hi there , i’m relatively new to this forum , I have a relative who was recently ( about 10 months ago ) diagnosed with SCA and i would like your feedback on a few questions that i had :
1-how does a person cope with the speech impairment , are there any therapies to slow it down or at least teach how to adapt to it ?
2-the disease seems to be progressing rapidly , they went from normal speech last year to a slow mostly understandable slurred and bad voiced speech with occasional not understandable word , and some weakness , bad coordination and of course balance problem that comes with all of this this year ,is there reason to worry that it might be MSA ?
3-does physical therapy help ?we’ve begone walking to increase their stamina and strength, but do balance exercises help ?
sorry for the many questions and thanks in advanced
I’ve gone to speech, occupational and physical therapy. They all gave me things to help improve the various problems. If you do go to physical therapy make sure they do neurological not orthopedic. I would recommend go to therapy, not to improve but to give them things they can do to adapt. I’ve found that balance exercises don’t help. They should be focusing on their core (butt to shoulders).
thanks for the input Kay2 , I appreciate it
Hello…my main problem is with my speech.and the problem is getting worse. And seems to be appearing earlier in the day. When I was diagnosed it only came on at night but now it’s starting early in the afternoon and if I have been talking a lot it’s worse. I have found the best approach is to save my voice and don’t talk too much. (Sometimes that’s hard for me.)
hi olfella ,thanks ,i apreciate the input , keep them coming
In terms of speech therapy, I haven’t heard of any ways to slow it down, but there are ways to teach how to adapt to it. Have you contacted an SLP? An SLP could help set your relative (and you) up with an alternative way to communicate for those times it is difficult to. For example, your relative could be taught how to use a speech generating device (usually an ipad with a special program on it). There are also programs/organizations that will work with a person to preserve their voice so that a speech generating device can use the person’s actual voice (instead of a computerized one). If the high tech route doesn’t appeal to you/your relative, there are other options. It would be best to contact an SLP to talk over options and what would best suit your relative.
These are options I’ve kept in mind for myself and my family members, but I personally haven’t explored them yet.
#1. I have personally not taken any speech therapy, however, I should. my family has a hard time to understand me. And I find myself repeating a lot. My speech among other symptoms are also progressing fairly fast. I’ve heard that speech therapy may also be beneficial for breathing and swallowing.
#2. From what I understand MSA is incredibly hard to distinguish from other types of ataxia. It is only after careful ruling out of other ataxias that MSA is diagnosed, and even then it is still not a positive thing. My neurologist has suggested that I may have MSA but several indicators are unclear for me. Unfortunately/fortunately we tend to be all different as far as progression goes.
#3. There are many exercises (PT) that may help. In most cases the patient can do these from home safely with a partner. If nothing else the exercise may help with mental wellness as also.
I personally would not concentrate on balance exercise as much as core strengthening. Balance seems to come naturally with a strong core. Certainly walking does help and carries many benefits. Although watch your relative does not over do it. I can no longer walk any distance with out becoming too tired. This is frustrating because I was able to go further at one time.
All the best.
thanks again Dave ,“if nothing else the exercise may help with mental wellness also” this is really important ,so exercise has to be done no matter what , i take it from what you said about your speech that you’r not overly obsessed about it (correct me if i misunderstood ) ,if i may ask , other than wanting to be understood easily , does the differing speech annoy you particularly ?or is it something that can be overlooked if you have a positive attitude ?
thanks bookworm ,no we haven’t talked to an SLP ,the options sound promising but i’m worried the high tech ones make them feel too odd , ofcourse , eventually they will probably need them , but for the moment , we’ll try to seek old fashioned speech therapy .
Sorry for the late response, having internet troubles. My speech impairment does not particularly bother me. I have to learn to slow down sometimes, a sort of self speech therapy!
I have somewhat of a positive attitude, and that more often trumps the embarrassment of speaking wrong. If folks can detect you are struggling they tend to become a bit uncomfortable I find. It can be occasionally frustrating to not get the words out properly, it’s like you can hear yourself say it right, but it comes out wrong! Generally friends and family have adapted to it, and have learned to listen really well.
it’s okay Dave , same here , yeah , i agree , a positive attitude makes a huge difference , and it’s good that you learned slow down by yourself