May 5, 2020 at 11:00 am #15246Kevin SchaeferKeymaster
Hey everyone! Hope you all are staying safe and healthy.
As Dagmar posted about earlier, we at ALS News Today are doing a series of community member spotlights throughout April. In recognition of ALS awareness month, we want to share stories from people in our community. Check out the first one right here.
This is Diana Belland’s story:
[caption id="attachment_15247" align="alignnone" width="626"] Courtesy of Diana Belland[/caption]
“Hearing the words, “you have ALS,” when you’re barely out of your twenties or well into midlife with a family to raise and a career to maintain is a devastating shock. But for some, like myself, the ALS beast delivers its jolt late in life, crushing cherished dreams for those “golden years.”
In December, 2017, surrounded by my loving family, I celebrated my retirement from a 42 year career as a university music professor. In excellent health, I was confident that my regular habits of running and hiking guaranteed that twenty good years lay ahead of me to continue traveling, learn new piano repertoire, and improve my skills as an amateur Irish fiddle player. I would paint more water colors, ride a bike path in France, do a day hike on the Pacific Crest Trail, visit the Galapagos Islands!
But by early January, 2018, no longer able to ignore the nagging weakness in my right foot and ankle, I made an appointment with a surgeon and began a 14 month journey which included MRIs, EMGs, spinal surgery and carpal tunnel surgery, and led, finally, to the diagnosis of sporadic limb onset ALS on March 15, 2019.
What I wish more people understood about life with ALS is that its causes are still not completely understood, and thus there are still no “cures” on the horizon. We pALS must forge our own individual paths through multiple sources of information and advice about drugs, therapeutic supplements, exercise and nutrition. Our challenge is try, within our limits, to craft a life that includes healthy habits, supportive relationships, daily goals, and overall purpose.
Over the past year, as I’ve struggled to adapt to the loss of my retirement dreams, I’ve been immensely grateful that I could turn to the ALS NewsToday Forum and its wonderful moderators, Dagmar Munn and Amanda Sifford, for invaluable information, advice, and inspiration. Thank you!
Do you have any takeaways from Diana’s story?
May 5, 2020 at 12:02 pm #15253
Diana, your words are so encouraging! “Our challenge is try, within our limits, to craft a life that includes healthy habits, supportive relationships, daily goals, and overall purpose.” …and true!
Thank you for sharing your story. Thank you for adding your voice to the forum – – I value your friendship 🙂
May 5, 2020 at 3:02 pm #15256AnonymousInactive
When you least expect it, it surfaces. I knew a man who ran marathons who developed colon cancer. I myself walked 4 miles twice a week, used an Exercycle at home and was generally physically active. Suddenly, I noticed my feet would not maintain a flat position while walking and I tired easily. I have limb onset with PUMN involvement. Lucky me!
May 5, 2020 at 9:02 pm #15261Dee HagenParticipant
I applaud you for your positive perspective. My husband has a similar story that upended our retirement dreams as well. I think your takeaway of forging your new path and educating yourself is the best way to move forward with this disease. It can be easier said than done in those first few months after diagnosis. My heart goes out to you and your family. Thanks for sharing your story.
May 5, 2020 at 9:42 pm #15263AmandaKeymaster
You are truly inspiring! I’ve learned a lot from you on this forum and I appreciate all of your contributions! You make are community a wonderful, warm and safe place for all of us!
May 6, 2020 at 10:09 am #15268John RussellParticipant
I’m touched by your story Diana. You have had so much taken from you by this awful disease. So many great plans and worse, losing ability to express your talent.
You are one of the most dedicated warriors against what ALS takes I know and I take personal inspiration to persevere from your efforts.
I love the photo you included and also must complement you on your red Drive Euro which is identical to my red Drive Euro?
Thanks again for sharing your story.
May 9, 2020 at 8:26 am #15291Diana BellandParticipant
Thank you so much dear pALS for your kind comments. I am so grateful for this forum and the friendship and support it provides.
August 18, 2020 at 8:16 pm #16156
Sad News to Share with Our Forum Members – – Today, I received the sad news that Diana has passed. She was one of our very first forum members and joined in many discussions; ever ready to offer helpful suggestions and her thoughts. Even though we lived miles apart, over the past year and a half, Diana and I became friends – – emailing each other at least once a week.
On behalf of this forum and its members, I send our prayers and heartfelt sympathies to Diana’s family at their loss. She will not be forgotten.
September 1, 2020 at 4:52 pm #16227
September 14, 2020 at 10:05 pm #16339AmandaKeymaster
Thank you Dagmar. Diana will truly be missed. Her family is my thoughts and prayers.
September 15, 2020 at 3:51 pm #16343Marianne OpillaParticipant
I am so saddened by this news. A life taken too soon by this horrific disease. She is now healthy and at peace.
Hiking and playing music in the beyond.
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