deb-winters
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I have been living with a LS for 2 1/2 years. My dominant hand is unable to work at all, my left hand is getting weaker. This to say, eating out and eating in front of others can be a challenge. In addition, I use a cane / crutch to walk. I wear a name badge that says Deb Winters, living with ALS. While I don’t enjoy the deficits I’m learning to live with, they are not of my choosing or design. I don’t exaggerate them in any way ever! For instance, I don’t order soup in public. However, I proudly and gladly answer questions of other adults, and particularly of children who I catch looking. I know their adults are listening as well. Education and awareness of ALS and the challenges it provides is critically important in our culture. Take a moment – answer questions – point people to a resource. Let them know how they can help and make a difference.
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As a type A personality, getting realistic about my energy levels has taken me a bit. One thing I knew, if I had no purpose, I would not have quality of life. Also, knowing myself, no one around me would enjoy their lives either! 😉 A retired pastor, trusting my Lord and Savior, reading my Bible and praying is a long time habit. I delight in the extravagant time I have now. But purpose …. I found in advocacy. We founded a nonprofit organization to educate and advocate for those affected by ALS. https://www.debbashope.org is the website that explains the mission and events for Debba’s Hope 4 Tomorrow. Advocacy = writing, speaking, teaching allows me to have purpose, take care of my health, and live with abundance every day.
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While not being super-strict, we have moved toward a Mediterranean style of eating. Eating more wild caught fish, lots of fresh vegetables, berries and melons. Pasta has changed to chickpea based, bread and potatoes are minimal. Walnuts, olives, avocado.
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<div>Thirst, let me say what an incredible list is already posted.</div><div>
</div><div>I have learned to be kind to myself. I have learned to ask for help. I have learned to do what is most important to me first, and each day only do what I can.</div><div>
</div><div>But one of the biggest helps I’ve learned is how to do talk to text, or whatever program I’m using – it’s using my speech, which has not changed, has been incredibly effective. Having been born right hand, dominant, my left hand is not nearly as effective, but my right hand and arm are of no use. This simple trick has made a huge difference in my day-to-day work.</div> -
As a former organ donor requestor, when I was diagnosed with ALS I checked with my former clinical team. The answer was -no- since ALS is a neurological disorder of unknown cause, Â we no longer qualify as organ donors. Of course. There is always the caveat of each case is determined medically at the time of death. Another really good reason to continue research and find the answers!