How do you handle being treated as if you are stupid?

[fionaheather]

My husband was a very tall, rather loud and dynamic person. With Pd he has become stooped, has difficulty getting out of a chair, speaks slowly in a monotone and has themask. People now openly patronise him and cut across him when he tries to join in a conversation and geneally ifnore him in a discussion. How do I help him deal with this...it is very hurtful, and how do I let these people know that their behaviour is unacceptable?

[drew410]

In UK parkinsons.org.uk can issue us with a Parkinson's Alert Card if we are member of Parkinson's UK. If you go to the site and input parkinson's alert card on the site search it shows what it looks like and how it is worded. I have used it a couple of times and is helpful. I'm sure there must be a similar thing in US.

Just be blunt. They are being very rude and that is unacceptable.

[lmbanni]

My husband has pd too and he feels this attitude from people all the time. I was surprised to hear this from him when I asked him your question. I haven't seen anyone treat him this way. Most of our friends say that he still looks very well and they couldn't tell that he has pd. He then explained to me that I even do it! I felt horrible!! I asked when and he said when I am tired or overwhelmed. I show frustration in his slowed movements or slow responses. He said it made him feel that I thought he couldn't think right anymore. I try so hard to have patience and show him nothing but love. I guess I am just human and get tired too and don't even know how it shows.We have always had a wonderful relationship. I was happy he felt he could be honest with me and he knows I did not mean to be rude.

Having said all that, I think people are just human and most don't mean to be rude. Especially family and friends! You didn't say if this problem was with strangers or everyone. if it is with family I suggest you talk to them and explain how pd affects your husband, The slowness and masked face, but he is still capable of having a conversation. Explain and ask them to just have some patience with him. If these people are strangers well then I would not even bother explaining. It probably would just make your husband feel more uncomfortable. You probably won't see them any more anyway. It is their sad behavior that will someday come back around to them and hopefully they will remember this is what they did to people.

God Bless you and your husband.

[fionaheather in reply to lmbanni]

Imbanni, thank you fir being so honest. I know that I do it to him too, and of course I don't mean it so get mad with myself! Our family is big and widely spread. his sibs handle it in their stride, his kids less so. The people I am thinking of are some of his "friends" locally, unfortunately people he really cares about. It feels a little bit like "you are no use to me now so..." I hurt so much for him as I watch him try to join in and be ignored .

Take care and thank you.

[wifeofparky in reply to lmbanni]

I hear what you are saying as I am going through the same thing. I try to be patient but there are times when I have to bite my tongue to keep from saying what I am thinking. I try to put myself in his shoes and be empathetic. My husband is now to te point where he will tell strangers that he has PD and it takes him longer to think and say things. Most people are understanding.

[BLinNJ in reply to lmbanni]

"Wife" says, "My husband is now to the point where he will tell strangers that he has PD and it takes him longer to think and say things. Most people are understanding."

I've found that to be the best response! Honest & straight-forward. Eyes that were staring suddenly become hands that are helping. I'll sometimes even cheerfully ask people for help, like holding a bag while I shuffle in my pocketbook. I've never had a "no." People are most afraid of what they don't understand. Public awareness begins with involving the public.

This doesn't always work in social situations, however, when multiple conversations are going on. It's hard to keep up.

[fionaheather]

Thanks I'll take a look into that, I'be never heard of it before but then I'm still learning all of this. My husband was only diagnosed this past August and is still largely in denial.

I'm not really good at blunt...but you're right, and I'll try, thanks.

[lmbanni]

fionaheather, you are very welcome. I know my husband has also gone through the pain of seeing his "friends" not come around or call much any more. He always was there for them when ever they needed something or some kind of help. It hurts me too to see it happening to him. He tells me he sees it and feels since he can't help them anymore they don't come around or need him. I can only tell him I'm sorry and he didn't need that kind of "friend" anyway. He agrees but it still hurts him. There will be alot of painfull things fionaheather. But all we can do as wives is stand with our man and help them however they want us to. They will know we will always be there for them!!

[maryalice]

I know what you mean. Sometimes I feel invisible when I'm trying to express an opion in a conversation, or even when I'm trying to order in a restaurant. Other times I see people look at me and stare and then quickly look away. I think it's best to forgive their behavior because most of them just don't understand. I've also met some really nice people that have been very kind and helpful. I know it;s difficult, but it just doesn't seem to matter to me anymore. I know my family and the Lord love me and that enables me to keep trying to live a good life in spite of Parkinson's Blessings.

[cabbagecottage]

OOOOh I feel so angry ... Parkinsons' is such a cruel illness . We both wear Parkinsons badges so if someone asks what it is I can explain so someone else has learned a little of it .

I tell them not to judge the book by it's cover the same person is behind the blank face ( which he has ) When he struggles with a conversation he will stop and ask them to bare with him .

My husband doesn't get out very much these days but we have been members of great sports and social club of which we have been on the committee of for many years . They have recently made him PRESIDENT ! . he feels both delighted and embarrassed because he realises he is not able to take part as would like to ..

I have encouraged him to keep going there but don't want other to pity us .

So I have made a point of telling especially his closest friends how to deal with him ./us .

They all want to help us , sometimes getting in the way so I thank them gratefully and say I will let them know if we need help . When he needs the loo ,doors are opened and chairs moved out of the way discreetly . He use to be very very selfconcious but gradually he has come to terms with it ..

I think a lot of people are afraid and don't know how to deal with it but gradually they are all learning .

Maybe you could explain to some of them Fiona . I have always been the docile one but this Parkinson's has brought out another side of me giving me the strength to fight for my husband .

[PatV]

Must be hard for a guy. I can tell my kids "don't be rude" on behalf of myself, but it would be hard to speak for someone else.

[Parkinson_Schmarkinson]

I encounter rudeness, condescension, or scorn very very rarely. When I get flustered and fumble my words, I smile wryly, shake my head, and say "Oh, let me start again."

BTW, I often use a backpack and I have a hard time putting on the second strap. I often have to ask for help, and people are always helpful and kind.

[Melodysam1890]

I'm not sure other folks truly mean to "be mean." Sometimes I have difficulty speaking without slurring my words & I find myself speaking slower to find the right word I want to use and my voice has become much quieter - one day my mother-in-law commented that she would have bypassed telling that story if it took so much effort (more or less). I have to think that she didn't intentionally insult the problems I am experiencing with slower, sometimes slurred, quieter-voiced speech. Some folks, unfortunately, speak before they think.

[Hidden]

I sometimes wonder how I would treat a PD patient if I didn't have and know so much about PD.

[MagicMax]

When I attend support groups, I always find the latest and greatest news concerning advances in PD research on the internet and printout several copies. Near the end of each meeting, the meeting facilitator always looks at me and asks if I have anything to share. I always have something that PWP love to hear, so when I have the floor people pay attention to what I have to say. Next I pass out copies of proof for what I am talking about. This sets the stage for every meeting. When I talk, people know I most always have something useful to say.

In other settings, I wait for an opening and speak up as loud as I can without cutting off someone else. Speaking with confidence, pausing at the end of each thought, and saying things that seem important gain one respect in any conversation. So even if you feel inside that you will die tomorrow, speak with determination and confidence today!