Dagmar
Forum Replies Created
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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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Adapting seems to be my middle name! (haha) Seriously, the best thing we did during my first year, was to have our bathroom (shower, toilet,etc) made to be accessible. Then we bought a handicap accessible van with a ramp for my mobility scooter. I have made lots of little adaptations to my daily habits through the years. (I write about them here: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html). I look forward to learning from our forum members about the adaptations they have made.
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Lately I’ve been caught up watching the videos from https://www.youtube.com/@theanatomylab
These are not for the faint of heart… but do present the human body in a fun, factual way. I have learned a lot about muscle groups, digestion, energy needs, and more.
youtube.com
The Institute of Human Anatomy is a private human cadaver laboratory that educates health, fitness, and medical professionals on human anatomy and physiology using human cadavers. Our mission is to teach as many people on the planet as possible about … Continue reading
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I take Riluzole and have been for the past 15 years. During that time I’ve seen the cost fluctuate – – in 2010 and for a few years it was $300.00 for a 30-day supply. Five years later it was $149.00. Then it dropped to $49.00. Now, I am paying only $20.00 for a 30-day supply. What gives?
I suspect the drug company and the pharmacies for high costs. Now, I am using ExpressScripts, a low-price mail-order pharmacy. Has anyone else experienced something similar?
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<div>I live in Southern Arizona (although I grew up in Iowa). I was diagnosed in 2010, with symptoms that showed up 6 months prior to my diagnosis. My initial symptoms were weak feet and legs. Four yrs. later I began having swallowing issues. I continue to walk with a rollator and can eat solid food but have to thicken my beverages with a powder. My only medication for the past 15 yrs. is Riluzole and I don’t take any vitamins or supplements.
I enjoy doing my gentle exercise routines (they help my muscles relax), I knit every day and still crochet and do simple wire crafts. I like creating graphics for my blog via Canva. And I love a restaurant dinner. My mottos are: one thing at a time … and … we can do this. My favorite place is Bali (from a vacation many years ago!).</div>
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I do. I’ve had acquaintances with ALS who’ve passed on from quickly progressing symptoms. Whenever I interact with their surviving family members, I feel guilty I’m still alive and their loved one isn’t.
I try to support the ALS community through my blog and Living Well columns. Hopefully, I can motivate others to take advantage of the latest research showing symptoms are slower from proper medication, good nutrition, good sleep, gentle exercise, and an optimistic mindset.
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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?
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That’s quite a history with ALS, I’m impressed. And that you are still mowing those acres of lawn. Are you still involved with dogs/AKC? How did that begin?
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Are you able to take pain medication for your hips?
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May I ask, what do you do for the other 2 days? Does a family member come to help you?
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I didn’t know Sketchers had a shoe with a removable insole. That’s helpful information.
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good suggestions.
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Nisha, I would follow the advice of your PT and doctor. If your left foot can still support you while you’re walking, maybe not restricting its movement with an AFO is good. Insurance helps pay if your doctor prescribed it, not if it was your decision.
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Welcome Andrew! Are you still doing some exercise? As for swallowing issues, this might give you some helpful ideas: https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html
For me, good posture when eating/drinking + taking my time were of help.
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Welcome Jim! Are you still able to speak/converse?
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Bravo Sandy for your percerverence! If you need any ideas for home exercise here are a few:
https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html
https://alsandwellness.blogspot.com/2015/05/keep-moving.html
alsandwellness.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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Jane, welcome! what part of Iowa were you from? Me, Cedar Rapids. I’m glad I left the snow and cold temps behind. I like you depend on my husband for the household chores and cooking. I hope your husband is a better chef than mine – – he always says “if it doesn’t go between 2 slices of bread or in the microwave, we don’t eat” (haha)
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Lorraine, welcome! I also use a rollator to walk around my home and rely on a mobility scooter when out and about. Does your community provide 3 meals a day or do you have to manage a meal on your own?
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diane-pascot, thank you for your kudos and… welcome to this forum. Being diagnosed during the pandemic I’m sure was daunting. I like your mottos! Dagmar
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Yes, I agree with you Jane – – I especially feel empathy for those diagnosed at a younger age.
