Dagmar
Forum Replies Created
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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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For me, it’s been a process of identifying energy-wasting activities, being okay with asking for help or letting others take over, and doing things within my abilities and that have value.
– using an electric toothbrush instead of a manual one. Using a walker instead of struggling to keep my balance.
– giving up cooking and laundry duties. But do help with planning meals.
– giving up teaching in-person workshops and classes … and instead, sharing my knowledge through writing.
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Prior to being diagnosed, I was a healthy lacto-ovo-vegetarian. But my neurologist convinced me to increase my protein, which I did – – and added animal protein to my daily meals. I believe that change helped my body maintain strength … and, it was a lot easier for my husband-caregiver. Four years into ALS, I began to have trouble swallowing thin liquids. So, I’ve been adding a thickening powder (Thick-it) to all my beverages. No other changes to my diet since then.
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It’s been over a decade since I travelled cross-country with my ALS needs. At that time, hotel/motel accessible rooms were available but inconsistent in true accessibility. Especially the bathrooms – – towel bars standing in for grab bars, walk in showers with poorly placed grab bars, and flimsy shower seats placed faaaar away from the faucet handles. I wonder if current traveling pALS have found things have improved at all?
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Question for slow progressors: Do you still attend your ALS Clinic? If so, how often? If you’re not going anymore, why?
I still go to my clinics, although it is now every 6-months. I still go because I need to have my doctor renew my prescription for riluzole.
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Here in the U.S., I had the typical MRIs, EMG, labs, and in-person assessment by a neurologist. I’m curious if doctors in other countries have similar or different tests for ALS.
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I am excited to learn about this year’s unique events for ALS awareness month – – plus those happening all summer long.
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My only medication is Riluzole (15 yrs.), I do daily “physical therapy” at home on my own – – doing my own stretching/strengthening routines several times a day. I tried massage during my 1st and 2nd year of ALS, but found I had too much trouble getting on and off the table, so I quit going. I don’t take vitamins or supplements – just try to eat a balanced, nutritious diet.
I am curious Amanda, why mention high protein, low carb diet? Is it the latest fad diet for pALS? I last read that carbohydrates are good for helping slow progression.
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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?
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Thank you!
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Hello Styxie, I was also worried about what I should (and should not) be eating when I was first diagnosed. Over the past 15 years, I’ve observed that there is no special diet to follow. Just eat healthy meals several times a day. No special vitamins or supplements – – try to get these nutrients directly from your food. Now is not the time to put your body under stress by trying a wacky diet. Don’t let the spammers and pseudo-experts tell you that you can cure ALS through food, supplements, or other ingestibles. Just eat healthy, nutritious food.
I’m sure the dietitian at your ALS clinic will be able to provide you with further guidance. Best wishes to you and welcome again to the forum.
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Jane, I think we pALS have to adapt to our muscles having to work overtime (due to less motor nueons firing and muscle atrophy). We are accustomed to being able to rally on busy days and only need a good night’s sleep to recover. I’ve learned to anticipate needing a few days of recovery time – – and make sure I take them. Perhaps this column I wrote about what I do be helpful to other forum members:
https://alsnewstoday.com/columns/als-post-event-recovery-tips/ -
K-Allen, yes, using a walker is a lifestyle change that you’ll need to adapt to … but after numerous falls, it is the best course. Best to avoid having to lay in a hospital bed with a broken bone, than the freedom to enjoy friends and family a little longer – – even it means pushing a walker.
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Fred1, I believe what you are experiencing is common to ALS in general. Even slow progressors get occasional twitching and cramping. Are you doing daily range of motion movements with your arms, hands, and legs? Those have helped me avoid muscle cramping.
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I have noticed the same up-down/good day not so good day cycles. On the days I feel almost-normal-again, its had not to overdo. On the off-days, I have to mentally overcome feeling that I’m losing control. Reading your account helps me know I’m not the only one who experiences this.
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May I ask you to explain why “ketones” are important for you? I’m not familiar with why they are important for those with ALS.
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sarahw – – may I ask, how long would you guess it took from you first noticing symptoms until you received a diagnosis?
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Sounds like you are managing your pain and symptoms well. May I ask, do you rely on caregivers or are you doing this alone? Does the up/down of Chicago weather affect you and are you able to get to places easily?