Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)
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Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)
My life with Duchenne muscular dystrophy:
The Good, the bad, and the ugly
Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)
Name: Josh Winheld
Location: Philadelphia, PA winheldsworld@gmail.com
Location: Philadelphia, PA winheldsworld@gmail.com
About Me: Diagnosed with Duchenne muscular dystrophy (DMD) when I was 4 1/2 years old, I have been in a motorized wheelchair since age 10. Now 31, I have been ventilator-dependent for seven years. Despite my disease, I have strived to live as normally as possible. I was mainstreamed in public schools, graduated college with a journalism degree, and am currently pursuing a master's degree in urban studies.
Winheld's World chronicles my daily experiences in living with DMD and with a disability in general. I also use this blog to promote my autobiography, Worth the Ride: My Journey with Duchenne Muscular Dystrophy (iUniverse, 2009).
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Blog Archive
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2009
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December
(8)
- This December, we held our annual Cousins Dinner i...
- JOSH WINHELD, z”lFamily and Friends of Josh:On Fri...
- When I told my Mother Josh had passed away, part o...
- I remember when Josh was a little boy we used to p...
- Josh truly was an unbelievable person. He accompl...
- As you may or may not know, well over 400 people a...
- Josh Winheld's funeral will be held this Tuesday, ...
- Today, my courageous and inspiring brother, writer...
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December
(8)
15 comments:
Hi I follow Duchenne Muscular Dystrophy on Twitter Just read Sue's post and I hadn't realized Josh had died until I came to his blog..I had wanted to "follow" him. To all that Josh affected with his life I salute you! As I write I'm listening to a radio show I did with Pat Furlong
http://www.livingtheautismmaze.com/radiator_061709.mp3 and this is very poignant. I am so sorry and will think of you all. Best wishes, ANNE in VT
In memory: Josh Winheld
Saywatanayo (Shawshank Redemption)
To my friend Josh,
I’m sure heaven is a brighter place today, but our world feels pretty empty. We did not have time to say goodbye. Or time to tell you all of the things that come to mind today or how thankful we were to know you, to have you in our lives, to learn from you, to see you smile.
You had learned all of the lessons life had to teach. You shared your knowledge, spread your joy and extended your hand to all of us. You made our lives better. You made us better.
For the last two years, you participated in the expert panel during PPMD’s annual conference. In your blog, you wrote –“ the main theme of our talk was that life does not end with a wheelchair. We have all been able to accomplish much in our lives, despite being in chairs”. You were living proof that a wheelchair should not be considered an obstacle to success.
Later you blogged “I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." You inspired us to live today and everyday.
We leaned on you for your insight, for your courage, for your wisdom and for your humor. Just after Scott Sands’ received his pacemaker/defibrillator implant, you wrote “may your heartbeats be regular and your shocks be few”. Josh, you had first hand experience with this device, but your message hits home.
Like you Josh, I love the movie “The Shawshank Redemption”. In the film, Andy Dufresne and Ellis “Red” Redding were prisoners at Shawshank Prison. Andy and Red met while serving time for 1st degree murder. While in prison Andy believed his life would not end in Shawshank prison. He invited Red to be his business partner after serving his time. Red had little hope of freedom. Andy escaped from Shawshank. Sometime later, Red was granted parole.
You were working on your thesis at the time and wrote: “Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. After getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red, when he found the note Andy left for him) if you had come this far, you could go just a little bit further.
Andy’s letter:
Dear Red, If you are reading this, you have gotten out and if I had come this far, maybe you are willing to come just a little bit further. You remember the name of the town don’t you? (Saywatanayo)
I could use a good man to help me get my project on wheels. I’ll keep an eye out for you and the chessboard ready. Remember Red. Hope is a good thing, maybe the best things and no good thing ever dies. I will be hoping that this letter finds you and finds you well. Your friend, Andy
And on November 9, you added the finishing touches to your masters thesis and submitted. You were tired and wrote “if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time! And in your fatigue, you were able to go further, always take the next step forward.
Josh, I like the words of Leonard Cohen. We are all
“passing through, passing through,
sometimes happy, sometimes blue.
(but very) Glad that we ran into you”
Josh, Hope IS a good thing and no good thing ever dies. If we could photograph HOPE, it would be your smiling face. I am hoping this note reaches you and finds you well. You are loved.
Your friend, Pat
Josh,
Pats words are so very true. Though I didn't know you well, I knew you and considered you a friend. You and my son are brothers in this DMD world..the world I so hate. Thank you for showing us how to embrace this world and make it the best one we can have!
Thank you for embracing hope and courage and making us laugh at the ugliness of Duchenne. Thank you for sharing your insights to those of us who must walk this road.
Mr. and Mrs. Winheld, thank you for raising such an awesome son and giving me the courage to help mine learn that a world with Duchenne does not mean defeat, but rather a world with different, golden opportunities for him to take!
Conference next summer will be hard without you Josh! We will miss you, but NEVER forget the lessons you have shared and the friendship you gave.
I feel like I should say "rest in peace", but really, I hope and pray that you are in Heaven running and screaming (probably for the Phillies!!) and doing everything that your wheelchair would not allow you to do on earth!
Continue the Ride, Josh and enjoy it! You will be terribly missed on earth by so many of us who were priviledged to know you.
Lori Ware
www.caringbridge.org/visit/seph
Josh was a great person to know and learn from. He was always willing to open up and share his experiences with a younger patient lettign them know the road is not easy but "Worth The Ride." More importantly, he thrived on teaching new physicians about DMD which gives us all hope that if there can't be a cure let there alt least be dignity and compassion. God Bless.
C. Debrest, MSS
Children's Hospital of Philadelphia
Josh, I'm so sorry, so so sorry that I can't be there with everyone celebrating your life for your final farewell. I know that you know you were very special to me, you were someone that I could talk to about anything, anything at all and that made you one of the best friends I have ever had.
I have to tell you that it is as bad as you hoped it wouldn't be. I cant lie to you - I never could, but Im glad that it hurts as much as it does to not have you in my life! If it didnt hurt like this then I would question our friendship and I dont think either of us would ever have done that for a minute. You helped me through so much when my Tim died and I lost my soul mate to the same horrible disability that has now taken you too.
You have left a huge hole in my heart that will never be filled! That makes two massive holes now, both made by two very special men in my life and I am grateful for both of them. To have had you in my life was a great honour and you know that I will have a special love for you until the day I die.
You were the most courageous man I have ever had the pleasure of meeting and I will never forget you. Never before have I met anyone who underestimated his achievements and just wanted to do so much! The countless arguments (well, not arguments, more like discussions where I told you off a lot) we had where you were saying you hadn't achieved much in your life and you still had so much that you wanted to do. I know that Im not the only one who told you you were amazing, you just didnt seem to take much notice of any of us when we told you what a great man you were!
I was pleased that we got to share the moments that we did and was happy that the memories of those moments helped you when you were feeling down. Those memories will help me through my low points and I know that you will be there holding my hand whenever I need you, just as I was for you on those difficult nights that you couldn't sleep x
I will miss you forever Josh, sleep well. Until we meet again x Emma
I am sad to hear the news. Josh has been such a good friend over the years, I am certainly going to miss him. But he will always be with us in spirit. I still have his Bar Mitzvah picture up over my desk, looking thoughtful and happy, and reminding me of the courage of all those who face muscular dystrophy, and keeping us focused on reducing the burden of this disease.
I am sad to hear the news. Josh has been such a good friend over the years, I am certainly going to miss him. But he will always be with us in spirit. I still have his Bar Mitzvah picture up over my desk, looking thoughtful and happy, and reminding me of the courage of all those who face muscular dystrophy, and keeping us focused on reducing the burden of this disease.
I never knew Josh, but after seeing the obituary, then reading many of his articulate postings to this blog, I wish I had. Now I need to read his book, then recommend it to parents and kids I encounter in my practice...I think his father Mike was our softball coach at Camp Harlam (Tzedek back then) so I know where he got his love for sports. Gonna click the link to buy a copy of the book, then get a cheesesteak, maybe wander over to Lee's on Old York, in his memory. Condolences to his family.
Harlam 67-72
To Josh's family-I am very sorry for your great loss. Josh was one who shared his struggles and wrote candidly about living his life. He was a bright beacon to many people, including parents of dmd kids. Although my son is 22, I learned so much from people like Josh, because he had a wisdom that takes the rest of us years to acquire. He did not put limits on himself. Sometimes as a parent, we put limitations on our kids, for a number of hidden reasons. Josh taught me that my son can be whoever he wants to be because the sky is the limit.Josh taught me that there is a life worth experiencing no matter what obstacles one may face.Thank you Josh for all you meant to so many. You will be greatly missed. I wish your family peace and strength.Regards-Suzan Norton, Standish, ME
I am a social worker and I contacted Josh a few months ago for advice on helping a 14 year old boy with Muscular Dystrophy. He gave me so many great suggestions and he contacted this boy's family. What an amazing and generous man he was. I regret that I did not have the chance to get to know him sooner.
My thought are with his family and many friends.
Anne
Josh-
My wonderful friend. I feel like I was close to you my whole life, though we only met in 2007. We shared many long conversations about sports, women, cheese steak, chowda, travel, and our disease. I am having a difficult time realizing that I will not speak with you again on the phone, or share a laugh at a baseball game with you, while Frank is saying something witty (or not..haha). I know you are with me in spirit, and when I shared the news of your passing with my students they were deeply saddened. I already miss you, and I want you to know that I will carry the torch for MD treatment, and research as long as I possibly can. Someday, I will walk next to you in heaven. Please forgive that I will be wearing a RedSox cap, and not a Phillies one. haha. I couldn't resist.
I am a better person for knowing you, and you continue to comfort me in my memories of our great friendship. Until we meet again my friend.
Patrick
I am so sorry for your loss! What an amazing young man. He is a hero in my eyes.
My 4 1/2 yr old has DMD. I look forward to the day when we tell him about Josh and his amazing spirit!
I am sorry my friend. I was very honored to know you.
I miss you a lot. I admired your courage to live a full and rich life
Ami Profeta
Linda and micheal you raised a son that everyone loved.Shelby and i live in florida and wish we could be with you.remembering the friendship that started in nursery school and lasted a lifetime.our prayers and thoughts are with u.I think that shelby was his first crush they had spoken often.We will both miss him
I've been following Josh's writings for a long time and am so sad to hear of his death. He was a man of great spirit and he will be missed. My thoughts are with you.
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