Tagged: ALS treatments, living with ALS, newly diagnosed, Support
- This topic has 13 replies, 10 voices, and was last updated 1 month, 1 week ago by Jerry Fabrizio.
October 11, 2022 at 1:01 am #22800
As a newly diagnosed ALS patient, what are the top three questions you have right now? What is on your mind and would like to have answers to?
October 11, 2022 at 8:08 pm #22862Eric JensenParticipant
What’s next? ????. I’ve had a myriad of possible disease/conditions. Many of them are, “life adaptable,” but ALS has been the king of them.
My wife and I thought there should be a database with, “how to go about opting for a peg tube or BiPap,” as examples.
A list of support groups, locally, for pALS and caregivers.
October 13, 2022 at 3:08 pm #22875john hamiltonParticipant
PEG tubes…good point! I’m deliberating about getting one, but hear a number of caveats, like, Oh, you’ll have to go back to the hospital often to get the tube unclogged; or, Gee, if you wait too long you won’t be qualified to get it; or, You need a special doc…can’t just go to the ER and expect to get a good procedure—that’s the worst option, they say! Oh, and, You’ll probably still lose weight, even if you get a PEG.
So I wait.
October 13, 2022 at 5:40 pm #22881
Eric and John, This website (Your ALS Guide) has excellent and helpful information for newly diagnosed ALS patients: https://www.youralsguide.com/newly-diagnosed.html
And this page covers how to make the medical decisions as to feeding tubes, etc. : https://www.youralsguide.com/als-medical-decisions-newly.html
October 11, 2022 at 8:08 pm #22864
I guess what I most want to know, no one can answer. How much time do I have?
Do you let people know what’s going on? How? Why I speak like I’ve been drinking, why I move slowly. Or is it nobody’s business.
October 11, 2022 at 11:05 pm #22870Len JaxParticipant
You are right, no one can tell you how much time you have left. The thing to remember is that no one does, even the healthiest people. I always try to live like today is the best day I will have. Sometimes I fail, but my positive attitude makes life more enjoyable than looking ahead in fear. That is a waste of the time I have left.
When I was diagnosed, I emailed most of the people in my address book. I explained what I went through from the beginning so people would understand. That is a personal choice you have to make. I have found it was good in my case – it is a way to educate people, and most individuals appreciated the honesty. It is also a way of building support for your journey with ALS. Some people did not respond; it was out of their comfort zone, which is just human nature and perfectly OK.
I have continued to update them on my condition and what I am learning along the way. The response has been very positive.
October 13, 2022 at 8:12 pm #22885Lisa BrownParticipant
I feel and live your frustration. I monitor my own decline and have been pretty good at diagnosing timelines – from walking sticks to power chair. I speak drunkardly when tired. I choke occasionally. My hands are disappearing. I feel I have a couple more years, hoping for 10 more as the research/trials are just gaining momentum for new meds.
Look after yourself.
October 12, 2022 at 9:12 am #22871
I appreciate your comments. I do try to remain positive. It’s more that I have a list of things I want to accomplish. It’s wondering how much I will do. Also 6 months seems like long term planning.
I’m a private person by nature. I did let close friends in on the news. One incident bothered me. In a recent interaction with a jerk, I was answering a question in my slow slurry speech. This person started making gestures and mimicking my speech.
Has anyone else experienced this kind of behavior?
October 12, 2022 at 4:51 pm #22872Jerry FabrizioParticipant
6 months is not long-term planning. If you want to live longer take the drugs that will help. I take Riluzole and Nuedexta. The Riluzole slows down ALS. The Nuedexta has reduced Mucas in my mouth and that has helped me speak better. Now I don’t sound drunk and slur my words. Now I can sing, I try to sing Do Re Mi from Sound of Music every day. I try to do Tai Chi also every day, Ba Dison Jin Qi Gong
I want to start Radicava as soon as I can.
I am also in a Courage trial for Reldesemtiv. There are people in this group that have lived more than 10 years and are still doing well. Fight hard.
All these things have really helped me, I can do them in private on Youtube.
I have not heard from a jerk like that. When I talk, I usually watch the person to see if they understand what I am saying. I usually tell them I have ALS before they ask questions.
Being a private person does not mean you cannot tell them you have ALS. I have been asked if I was drunk a couple of times. At work, my boss’s boss (bad boss) came over to see if I was drunk so he could fire me. I told him I was just having trouble speaking and he did not smell alcohol, so he just walked away, did not ask if Iwas OK. He did look sad though…
If people do not know what is wrong with us it can confuse them. Make it easier and tell them you have ALS. The jerks will still be jerks but you will know they have a lot of issues themselves. No normal human would treat you like that. I am sure they have trouble sleeping.
I hope this helps you,
October 13, 2022 at 2:41 pm #22876john hamiltonParticipant
Nicely said, Jerry!
February 14, 2023 at 4:01 pm #23560
you caught my eye with Nuedexta .
Are you saying you take it for Mucas? I can’t find much information.
i would love to know more
February 14, 2023 at 4:34 pm #23562Jerry FabrizioParticipant
Yes, it does help with the mucas. It helped me speak for a while. Now I cannot speak.
October 14, 2022 at 6:14 pm #22891Stephen O’NeillParticipant
Hi Dagmar, i hope you are well?
I was just wondering if anyone can point me to a pharmacy or supplier of the new drug Albrioza.
I am in Australia and am really struggling to find out where in Canada or the US i can actually buy the drug, as i am allowed to import it as an individual for my own therapy here to Australia.
Can anyone point me in the right direction please?
November 14, 2022 at 5:04 pm #23055Kim GillespieParticipant
I am new to this forum. I have read your feeds and applaud you all for bravery, courage and all that you carry with you in the fight with this disease. All of this makes me cry and wonder why. I am not telling a lie about that. My interest is in the alternative methods people have been using. What has worked, what has not worked. What makes life happier for you? Is anyone using the PEMF device ( mat) on a low voltage? Ionized water or trace minerals? What kind of nutrition was recommended? Does massage help? I am an acupuncturist wanting to help my patients with love and truth. That trust and truth thing is very hard when looking and seeking for people that lovingly embrace the client for aided health. I am wanting to learn from others as best I can. Others are the best teachers. Please keep up your good vibes and good thoughts every day, move forward and never give up! I thank you all and appreciate all that you have shared.
February 12, 2023 at 4:55 pm #23549LindaParticipant
What to do about horrible muscle spasms that start only at night??
ALSO, what about being so incontenant??? are both of these just what happens with this ALS thing????? Was just diagnosed 1/06/2023!!!!
February 13, 2023 at 11:46 am #23551
Linda, I don’t think that incontinence is associated with ALS symptoms. This should be discussed with your doctor.
As for muscle spasms… your doctor could prescribe a muscle relaxant. But I found that intermittent stretching and range of motion movements throughout the day helped me. Also, gentle massage in the evening. If it persists even though you are moving, stretching, and massaging… definitely ask your PT or doctor.
February 13, 2023 at 11:12 am #23550DuaneParticipant
“laughter is the best medicine”. Its true, at least for me it has been. My symptoms started in 2006 and I was diagnosed in 2012. I have only been taking Riluzole and a few common supplements. My overall health is good and the main problem is spasticity from the knees down and very weak ankles. My advice is to have a positive outlook, keep busy, and laugh a lot even if others disapprove. Relax.
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