How do your communicate with Apraxia of speech?

@merrychristmas Is the apraxia of speech due to a stroke?

Do you have someone who can call for you while you are present? If yes, then switch to Speaker Phone and let Mayo Clinic via your friend or family member know what you are doing. If you are able to write can you then let your friend or family member know that you will write what you want them to communicate to the Mayo Clinic while you are on the phone? If you do not want to drive to Mayo Clinic then you will need to ask if a physical exam is necessary for your symptoms. If not, then you can ask for a virtual appointment.

Does this help?

Respectfully, no it wasn’t helpful in my case . I didn’t have a stroke. I have PPAOS . It was not an appointment, it was the RN call line. The clinic and Urgent care was closed. It didn’t meet the criteria for a trip to the ER.
I didn’t want anyone around me because I was ruling out Covid
The point is —it’s not very ADA friendly if I can’t text.

@merrychristmas PPAOS refers to Primary Progressive Apraxia of Speech? Is that correct?

I can understand your frustration that you cannot text to the RN call line. That's a problem. What other options are available to you?

Hi @merrychristmas, point well taken. To be ADA compliant, a patient tool needs to have options for effective communication. I'm bringing in @rlu0817 to make her aware of the limitations with the patient portal when using the RN "call" line.

While the onus of adaptation should be on the tool not the patient, you might be interested in some of the tools that @elizabethlewis2852 mentions in this post https://connect.mayoclinic.org/comment/1169177/

@merrychristmas, back to the issue at hand. Have you been able to get in touch with your care team today?

Thanks for bringing this to my attention.

@merrychristmas, I hope you are feeling better. Have you been able to contact your care team? I agree it's a shame there is not a TTY (teletypewriter) option, but this available for a lot of other companies, just FYI. Search their name and TTY and you should find the number that will allow you to type instead of speaking on a phone call.

Have you used the relay call (RTT (real-time text))? This is an accessibility feature that allows you to call a number, type your message, and an operator relays information to/from who you're calling. This should work with the RN line. If you try it with any of the Mayo lines for other needs and it does not work, please let me know!

Alternatively... do you have an Android or iPhone? Have you used any speech apps on your phone? If you have an iPhone, you can also use apps (like Text-to-Speech or Speech Assistant) while on a phone call and the messages you type/ play will also be heard on the other end. Android does not yet support this, but if you have a tablet or another place to use the app, you can use them while on the phone.

I have corticobasal syndrome that started out as PPAOS, so I know your burden. Can you conference someone to help on your calls? I do that with my daughter.

In January I am trying out options for tech help. I haven’t seen them yet, but my speech therapist says they can help with calls, turn on your TV, your eyes can them give directions. The text to speech are not good over the phone.

I am sorry that you’re going through this.