm coming out to Denver to visit my daughter and her fiance for Easter weekend, and will be dropping by to see you and your Mom - probably Monday, April 6.)
Gracie, way to go (literally)! I love your ideas. Perhaps you and Emily can write a song about your journey that will be inspiration for research and hope for families of AFM patients. Meanwhile, lots of love coming your way, Nan, Dave and Kai
OMG Gracie!! YOU ROCK! That is WONDERFUL news and watching you move your arm is so exciting...keep up the hard work and know that we are thinking about and sending you positive thoughts and love to you everyday! We are planning some wonderful events on your behalf for next month and in May. I'll send your mom all the details and if you have any suggestions or ideas, feel free to let us know! The event/show sounds beautiful so know that we are here to help you with that...whatever you need. Rayanna, Scott and Cadyn
Reading this brought happy tears to my eyes. You are truly amazing, Gracie! I love your ideas!
To Our Gracie Girl, OK, last time I posted that you had made my year with all the effort you've been putting in to get better and seeing you do it with your beautiful smile on your face. I did include the caveat then of "made my year-- so far." Today's news tops your last post and I know they are going to keep topping the previous post and continue "making my year!" What an exciting and encouraging and interesting post from you today!! Congrats on your awesome progress toward getting better and better and I love the idea of the AFM challenge and you as the spokesperson!! That is absolutely brilliant and awe-inspiring and let us know what we can do to help! Can't wait to get your updates and posts and can't wait to see all the Fishers again. Love to y'all. Dan and all The Foxes.
I loved watching the videos -- what fantastic news on your progress! You are such an inspiration, Gracie. Much love to you, Emily, and your mom and dad. ~Martha Hogan, Siena, and family
I'm grinning ear to ear watching these videos. You have come a LONG way Gracie! Your hard work is working!!! I have no doubt you will be flipping cars in the future. XO
First off, YIPPY!! That is for your arm lift and continuing efforts at independence sweet girl. Second, I TOTALLY applaud your challenge idea. Especially since it doesn't require any resources other than our beautiful, abundant Sun. Please keep us posted on when this will start, I'm anxious to spread the word. Be blessed!
YAY YAY YAY GRACE!! We are so excited for you! Keep on pushing forward!! You are constantly in our prayers!! You are so AMAZING!! I told your mom I have a friend in SB I want you to meet when you get back - you may already know him - he is an inspiration and very into music also - He is the DJ of Ability! Sending you a big hug from Florida! I LOVE YOUR SUNSET/SUNRISE photo idea!! Keep us posted :-) When our whole family is together over Easter we will take a picture/video! Kiss your Mom, Dad, and Sister for us too!! xoxoxoxo The Hortons - John, Joie, Jaclyn, Jayna & Joe
That is sooo exciting!!! Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Made my day!!!
Gracie, that's really good news.
Dear Gracie, Great videos. I gasped when I saw you move your arm. Am hoping that your healthy body will fully recover from this virus, just like my Dad fully recovered from polio. It CAN happen. Thank you for sharing your progress. I love your ideas for sharing your story and increasing awareness of AFM. I look forward to hearing more details on your ideas. Keep up the good work!
Gracie, I love your ideas for #HealAFM and can't wait to have you all back home! Thank you for sharing the videos. We were all jumping for joy this morning in the kitchen when we saw your mad skills at arming and chair driving. (I miss seeing you around and think it's you about 10 times a day when I see a car like yours) Last week I had a dream you were walking in a crowded school hallway, or maybe outside the Marjorie Luke in SBJHS. It was like a movie with no sound (kind of like your youtube video), and I was so surprised and delighted to see your eyes light up and big smile on your face as you moved through all the other kids. YOU WERE SWINGING YOUR ARMS. It was really powerful and beautiful to see. We love you all so much! Keep up the tremendous work and all the amazing, creative planning and dreaming you are doing. Holding you in our hearts and constant prayers. XOXOXOXO
Wow Gracie. You are so amazing and incredibly inspirational!! To have your attitude and your strength is what the rest of us aspire to. I am so happy for your progress and I can't imagine how physically difficult it all is. Bless you for wanting to helps others and you certainly will. I think about you and pray for you daily. Again you are amazing!! Love Amy Andersen
Gracie, you are a true inspiration to us all. You go girl!!!! Gloria, Bruce and William Belfiore
Hi Gracie! I have been following your blog closely over the last couple of months, and wanted to give you a big SHOUT OUT from NYC. Whenever you start at Berklee, you'll be close by. I send love and healing thoughts your way daily, and won't stop anytime soon. I'm really happy to hear YOUR voice on this site (I mean…moms and dads are great and all, but we all have been wanting to hear from you the most). Your progress is amazing. Your tenacity, grit, resilience, faith, and (forgive my French/censor this post) general bad-assery is a combination that most people do not demonstrate in a lifetime. Debbie, Bill, Emily: I'm also sending all the positive energy I have to you! ---Shannon
Excellent news Gracie, I love seeing your arm move! You are a pretty god driver, too! I am so encouraged by your desire to step-up and promote awareness of AFM, you really are an inspiration for me. Sending love to you and your family!
I can smell the sweet scent of INDEPENDENCE!! Way to go Gracie! So proud of you & all the hard work! Please give us more details about your #healafm idea - so we can get spreading the word! Much love The Gaitans
Gracie, you are an inspiration to us all! There is such a strong spirit in you & I love that you are planning for how you can help others while you are still in the healing process yourself. God put you on this earth to do BIG things and to touch millions! David send you his love & prayers. Keep posting and confessing total recovery and we stand in agreement with you! <3
Your strength and perseverance is amazing...results are happening. We are all so happy to hear about your progress...
Gracie....what a wonderful sight to see you moving your arm...we are so proud of the hard work you are doing. Your idea also sounds great! Keep working hard so you can home soon. Our love and prayers are with you....Sue and John Z.
Great news! Keep on going!
Thanks Gracie for all your inspirational ideas and for keeping us here in SB in the loop regarding your progress. We are all in this together and learning right along side you about AFM. Looking forward to hearing more of your ideas. Lots of love, Dana, Robert, Luke and Dane xoxo
Go, Gracie, Go! You are unstoppable, Gracie. There's no mountain to high for you to scale, and it's with this strength and perseverance you will make your way back to good health. We are cheering you on every step of the way. Sending you love and support. ❤ Bridget, Cate, and family.
Hi Grace. My name is David Kirkwood, I worked with your Mom some time ago at Human Performance Center in Santa Barbara. I met you and your sister a few times, and was always impressed with your maturity, and with how polite and kind both you and your sister are. Please know that you have friends that you don't even know keeping you and your family in their thoughts and prayers. You are pretty special. Keep doing what you are doing, as you are surrounded by a network of people that love you and are doing their best for you, and you will achieve the goals you have set for yourself. By the way, your name is a very apt description of you. Best regards, David
I am so in awe of your tenacity, Gracie, your courage and your desire to help others. You are making the best of your difficult situation; what an example you are to all of us, young and old alike. I pray every day for a miracle and it seems as if God is answering that prayer. I am so happy you are slowly getting better. Every Wednesday when it is time for your lesson, I miss you, and also on Saturdays at SB Strings. Keep up your great effort and wonderful attitude. Sending you so much love.
You continue to inspire and amaze us with your tenacity, laser beam focus, and unending courage! We are all overwhelmed by the progress you have made in your healing journey and it's wonderful to start getting your updates from you directly!! Love the ideas for raising awareness about AFM. Lots of sunsets and sunrises just waiting to be taken in support of spreading the word. Big hugs to you and your family. Suzanne and Bruce McAdams
Wonderful news !!! We are overjoyed to see your progress. Your spirit is so inspirational and it surely must make all the difference in your recovery. Thank you for letting us know about your journey, we always look for your updates and really appreciate them coming from you! You are in our thoughts and prayers daily. Lexi, Michael, Ben and Dominic Wilson
Wow!!!!! I watched the video of you MOVING YOUR ARM about ten thousand times! Your progress is so so uplifting and your sweet and strong nature is a shining example to me. What a remarkably strong and vivacious girl you are. Everything you do shines with light you carry with you! It means so much to all of us that you are sharing your progress. Sending you hugs hugs hugs! Peggy
Me again Gracie. Want to see a hilarious video about rainbow art? Thought this would give you and Emily laugh! :). Love, Peggy (if the YouTube link doesn't work just search The Rainbow Sponge By Lovely Moon.) https://m.youtube.com/watch?v=V_OVxxIvqVw
Hi Grace, we have never met, My name is Scott Gurba . I went to NAU with your dad. As you know , you meet all kinds of people along your journey of life. It was clear earlier on, Bill was someone you would always want to stay in touch with. I say this because you will continue to meet all types of people as you take your journey. Welcome them into your world and show them how much a simple smile may mean :). Your focus is inspiring and reaches more people than you may realize. Please continue to write in your journal. Scott
Gracie, we love seeing the videos of your progress. Your spirit and tenacity warm my heart and bring a smile to my face. The idea of sunset pictures is a beautiful idea. Love, Amy, Matt, Alegra, and Oliver
I am overjoyed to see you moving your arm and driving your wheelchair! It is truely an answer to prayer to see your progress. I believe that God has great things in store for you! Our family prayers for you everyday and we will keep praying.