I’m in a bad way. I would seek therapy, but I can’t talk. Any words of wisdom?
When you say that you can’t speak does that mean that you can’t make any sound? I would make this suggestion that you might consider learning sign language such as a deaf person might learn. I would imagine there are specialized therapists that use it in their practice.
@Chas521 made a really great long term solution. In the shorter term, I would encourage you to find a therapist who is willing to communicate with you via written communication from you. It’s not perfect, but we definitely want you to have a way to work with a therapist. If you don’t have anyone close to you who can make the initial contacts, you may well be able to do that by email.
Sharon from ModSupport
There was a recent posting about various services that can provide digital voice apps.
I believe this was the link.
Communication aids service | MND Association](https://www.mndassociation.org/support-and-information/our-services/communication-aids-service/)
Good luck. I hope you can find the help you seek.
We all feel for you. I am fortunate I banked my voice for this kind of happening. Well done in contacting us, but you really need special help which is without doubt out there. The future is positive with this help. You have taken the first step, there is an adage THE FIRST STEP IS THE HARDEST and you have made it well done now make contact with the medical specialist. Peter Ashbourne.
Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.
Aphasia typically occurs suddenly after a stroke or a head injury. But it can also come on gradually from a slow-growing brain tumor or a disease that causes progressive, permanent damage (degenerative). The severity of aphasia depends on a number of conditions, including the cause and the extent of the brain damage.
Once the cause has been addressed, the main treatment for aphasia is speech and language therapy. The person with aphasia relearns and practices language skills and learns to use other ways to communicate. Family members often participate in the process, helping the person communicate.
A person with aphasia may:
- Speak in short or incomplete sentences
- Speak in sentences that don’t make sense
- Substitute one word for another or one sound for another
- Speak unrecognizable words
- Not understand other people’s conversation
- Write sentences that don’t make sense
Copied from www.mayoclinic.org
I cant advise but the responses already given sound very helpful. I just wanted to say, I hope you find a solution and wish you well xx
Thank you so much for posting this information! It was exciting for both my husband and I to read it since it has been a concern for me off and on, with how the ataxia affects my speech at times. After a second seizure this week, we realized we needed to expand our sign language vocabulary more than a simple Yes or No to questions he asks me. (Even those two words alone can be quite helpful because they are very easy to learn.) 25 ASL Signs You Need to Know | ASL Basics | American Sign Language for Beginners - YouTube For some reason, when I get too cold or too hot, it affects my speech and sometimes it goes into a seizure. But sometimes it doesn’t, and I just have slurred speech for a few minutes. I love the fact that the voice banking is available. I actually got a little choked up when I read it because losing my voice at times has been really hard–in the back of my mind I do wonder how long I will be able to keep speaking normally, for the most part. This was so cool to see and really made my day. Thank you again for posting it!
I can’t talk (most of the time). I can’t keyboard or write. The symtoms can get better as the day progresses. They don’t much do that any more. As you probably are aware, emotion, good or bad, can make you worse. I use a tablet with a stylus. Sometimes I can’t do that. I have had speech therapy. It didn’t seem to help. I don’t have any points to help you. I just want to share. Sorry I’ve not learned to paragraph with this application. Jericroth
I forgot to say I’m in a wheelchair and a nursing home. Not fun.
Hi jericroth, welcome
I use an iPad and stylus myself…
Have you been diagnosed with a specific type of ataxia
Thank you so much for responding! I, too, have problems with my speech. I have had speech therapy when my speech was better, actually. It really didn’t help. As for sign language, not enough people in my inner circle know it for me to justify learning it, although I might look into the limited version. I think someone mentioned it. I still live at home, fortunately, but I do use a walker. I use a wheelchair when I go out. There’s too much walking! My balance, speech, and handwriting are all atrocious! I thought at first that it was going to be mild, but I was wrong. It seems to have progressed pretty quickly! It stinks! It’s hard for me to do things, but I try! The worse part is that because of my speech - or lack thereof - people think I’m stupid! That’s annoying!
No . . . I’ve tried to self diagnose but don’t fit all the criteria for any of them. I guess you’d call that borderline mixed. I do think it’s idiosynchratic. The symptoms fit one of the inherited types. Mine is not inherited. I don’t know how to paragraph on this tablet. I have an inexpensive 10" Amazon Fire tablet. You can’t beat it for the price. The resolution is marvelous.
I understand the “people think I’m stupid” scenario. It’s the same being in a wheelchair. Plus they think you are also deaf. As far as the problem with speech? I just assume they think I’ve had a stroke.
Hi It must be so difficult if you lost speech I’ve been lucky so far. Can’t understand why BSL and American sign language are different though. I used to support young people with a variety of issues. Some used a simpler type of signing - Makaton . Although this is more limited it is much easier to learn. Hope this helps someone. Take care.
Thank you for mentioning this Issy…I had never heard of Maketon…but no doubt there may be a specific need for sign language in the case of people whose sight is ok…but their voice has failed.
It’s possible sign language isn’t mentioned more frequently because so many of us have vision problems, and in those cases Voice Recognition/Voice Banking can be so helpful.
AtaxiaUK have introduced this…
We are delighted to announce we can now offer funding for Friends of Ataxia UK to use Voice Banking via a company called SpeakUnique.
There are 3 options, Voice Build, Voice Repair and Voice Design which will allow anyone with ataxia to have a synthetic voice that sounds how you want, no matter how badly your voice is already affected.
And, there is a specific group on Facebook…for anyone who is interested
Speech and Language Therapy UK Support Group
Hi Beryl Many thanks for info on
Voice Banking. I looked at rhe site and found it very interesting indeed.
Many years ago I worked as a Learning Assistant in college and decided to do a basic Teaching Qualification. I did an assignment entitled Communication for all,. I also supported students with voice synthesisers - very basic in those days and Makaton signers.
Hopefully I won’t need this type of help but it’s good to know it is available if I dio.Take care Issy
I feel terrible - I just saw this! Just reaching out. Please let me know if you still need support.