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Doug Frazier replied to the topic Favorite methods for holding head up in the forum Living With ALS 2 weeks, 4 days ago
Fred:
I agree about the metal tubes. The only way you could sit down is if you had custom foam cushion made with a slot cut in it but I don’t know if that would work either.
I ordered one because I can still walk and I want to try and continue that until it becomes unsafe. My right arm is going so some time this year my lack of arms will make…[Read more]
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Doug Frazier replied to the topic Favorite methods for holding head up in the forum Living With ALS 3 weeks, 5 days ago
Luke: Great reply. Thanks.
If I understand your description correctly, it sounds very similar to the device at stopheaddrop.com. Click on products.
The inventor is an ALS patient.
Would you look at that and let me know if it sounds similar?Someone suggested this to me but I have not tried it yet. I showed it to my OT this past week at…[Read more]
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Doug Frazier posted a new activity comment 1 month, 1 week ago
Just curious, what services do you find the most helpful?
Thanks for the reply.
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Doug Frazier started the topic Is Synapticure worth doing? in the forum Living With ALS 1 month, 1 week ago
A friend mentioned the Synapticure organization to me.
It looks impressive online.
Do any of you have experience with it and what do you think?
It seems strange that my clinic did not mention them to me so I was just curious.
Thanks
Doug
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Doug Frazier started the topic Favorite methods for holding head up in the forum Living With ALS 1 month, 1 week ago
I recently lost the ability to hold my head up.
My clinic suggested two neck braces. I bought one but it causes jaw pain if I don’t get it on perfectly.
I see some PALS with a black band on their forehead. Is that what this is for?
I’m not in a chair just yet.
I would appreciate any ideas for the best ways you’ve found to do this.
Thanks
Doug
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Doug Frazier replied to the topic Did you plan ahead for long-term care, or were you in denial? in the forum Living With ALS 4 months, 2 weeks ago
I don’t claim any great planning. More like dumb luck. My company offered it when I was 35 years old. It was so cheap I simply said why not. I don’t remember even giving it much thought. Now, 35 years later it will pay off. I haven’t used it yet but it won’t be long.
In the last decade, they offered chances to increase coverage for an increas…[Read more]
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Doug Frazier replied to the topic CLENBUTEROL in the forum Research Topics 5 months, 2 weeks ago
Robert:
My doctor confirmed that you (and the Mayo site) were right and that my bottle label was wrong about not taking Riluzole with food. So, thanks for taking the time to reply initially.
The site also said not to chew the tablet which I was doing because of difficulty swallowing. My doctor then prescribed the liquid form. It is much more…[Read more]
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Doug Frazier replied to the topic CLENBUTEROL in the forum Research Topics 6 months ago
For Riluzole, my instructions are only twice per day, with no mention of food timing but I checked on Mayo’s site and you are correct. I will check with my doctor and let you know if the directions I received were on purpose or not and let you know.
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 7 months, 3 weeks ago
George:
Thanks for the advice. I will pass the direct approach tip to my wife. Luckily, she is not the shy type and will have no trouble with this.
I agree with your vacs approach as well. I had to do that with my own brother. He still wouldn’t get vaxed so I met him on the back porch, separated by a long distance, wearing masks but I think we…[Read more]
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
To everyone that replied:
Thanks so much for taking the time to reply. Even though I have read about and know what is coming, the aspect of being a burden on others has been haunting me. Hearing all of your details from real life have really made a difference. I think it moves it from theoretical future stuff category to concrete details. The…[Read more]
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Bill:
That is just what I needed. I was fearing sitting at the table doing nothing and maybe making the whole thing awkward. Or group meals are usually so fun that I didn’t want to bring things down. Hearing your comments reinforce that I just need to chill out and go and they will understand.
I will definitely be asking the doctors about the…[Read more]
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Elizabeth:
Thanks for the thoughts. Very helpful.
Doug
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Carolyn:
Thanks for the additional thoughts. These kinds of details were just what I was looking for.
Thank you
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Bill:
1. At a larger family dinner (family, their spouses, etc.) do you sit at the table with the others and not eat? Does the conversation flow as usual? I guess if I tell them not to feel like they need to draw me into the conversation they would, of course, respect that. With me I think there is this subconscious desire to not be the reason…[Read more]
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Carolyn:
Establishing practical time limits and combining the visits on days with other commitments are great ideas. I need to realize they will understand and just relax.
Thanks
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Doug Frazier replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months ago
Maggie:
I think what bothers me subconsciously is the thought of altering the usual flow of a group dinner because I can’t keep pace for whatever reason but you are right, my friends / family will completely understand and want to do what’s best for me.
I do need to keep reminding myself that my friends will fully understand the situation no…[Read more]
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Doug Frazier started the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 8 months, 2 weeks ago
My ALS progress: I have lost use of my left arm. I can still talk but sound like I am drunk :). Eating is getting difficult. I have to place food on the right side and if it gets out of place, I have to tilt my head to move the food around. When swallowing doesn’t work there can be much coughing/gagging, etc. Right arm and legs are ok.
Question:…[Read more]
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Doug Frazier replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
Dagmar:
I appreciate the details. I am a newcomer to ALS. It was nice to see your normal diet having such good results for you.
Doug
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Doug Frazier replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
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Doug Frazier replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
Duane:
I was having stomach issues with Riluzole. What finally eliminated all the stomach issues was two things:
1. Eating half my meal, taking the Riluzole, then eating the other half of the meal. It also seemed that some amount of grains in the meal was important. For example, if I ate only vegetables, fruit and nuts but no grains, I could…[Read more]
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They have a counselor who will do everything for you set up things. A neurologist who can order things and go over your health. They are fast and helpful. I mean fast!! Some of them have personal connections or have had with ALS!!!