Alternative diagnosis that would qualify me for Team Gleason?

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MupstateNY

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My first EMG was in July, my second in September. I will go back for more testing in a couple weeks. My neurologist (I like him a lot) has so far not been ready to give me an official diagnosis, but he's been very supportive, in terms of ordering PT and speech therapy on the basis of my symptoms and my ongoing evaluation.

I would like to start voice banking before my voice degrades further. I have applied to Team Gleason. There is a form to fill out, in which I'm supposed to put down the reason I want to do voice banking. If I put "ALS," then they want my date of diagnosis. If my neurologist formalizes things next time I see him, then I'll be all set to start the voice banking. But if he feels that it's too soon, then I'd like to ask him for an alternative diagnosis that would open the gateway to the Team Gleason support. My question is, can you helpful folks suggest some possible diagnoses that I could ask him about?

My speech therapist is in agreement that I should start the voice banking, but she doesn't have any specific knowledge about it. I don't live in a major metropolitan area.

Please note that I was not able to add to my previous post in this forum, hence, I had to start fresh. I apologize, I realize that I'm only supposed to have ONE thread.
 

Nikki J

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modeltalker is free until you need to use the voice. You do need a laptop or desktop and a microphone. I think right now it has to be a windows device. They were having issues with apple devices. Your st might contact the Jay Fishman ALS augmentative communication clinic for advice too ( childrens in Boston). I don’t know if Gleason would accept an MND diagnosis or if your doctor would entertain that. I have also seen video of John Costello from Childrens using Acapela to create what seemed like a good quality voice from a series of randomly recorded messages
 

MupstateNY

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Thank you. I need two languages and Acapela does offer that. So far I put in dysarthria, which the speech pathologist diagnosed. I couldn't tell whether my form was accepted -- there was no confirmation message on screen, or by email. I'm going to write to Acapela support and ask if I filled it out right. I'm not sure if dysarthria is sufficient. I'm wondering, if my neurologist isn't ready to give me the death sentence yet (but everyone dies sooner or later, right?), then can anyone think of some other diagnosis that he would be less hesitant to give me, that would qualify me for the Team Gleason funding. I'm also going to check if Team Gleason has a support email.
 

lgelb

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I don't think Acapela is going to blanch at dysarthria dx'd by a SLP. If needed, your neuro could state that MND is one of your differentials, if that's the case.

The dx code has legal significance so no one wants to jump too soon...yes, TG has email.
 

MupstateNY

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Thanks. You're right! In theory they approved me a little while ago. Now I'm just waiting for the actual invitation to arrive. Support is looking into it.
 

MupstateNY

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I learned today about a gadget for my R index finger to make typing easier, but I'm having trouble finding one to buy. I found one on Amazon but some reviews said it was quite uncomfortable. Suggestions?
 

lgelb

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Depends on which muscles are weak, and your setting, but a few ideas to consider:

Use a Bluetooth kb or touchscreen you can tap on instead of typing, or a virtual keyboard that ultimately can be used with an ability switch, eye gaze, a head mouse or tongue/chin mouse.
Use static or articulating forearm/elbow supports (on Amazon as ErgoRest brand)
Start considering or using dictation software (basics now built into major OS, upgrades available). You can dictate on one device and xfr to another.

If you share what devices you are using, we could be more helpful.
 
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MupstateNY

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Thanks for your response!

I've been a strong typist since I was in my 20's and would like to continue typing as long as I can. I can remember being clocked at 90 wpm at Manpower back in the days of typewriters (and that was with no errors). I'm interested in buying what I see in a video on the acapela website. <commercial link removed>

When I look for this product online, I find a totally different product.

Can anyone recommend a really good assistive tech person I could meet with via videoconference? I have Medicare, so I'm not limited to providers in my state.

Bonus questions: the acapela videos demonstrating the synthesized speech were disappointing. Is there a better brand? I need both English and Spanish.

Also, I'm starting to have some trouble with the mouse. <link to site soliciting donations removed>
I wonder if others have liked the vertical mouse. I don't mind getting a starter mouse now, and a fancier one later.
 
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lgelb

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Every state has an assistive technology agency that can lend you things like a vertical mouse (you can also just buy one and return it if you don't like it, but we had the Evoluent for a while and it worked OK) .

And if you check in with the local spinal injury program (if not your clinic), you will generally find AT help is available though SCI pts are prioritized. The national ALSA also has a specialist but she is out of date.

Besides the NY AT bureau, sites to check out include AbleNet and RJ Cooper, and Google whatever device/OS you use + assistive technology or augmentative communication.
 

MupstateNY

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Thanks so much for the suggestions. I will try to find the assistive tech agency for my state. Also, I will try the local county independence center. Maybe they will have a few things to try, in addition to the usual wheel chairs etc. (I borrowed a transport chair from them to help me go shopping with my husband or my son.) If I strike out I'll try your other ideas.
 

MupstateNY

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A couple questions. I read Level of care to expect???. Shocking.

(I wonder if Tomswife has tried contacting the hospital ombudsman / patient relations? I realize those offices aren't always helpful, but sometimes they are....)

At that thread, I read, in Post #14, written by Clearwater AL, "the new trend is to not go to clinic after the first or second visit."

Q1. Why is that?

Q2. What alternatives are there to clinic for the things that a neurologist or primary can't do / arrange?

Q3. Does "clinic" mean the same thing as "ALS Center"?

I will soon be having my second visit to my closest Center. The first one did not impress me -- the doctor wasn't interested in me as a whole person with all my symptoms and changes, and she gave no weight to my neurologist's EMG results, thorough office notes, and strong suspicion of NMD.

Also, I have booked a first appointment at the second closest Center. First available is February.

Q4. If we drive a bit further... I wonder if people could tell me which centers in New York State, Massachusetts, Connecticut, and New Jersey are helpful, reasonably user friendly, and reasonably quick to get into?

Q5. I watched the English, Spanish and French demo videos of synthesized speech for Acapela. I was disappointed in the intonation and rhythm. Has Acapela improved since the demo videos were made? Is there an alternative piece of software that does a better job? I only need English and Spanish.

Q6. My speech therapist knows nothing about voice banking, and appears to have little or no interest in learning / supporting me through the process. I read a great tutorial from Boston Children's Hospital (see attached). How do I find someone who will support me in the process? I realize I probably won't find someone who can fully implement the BCH model, but I think I would benefit from SOME support.

Q7. If I want to snowbird to a somewhat warmer climate, close to a really good Center that could get me in reasonably quickly, where would that be? Let's limit it to the East Coast. I would not like to embark on a cross-country trip at this point!

If anyone can contribute to even one of these questions, I'll be very grateful.
 

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lgelb

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It seems premature to comment on ALS clinic/center issues/choices given you are as yet undiagnosed and I don't recall your posting an EMG (feel free). But if you head over to the search button up top, you'll find many posts that bear on your questions.

If you contact Acapela and Modeltalker, I'm sure they can link you to the most recent demo. Voice banking isn't the same as your own voice, though -- it's applying some of the characteristics of your voice to a synthesized one. That's why many PALS don't do voice banking -- it's a lot of work and the synthesized voices I've heard (including Acapela ones) are perfectly serviceable to communicate with.

Another option is first to record what messages you would like to be in your full voice, to family and friends.
 

Nikki J

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A 2-3 month wait to be seen at an ALS center is pretty normal so you probably won’t find anything significantly earlier than your existing February appointment. I think that was why you asked about different places but other than getting in right away I can vouch for Mass General and UMASS.

I thought the acapela video of John Costello was really good. Did you not? Of course he has no voice issues so his voice probably came out better than anyone affected.

Jay Fishman center does remote consults sometimes. Also since you indicated willingness to travel to Massachusetts you could try to get an appointment there. Since one of the authors of the attached article directs that center they are obviously familiar with it. Although it is Boston Childrens their physical offices are in Waltham MA
 

MupstateNY

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Thanks so much for your answers. We own two Zoom recorders (several musicians in the family). We bought the second one when the first one went missing. Now we found both, but neither one of them seems to be working currently. I've tried to find instructions on the web for using Audacity for message banking, but all the links are either dead, or they just say "Download Audacity." Any suggestions?

Thanks for the Costello suggestion. I found his youtube channel and it looks really helpful. From the one I watched so far, it looks like typing the comma is helpful, and I noticed that he left tiny pauses between words. I could do that!

Does the forum have a how-to for message banking? I guess my next step is to dive into mymessagebanking.com? Hopefully I can use Audacity for now?
 

KimT

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Have you tried any Facebook Groups? They're a good source of information.

Sadly, the wait is pretty long everywhere.

I think most of us still have ties to ALS centers (clinics) but many of us decided to get a team in our area that can help us with just about everything. Aside from the diagnosis and clinical trials, I've found my local doctors to be more in tune with my needs than Mayo Clinic.

If I were you, I'd get an opinion from Mass. General, even if I had to wait.
 
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