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What do you celebrate?
December 2, 2022, is a day I will never forget, and I am going to celebrate! This is the day I was diagnosed with ALS. The illness had been looming over my head for years, and although I knew it was coming, I was still in shock to learn it was official.
Now, almost a year later, I am planning a trip to celebrate the anniversary with my sister. I’m celebrating all the good things ALS has brought into my life. I have friends that come and visit several times a year, I’ve rekindled old faded friendships, my mom and I are closer and spend more time together and my sister and I take more trips together despite us living in different parts of the county.
I’m much slower today than a year ago. However, I can still walk, talk, work, volunteer for research, and take care of my mom and pets. There were about 3 months that I was losing ground rapidly, but since July my illness has seemed to slow down. I’m going to celebrate all the “I cans” possible!! I know that time is precious, and I sure hope I can keep this attitude as long and often as possible. I know that it is harder with each loss, but I’m going to do my best!
What are you going to celebrate as we approach 2024? Has ALS brought anything positive into your life? (I know we would all opt out of ALS if possible!!)
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5 Replies
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I’m not a fan of celebrating the “date of diagnosis” – – since to me, it is an arbitrary date (most likely selected by the doctor’s receptionist). I know I had symptoms of ALS months before receiving the official diagnosis from my doctor, so the date of my appointment holds no significance (except it’s important for my prescription of Riluzole, Social Security, and my health insurance provider. haha).
That said, I do celebrate the New Year and having one more year of successfully surviving ALS behind me. I appreciate being able to find new ways to express myself (through writing) and having an appreciation for the challenges of the Rare disease community, that I’m now a member of. I look forward to having more positive experiences and don’t dwell on losses.
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https://alsandwellness.blogspot.com/2022/03/date-of-diagnosis-is-this-one-of-your.html
alsandwellness.blogspot.com
Date of Diagnosis - - Is This One of Your ALS-related Mental Potholes?
ALS patient Dagmar Munn shares how she tries to keep a positive mindset while managing mental potholes caused by living with ALS.
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December 14, 2023 marks six years since I was diagnosed. Like you said, I know I had ALS long before I was diagnosed. I do like knowing that I have surpassed the prediction of 2-5 years to live with ALS. I don’t plan to celebrate, but I am happy.
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Hi Cheryl,
How are you 6 years in? Do you have any words of wisdom to share? Is there anything you do that you think is making a difference?
Amanda
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I have been taking Riluzole and Radicava since my diagnosis. I am confined to my power chair. I have a little use of my arms and hands and I can stand with assistance. I have a feeding tube. I can drink thickened liquids. My speech is garbled, but still intelligeable. I am blessed.
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