A letter to my newly diagnosed self

Dear Dagmar,

I know the news is still fresh. There are so many things I want to tell you, but I’ll keep this letter focused. That’s mainly because I know being contacted by your future self can be startling enough, but added to that, being told you have ALS can be so overwhelming.

Since it’s 2010 and you’re only starting on your ALS journey, I want to reach back through time to send you encouragement, reminders, and some good news about how your future will unfold while living with this condition.

Please take a deep breath and trust the wisdom you already possess. The next few years will involve hard decisions, but I am here in 2025 to tell you that you’ll handle them with grace, foresight, and resilience you didn’t know you had.

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Bathroom safety

I know you’re spending time weighing the pros and cons of a big home renovation project. It’s the bathroom remodel, and I heartily affirm that it’s a wise decision. Stop second-guessing the cost and effort. This isn’t just a remodeling project; it’s an investment in your independence and future comfort.

In 2025, I’m still using the grab bars, bidet toilet, roll-in shower, and sturdy shower chair, and I anticipate continuing to do so for many years to come. These adaptations will eliminate daily struggles and prevent unnecessary falls. You are showing incredible insight by tackling this now, before the changes become more pronounced and the project more difficult. You are making a smart, wise, and necessary decision.

Keep moving

You’re also grappling with the issue of continuing to exercise while living with ALS. I know it’s a controversial topic in 2010, with some outdated medical advice suggesting you should avoid exertion. However, I can report that over the next decade, research will confirm that movement and consistency with exercise are undeniably beneficial.

So follow your instincts and lean into your knowledge of fitness and wellness. Go ahead and exercise every day. Focus on range of motion, gentle strength, and balance. Fifteen years later, I credit your determination and consistency for the fact that I’m still able to walk across the house independently with the help of a rollator. Your dedication now will pay off with years of preserved function. So you go, girl!

Support and resilience

Know that your family and friends will be your biggest supporters. Trust them, confide in them, and allow them to help. And give extra love and hugs to your husband, who will step up to become your primary caregiver. Accept his help gracefully, as it allows him to share the burden and feel like an active part of your team.

I’ll finish by sharing some interesting news in hopes that you’ll stop wasting precious time worrying about the what-ifs. In the ALS game of life, even though the game board rotated and left you with an unfair new situation, know that during the shifting, you were dealt a special card with the words “slow progression” on the back. And that, my dear, should fill you with hope.

Most importantly, never doubt yourself, your body, or your mental strength for a second. You will learn to adapt and cope with whatever this disease throws your way. And you will learn how to live well while living with ALS.

Love,

Your future self

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.