Dagmar
Forum Replies Created
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I agree with you Nelly. It’s important that we ALS patients consume a healthy, well-balanced diet.
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One of the ways I cope is to ask myself – – what changed, who or what can help me, is this ALS or something else not related to ALS… ?
I also view things with humor… lots of humor.
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Hi eric, I don’t think gaining weight would be related to your rate of progression. Weight is affected by medications, intake of food, your inactivity, etc. This is something that your medical team would be able to tell you.
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Actually, I don’t mind busy events with lots of people, but I do need a few days afterwards to recover – – low activity, solitude, rest, etc.
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Here are some great tips from ALS patient Amanda Tam:
https://alsnewstoday.com/video/amanda-als-travel-tips-sturdy-wheels-airline-calls-time-enjoy/?utm_source=ALS&utm_campaign=e11b237f30-Email_ENL_US_ALS&utm_medium=email&utm_term=0_0593028b75-e11b237f30-72271217 -
My early symptoms were muscle cramping in my thighs, so I tried massage therapy and stretching movements. Also, when my feet became weak, I looked for better shoes, arch supports, and foot massage. Of course, nothing made the symptoms go away. When I found out I had ALS, I knew the problem wasn’t my feet or leg muscles – – it was my body’s internal systems – – the buildup of oxidation that was killing off my motor neurons. Riluzole and lifestyle modifications are helping to keep the oxidation lower.
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In their recent MDA magazine, they recommend train travel over flying – – trains are more accommodating, they say. Has anyone had experiences with either that support trains over planes?
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Since we don’t have family living nearby, my husband is my full-time caregiver. When he needs to be away for any length of time, we utilize a local home health service called Bayada. Their home health aides have had special training in caring for patients with ALS.
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DHOP, I hope you are on the right track here and find success. So often, mouse models don’t translate well to human trials.
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Renee, when do you think you will stop driving altogether? Do you have any alternatives for transportation?
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Any tips you can share re: living with a feeding tube prior to needing to use it?
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K-Allen, I am sorry to learn of your problems getting diagnosed. As you are on hospice care, I assume you opted to not take any medications… ? Are you doing anything to help alleviate or manage your symptoms? (ie., exercise, modifying your diet, mental stress reduction techniques, etc.)
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Prednisone has been known to lead to weight gain.
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Amanda, now that your breathing has improved from your medication, do you still use your feeding tube? Will you keep it – – has it given you any problems over time?
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Timmy, I’m sorry you’ve had to deal with a rotating list of neurologists. Hope you’ve found one now that you like.
Question: How does Rilutek being on the market for so many years equate to it being less effective? Wouldn’t its longevity mean that it works well for many patients?
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Richard and Sandra, I know the frustration in not being able to swim or use traditional fitness equipment anymore. What I do now is build short bouts of exercise into and throughout my day. I had to give up aerobic type exercising – – and now make sure I do breathwork every day. Perhaps this blog post I wrote will give you some helpful ideas.
https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.htmlalsandwellness.blogspot.com
My Tricks for Adding Movement to My Day
ALS patient Dagmar Munn shares how she adds movements throughout her day to help her live with ALS.
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oh my Eric, you really went through “the wringer” before finally being diagnosed. I hope your symptoms have slowed down and are manageable. Thank you for sharing your experiences with us.
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Thank you for sharing your experiences, John. Please keep us updated if you discover any tips or have any (hopefully not!) … changes.
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Those work great, and like you, I’ve also had success using them when traveling. Thanks for sharing the suggestion with us.
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Oh my! What an awful experience.
What do you do now for nutrition?
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I agree with John, that your comments Diane, are spot on! Thank you for putting words to what many of us feel.
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Johnny5, I have heard about Lion’s Mane Mushroom (LMM) supplements for the past 15 years that I have had ALS, and nowhere have I read that it has any effect on ALS. Even ALS Untangled looked at it and couldn’t give a definitive answer. “Needs more study” is another way of saying, it doesn’t work.
Maybe it improves IQ (???) and stimulates nerve growth, but those are not related to the condition of ALS. Something that addresses why the motor neurons are dying off does. Sorry, but vitamins and supplements are only good for the people who sell them.
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Thank you for the head’s up CCrone. Accessibility is so important.
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May I ask, do your paid caregivers cook meals in addition to other household duties, or do they only attend to your husband?
