Diagnosed in 2020

[Suliwaks]

Hello everyone
I hope this finds you well
My apologies it’s going to be long write up
This isn’t my first post here, I posted back in July 2020 with the heading; EMG suggestive of als. I don’t really know how to link the thread here.
Well in December of 2020, I got a second opinion from Mayo clinic and was dx.
Being a 30 year old at the time and being independent I decided to fully enjoy life and things I could still do w/out stressing and worrying.
3years down the line im still grateful i can still do somethings. But i also realise im now entering the business end of the illness and i need help lots of it.
To give an idea of my predicament, i am 33 I live in west Africa im not married and neither do I have kids but my family has been amazing with me. There isn’t a single als centre in the west. Equipment are close to non existent and I haven’t come across any pals here.
I have a couple of questions if you don’t mind.
I’m now having to repeat myself alot and it’s becoming difficult to talk. I tried looking up eye gase its all confusing to me and ridiculously expensive î simply can’t afford it. Could you recommend any and where I can get a used one!?
Also I have alot saliva in my mouth, how can reduce it
Thank you and sorry it’s abit long

 

[Mary2]

Sorry to welcome you back here Suliwaks. This is a great forum and has provided me with a lot of information and support. Right now my husband is having problems with secretions and he is taking Guaifenesin, hyoscyamine, and glycopyrrolate . Guaifenesin is over the counter in the States and the other 2 meds are by prescription. I have read here that Pineapple juice can help thin the secretions. The moderators and others will have suggestions for you. I basically wanted to say hello and send my best to you.

 

[Nikki J]

Sorry it ended up being confirmed.

I am glad you have family support but it is so hard without support services.

can you share more about your physical limitations? It is possible that there are other options besides eye gaze type technology

is your saliva issue ‘just” too much saliva? So drooling etc or do you have thicker phlegm issues too? Guifensesin and pineapple juice can help with the latter If you only need to dry out I think the solutions are mostly medicines that are prescription here. Aside from the two Mary mentioned there is atropine In liquid form. All of these drugs have been around for a long time so maybe you can get one of them there?

 

[Tomswife]

You can reach out to ALS Worldwide. <link to site asking for donations removed>
They serve 150 countries.

Peace and hugs to you.

 

[Suliwaks]

So sorry to hear about your husband and thank you for your suggestion
I have given my family to help me ask if it’s available here so I can get prescriptions

 

[lgelb]

If you look at this abstract, and then click on "affiliations," you will see a list of centers in Africa, and there is mention of West Africa in the data, where there are ALS researchers. I would then contact the center that is closest to you and ask what local resources they might have or recommend.

For use of a computer, instead of eye gaze right now, I would look at a head mouse if you can move your head, or a tongue/chin mouse (TetraMouse). Both Android and iPhones also have built in head mouse capabilities that you can try by using the Accessibility settings and also look at the app store for each for more advanced text to speech capabilities that can store custom vocabulary and so on.

Best,
Laurie

 

[MupstateNY]

In Mexico, one can go to the pharmacy and ask the pharmacist for suggestions for this or that symptom. The bigger pharmacies have the most knowledge. No prescription needed. Can you do that where you live?

Please keep your questions coming. There are experienced people here who apparently find it rewarding to help others.

Also don't hesitate to talk about your feelings and any emotional challenges you might have -- in addition to all the practical stuff.

Have you had a chance to look at the Resources page?

 

[Suliwaks]

Thank you for taking the time to respond
I am still getting used to the platform so I will just respond to all in this post.
Nikki as for my physical limitations, my hand extension is significantly affected, my dominant hand I have lost function in all the fingers but my left thumb and index fingers are still functioning, which I am using to operate but I have to always put my body in awkward positions before my fingers can reach my phone and computer.
And also as for the saliva, yes it’s just too much saliva that is the issue. I have asked and there’s Guaifenesin so I’m going to get it.

Igelb i have had a look at the abstract and there are two from neighbouring countries and I have emailed them hopefully they’ll reply. Yeah I can still move my head and chin. I do use an iPhone so I check it out. As for text to speech app could you recommend some. You said for now with regards to the eye gase, my question is will definitely need it later!? If yes then why not now. I am one of those people who doesn’t like constant changes.
Mupstateny; no I haven’t checked out the resources page, like I said I’m still finding my way around the forum. How can I get to the resource page. And also I will be sure to ask. Again thank you all.

 

[Nikki J]

Go ahead and try guiafenesin of course. It isn’t a drying agent though it thins secretions.

re apps you may have different options there but there is one called text to speech that has 35 different languages It is certainly possible that you might never need eye gaze. My aunt used a text to speech device with a single thumb. Eyegaze isn’t right for everyone The head of one of the top als communication clinics in the US specifically advises not to get eyegaze unless/ until you need it. You didn’t mention your leg ability. Some people end up using a foot mouse

 

[Marnes77]

Dear Suliwaks. I don't have much practical advice as I am a new CALS. But I just want to send my love and support to you.

 

[lgelb]

As Nikki says, there is no point in starting with eye gaze when you may never need it. There are interfaces like Tecla for the iPhone where if you can move any muscle, you can tape an ability switch to it and operate your iPhone. The Tecla supports up to 8 switches at a time.

Some people can use head tracking, blinking, and/or a foot mouse throughout. Etc. So I would check out for now what you can do with the head tracking capabilities of the iPhone, or connect a foot mouse. For those with a Mac running Ventura, the same capabilities are available.

 

[Suliwaks]

Nikki î would actually prefer a drying agent or I should start with guiafenesin first. And my legs are actually remarkably stiff going strong not so much the toes though. I can push and pull things with my legs and with support I can walk on my own but I can’t stand on my own and can’t raise very high but other than that it’s pretty good.

Hello Marnes77 Big hug to you. Thank you for taking care of us all, some times we might be a wee bit difficult please bare with us. we love and appreciate you. Send my hello to your pals.

Igeib a family member suggested glassouse to me I havnt checked it out. I will like to have 3-4 options if possible to look at. Could y’ll suggest!?

I have started constipating and I went to the pharmacy and they suggested gestid for me. What do you think!?

 

[lgelb]

Sorry, I am not understanding "glassouse"?

Gestid is an antacid and so I would not expect it to improve constipation. I would ask the pharmacy about a laxative, but also drink as much liquid as possible and try a hot drink to move things along.

 

[MupstateNY]

Senna and extra magnesium are helpful for me for constipation.

 

[Suliwaks]

Igelb glassouse is a head tracking assistive device (its available here) it was recommended to me but I just wanted to know if anyone here knows of it or if someone can please just have a look at it and tell me what they think of it.
And I went to the pharmacy and they don’t have the above mentioned but suggested Lactulose syrup which I bought so hopefully it works