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Topic Finding words to express Go to previous topic Go to next topic Go to higher level

By Lynnie On 2010.01.17 16:50
My husband was diagnosed with PD over 2 years ago and he is just 61 years old.
He was always quiet long before he got this disease. Now when we are in a group, he doesn't add to the conversation or start a conversation because he finds it difficult to express themself sometimes. The problem is that when he is talking, a lot of time he forgets a simple word and it takes time to find that word, if you know what I mean. It's very hard on him, so therefore he doesn't talk that much because he is afraid he might forget a word again.
I think it has alot to do with stress, but he doesn't really talk that much when we are eating lunch or dinner together unless I start the conversation. He is just concentrating on eating, half the time.He used to do a lot of business on the phone, for example calling a phone company, but now it really bothers him, so I do most of it now.
Should try to get him to talk more and do more calling. His tremors increase with the stress and that doesn't help either. He started to go to the Parkinson's support group with me last year. After about 4 meetings, he doesn't want to go anymore and I thinks it's because he has problems with the conversation part.
He does visit neighbors occasionally by himself, so maybe he's better when I'm not around?

What do I do, just leave it alone?

By annwood On 2010.01.17 18:02
The main objective is to reduce stress. If conversations bother him I would not put him into this situation. I believe that it takes more time for many PD pts tp process info and they are also intimidated when they have to speak. Encourage him to engage in conversation with you one on one at home.

Stay with us.

By LOHENGR1N On 2010.01.17 19:12
Inside Parkinson's but only my view. The phone? Now that's a tough one. Parkinson's also affects our volume, many times I'm asked what did you just say? Or can you repeat that? Or I'm having trouble hearing you, you're mumbling or speak up. Or the "classic" something wrong with your phone? These remarks come not only from others but family members also. With cell phones, head sets and all this gadgetry people are talking more and more in places that a few years ago you'd never think to be phoning anyone, why? Because these places are noisy and hard to hear in. With our speech affected We have to project push out or up our volume. I can tell you it is tiring to carry on a conversation like that. At times it is almost exhausting. I'm not much for the phone anymore, if I ever was. Also the companies now have their menu of push this and that......with tremors good luck! We double or triple hit buttons, they are a nightmare! Trying to get a live person on those things? Then if you're lucky enough to get a person they tell you to SPEAK UP? Talk about stressful?

Lynn yes your husband is probably trying to concentrate on his food when sitting at the table. Instead of trying to engage in a running chat maybe chat which requires just a short response. (just think about it along the lines of it's better to have a quiet dinner than him aspirating food, having it coughed out at you, you trying the Heimlich maneuver or a call to the ER.). You can try radio or CDs play some favorite songs and encourage singing along (We all have some ditty's we like and sing to even if we forget some words we fake it.....come on I do and I know you do too). As Ann said I wouldn't force it, that can lead to resentment on both sides you you're only trying to help. Him you're trying to force me to do this.
Lynnie don't let your husband read this part***

The support group.......ok this might be the easiest of them all. Do you still go? If not start going again, after group at social time find someone to talk to, bring up on the quiet your concerns about the non speaking. I'm sure you'll find someone willing to help. Suggest if they will sitting by your husband next time he comes. During the meeting they can lean over and say things like I sit way back and nod my head at these meetings, I can't talk loud and sometimes I can't quite get the word I want so I just sit and nod. I like the coffee or cookies afterward and the one on one talk but in front of everyone? Nope I hide back here. Something along those lines. Your husband will feel a comradery with them and probably look forward to going again. Hey it's worth a shot. This Disease rob's us of so much it's not just tremors as many people think. Take care, best of luck and hang in there.

By karolinakitty On 2010.01.17 21:07
My PDr is just 53 and we go through the same thing. He has a hard time remembering certain words. They just don't come and he needs time and quiet. Don't interject what you think it may be, because that only throughs him off too. So you go through this silence, kinda like dead air on the radio. Just waiting for that word to come. I am used to it and it doesn't bother me.
We go to a flea market now thurs, fri, sat and sun. He talks with alot of folks, other vendors, but is still self conscious about losing the words. He has good wit and that helps. Most of the other vendors know he has PD and with them asking me questions are quite polite in dealing with him when this happens. I think if he finds those that don't stare and avoid heavy conversation he just might feel more open about getting in one.
We also don't so much talking at dinner. I usually finish way before him and just watch the news or whatever while he's finishing and THEN we get into the conversations. It probably seems odd to most but we have found it best to work around these little nusances, rather than letting them get to us.
I too do all the calls and take care of business over the phone. Any other business dealings we have, he will start the talking but if he gets lost he apologizes and asks that i continue. Most folks don't look at it as a hinderance because i have all the info and can get it to themquicker.
Now not to sound demeaning, but you almost become the man of the house, even if your man, still has no dementia, there are things you slowly pick-up during the course of this disease. Utmost important is to still let him have his dignity and respect he deserves.
i don't get on him and say let's hurry up unless we're messing around. We often have the two stooges going here, we make fun of it as to lighten the hardness of what is really going on. When talking about things and he'll stop and "oh Heck" what is that word, he'll start speaking in a mexican dialect, speaking spanish as he is fluent in it, then stop and go.....Now how come i can speak spanish and not english....
Like i said we have fun with it at times but when it comes down to it it's so hard on them to not find that word.
We don't go to support groups, but that is just us. there are non close by and we have the computer and the flea market.
It's a lot easier, right now for him to interact with other PDrs on the computer. He's found lots of folks there and it helps to have someone else to talk to so you don't have that I'm alone feeling..

By Emma On 2010.01.18 04:55
Shortly after my husband was first diagnosed with PD he was in a situation at work where they were doing training and the trainer was calling on people to read outloud. My husband, who has an MBA and can (or could at that time) read perfectly well, went into a panic. He was extremely anxious and didn't want to go to work on those days. He finally talked to me about it and said that he was afraid he would stammer or not get a word out right and people would laugh at him. He has the same issues with speech that others have mentioned; low volume, trouble getting the right word, and stammering/slurring. All of those things make him less willing or able to talk. The other thing, as someone else mentioned, is slow processing time. It takes him a long time to process what someone else has said and then formulate an answer. This is especially difficult in groups of people where there are multiple conversations going on and lots of people chiming in. The holidays, with lots of family together in one place, were very hard for him. He just can't keep up and feels left out. It's also difficult for him on the phone where he can't see the other person to get visual cues from them and he has background noise distracting him. We try as much as possible to arrange visits with just one person or one couple at a time because it's easier and less frustrating for him. I do most of the phone calling, partly because of the voice problem but mostly because of dementia now. It takes time to sort this all out, figure out what's going on and incorporate into "the way things are now". Hang in there.

By caregivermary On 2010.01.18 11:15
Depending where your PWP is on this journey, the Lee Silverman Voice Therapy program may help. Check it out on the web and contact local outpatient Speech Therapy centers assoc with a hosp to find out if they offer it and if your PWP qualifies. If you go directly to the Lee Silverman group it will be more expensive than going to a general outpatient center. Your Dr. must order too.

By packerman On 2010.01.18 12:12
my PD husband(53) just finished the Lee Silverman Voice Treatment (LSVT) therapy in December (16 sessions).
what a difference! i can understand him on the cell phone, hear him from another room, and he can order for himself without me having to repeat to the wait staff. it does his self-esteem a world of good too, when he can manage without my intervention.
i would highly recommend it.

By Lynnie On 2010.01.19 13:48
Thanks for all of your imput. I won't try to fill in the word he is trying to remember.

I didn't tell you that we are also moving from an farmhouse where my husband has lived all of his life and building a townhouse in town. We've been busy for several months getting rid of things from the house and barns and sold our house. We've been busy picking out carpets and floors, kitchen, colours etc. He thought it would be better to move now when he has more energy. He is finding it difficult to do things around the big yard. It takes almost 4 hours to cut the grass! We thought by downsizing he could enjoy other things like golfing and riding his bicycle.
He is good at helping to pick things out with me as he has a good eye for colour and we agree on just about everything, so it's been easy that way.
I've done all of the calling if we need to speak to the builder or kitchen people but we always go together when we do business with them, so that is a good thing and keeps his mind active.

The talking at the table during a meal isn't really isn't as bad as it sounded and he will say something if he has something to say. I guess he's always been on the quiet side anyway. Some people can talk to much, eh, and so I should be thankful.

I guess you might say it the energy factor that makes things difficult for him and he is slower at doing things too, but I just have to be more patient.
We don't know what the future will bring, but in the new house we have widened the doors and made the bathroom larger .
Thanks again.

By Lynnie On 2010.01.19 13:51
Also I am the same way about talking on the phone. Sometime they have to speak to my husband because of security reasons, but then I'll get on the phone afterwards to get things straight. He gets more confused when it comes to business.

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