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Topic Communication Go to previous topic Go to next topic Go to higher level

By pinki53 On 2017.05.15 18:53
DH's voice quality is so poor that most of our friends and family can't understand him and look to me to interpret. Problem is, I usually can't understand him either. He may have one day or part of one day a week that his voice is clear. His voice is also very quiet. He has had LSVT twice and would not do his "homework" during the therapy or continue exercises after.
I bought a couple of dry erase boards hoping he'd write large single words to communicate but he tries to write full sentences and writes small and cramped just like he does with paper and pen. His handwriting was never great to start with but is not legible at all now. Can't get him to print large.
A therapist gave him a sheet of paper with letters like a keyboard telling him to point to and spell out words. He doesn't remember the placement of the letters on a keyboard and takes forever to find the letters.
We had one that was alphabetical but it was small. I need to print a large one.
I also bought a voice amplifier (like a speaker in a large group would use if they didn't have a PA system). It's small and portable and on the rare occasion his voice is clear it actually helps. But he has to hold the "mike" literally on his lips. When his voice is mumbled and slurred, it just amplifies the mumbles.

When I can't hear or understand him (especially when I'm driving) I tell him so. I ask him to stop talking unless it's something that he must say at that moment because it stresses me terribly when I can't understand him - again especially when I'm driving. But he just repeats himself over and over every time I say I can't hear him. He doesn't get louder or more clear.

Sometimes when I'm trying to find out what he what he wants to eat he may have to repeat it a dozen times or more. When I think I know what he says, I repeat it to him and ask him for a yes or no if I got it right.

So are any of your experiencing this problem and do you have any suggestions? This is one of the most stressful things!

By LOHENGR1N On 2017.05.15 20:07
Hi pinki, sometimes simple things we overlook help. And always try to remember it is caused by the disease not lack of effort on our part. Is the television muted or turned way down? If a radio is on is it turned down? Cutting out background noise really does help Us communicate easier. When we are trying to talk is the person in the same room if not do they come into the same room with Us? You really would be surprised if You knew just how much energy it can use up on Us trying to project our voices, it can literally wear Us out. Micrographia is a sign of Parkinson's Disease. It is a change in writing with the script becoming smaller. So trying to get him to print large is a challenge not unlike trying to stop a tremor or drooling it is a sign of our disease The best thing to do is try to get him to print because after every letter he stops and begins again with the next letter. His repeating over and over when you tell him you can't hear him most likely he thinks he is saying things louder so you can hear him. It may help or it may make visitors a bit angry but tell them to quite down, pay attention and really listen when he talks to them it might help hear (many times people will come visit and be talking or listening to background music or t.v. to stop and really listen can to some be an effort they don't want to exert it is easier to ask you. You might have to say listen again I'm making coffee or snacks and can't get in there right now. It's a constant battle with one thing or another all the time with this disease hope this helps at least you know you are definitely not alone fighting this problem

By pinki53 On 2017.05.15 21:29
I always mute the tv. Our neighbor does also when he is at their house.
In the van while driving I never even bother to turn a radio on. If the windows are down, I roll them up. I turn the fan down to reduce that noise. I tell him the tires cause road noise that keeps me from hearing him. I lean toward him even while driving. At home I get up and go to him - even when I get inches from his face if the speech is mumbled and slurred (as if drunk) I still can't understand it.
Yes, I know it is a great effort for him. Yes, I know when he repeats himself he THINKS he is getting louder. Yes, our friends and family know to try to get quiet when he speaks (however there are usually 15-20 people at my sisters for dinner on Sunday so....). When he is sitting in his recliner and I'm in the kitchen (just a counter between us - open space design), I sometimes stop a dozen times and go to get near him to hear him.

I know the difficulties he has.
I guess I'm just frustrated. I don't know what else to do.

By lurkingforacure On 2017.05.15 22:19
We have this as well. And it is so very frustrating. I tell my husband that he speaks to his armpits, because he leans to one side and hunches over, and when he mumbles something, it is directed into an armpit-impossible to make out what he is saying.

I have noticed that he very often will wait until I am halfway or all the way up the stairs before saying something, which means I have to come back down the stairs to tell him I can't hear or understand what he's trying to say, and to have him repeat it. It is never anything important, and is usually a comment about something that did not even happen, as we hallucinate so often now (there are a bunch of men playing baseball in the street in front of our house (which is impossible as our street is very narrow and curved), etc.).

I broke my foot running to get him his walker so he could get to the bathroom a few weeks ago (why he didn't have it with him is another and ongoing issue), and so now this back and forth, saying something to me just as I get out of earshot, so that I have to come back downstairs or walk across the house to get to him, is more than the usual frustrating. Plus it is a total pain, literally, to have to do that and I'm supposed to be taking it easy-ha!

I don't know any caregivers who aren't dealing with this issue, unfortunately.

I

By pinki53 On 2017.05.15 23:48
Exactly Lurking! Always let me sit back down and put my recliner back before he says something. So I get up and down and up and down and up and ....well.....
I've even asked him to mute the tv before he says something to me. But I'm discovering he doesn't seem to remember any of the things that are repetitive - like how to put his arm around my waist for me to help him up. Or the same motions we go thru for dressing; it's like he doesn't remember.

And being without his walker? :) My DH will leave his walker at the kitchen counter and hold onto the counter and furniture to get as far as he can. He also has 2 electric power chairs (one inside and one outside). He constantly tries to go out the door with the inside chair or tries to come into the house with the outside chair. There is a metal part of the door frame at the bottom of the door that makes it very hard to get a chair over. But he can put the speed up fast enough to make it go if he's a mind to. :)

By flowers12 On 2017.05.16 00:39
Nothing changes, nothing will get better, I don't know if they are aware of what's happening to them and to us. Thank goodness if they don't suffer from the sadness and frustrations we do. It's a devastating disease and I pray I can weather the storm. Who could ever imagine our loved one this way? Life is hard.

By pinki53 On 2017.05.18 11:14
I absolutely cry sometimes when I can't understand him.
Yesterday he had dental surgery - 2 top back teeth pulled and implant rods put in for crowns and a bridge later.
It is so frustrating not to be able to know what he is saying; what ne needs.
I play a guessing game. Did you say """"""? Ok, did you say """""""?
and on and on till I get it right.
I can't imagine how it makes him feel that he can't communicate.


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