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Topic Help for embarrassed parkie Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2010.06.05 13:45
I hope no one else has this problem but in case you do, please share anything you found that ha helped.

My husband cares very much how people perceive him. I wish he didn't but he does. The fact that he has PD and side effects from meds has become an increasing concern for him as he sees how people look at him and what they say. For example, we went to my daughter's school one night for some event several years ago, and as we were walking into the school we passed a parent (who I never liked anyway and this just clinched it for me) who said under his breath "drunk bastard". I'll never forget it nor the look in my husband's eyes, it was like he had been stabbed. The irony is that we don't even drink, never have!

So I have been working on my husband to help him let go of this, and I thought I was making progress until today when I asked him, for the zillionth time, to go buy his bicycle so we can begin the riding program founded by the Cleveland Clinic for PD. He's done all the research, pretty much knows which bike to get, and where to get it...but won't go. Today he tells me he is "too embarrassed" to go. It just breaks my heart. I don't know what I can do to help him.

Anyone have any ideas? I feel so bad that he feels this way, and don't understand why he does since he did nothing to bring PD into his life. I also am worried because the Cleveland Clinic's biking program has had excellent results and the more he delays, the further behind we are.

By Emma On 2010.06.05 14:36
lurking, we had the same problem for a long time and still do to some extent. The comments about being drunk are pretty common, there was a thread on the forum about it recently, it's maddening. But I digress. My husband never wanted to tell anyone that he had PD and we argued about it a lot. I kept telling him that they probably realized that there was something going on with him and if he said nothing they might assume something worse. It's really the same thing with being embarrassed (which my husband is at times). People do look but our experience is that if he just says "I've got Parkinson's" the weird looks go away and often people will nod and say "my uncle had that" or something to that effect. If they don't know that it's Parkinson's they assume that it's drunkeness or that the Parkie is a crazy old bum or something. Telling people also gives you a chance to educate them. It took a long time before my husband got comfortable with telling people that he had Parkinson's but when he finally realized that they were indeed making assumptions that weren't true he got comfortable with it. In your husband's case if he could just bring himself to go into the store confidently and tell them that he has Parkinson's and needs this particular bike for a program he's starting they will be very helpful and understanding. The other customers can think what they want. Sometimes when we see someone staring at us we just nod at them, smile and say "Parkinson's". In the situation you described at school if he had been comfortable just looking that jerk in the eye and saying "I have Parkinson's", or even better "Don't be so quick to judge, I have Parkinson's" the guy would have died of embarrassment and that would have been a good and fitting thing. I think all you can do is keep talking to your husband about it but ultimately he has to make peace with himself and his illness. Hang in there, it will happen.

By karolinakitty On 2010.06.05 15:28
As Emma said... we had a thread not to long about that ... in mine i told about my neighbor who told my mine he needed to slow down on the drinking.well ....since then

They are drunks ... plain and simple.. always going out on the boat drunk .. coming in off the lake drunk ... going to the bar and coming back drunk .. one night the guy had to carry the wife in the house...

So last week my other neighbor was down with his kids and other family members. The drunks went out and when he came back in.. he was coming in our little canal so fast and furious he almost hit another neighbors boat. the one who had the family here told him to slow down .. i called him an idiot drunk and told him he should stay off the water when he's like that he could hurt someone. Well, his wife screamed i should talk, my husband does nothing but drink all day and stumble around.
My good neighbor, told her she didn't know what she was talking about. That mine had parkinson's and she should have a little respect ... after all he's dying...
Well he embarassed her in front of her friends on the boat .. and now they can't even look at us when they go down to the boat or go out in the yard...

Mine gets a little upset when i tell people he has PD...he doesn't want people "feeling sorry" for him...or thinking of him as the guy with PD instead of the guy that has some wierd humor, or catches the big fish, i understand his feelings but sometimes you have to help people understand that there is a reason for his "drunkeness" or even the fact of how slooooowwww he is..... We try to aviod really big crowds as the slowness becomes an issue, and since he refuses to use a scooter .... again due to the fact of people thinking bad of him .... it's hard to overcome other folks perceptions.
As Emma says we need to educate but it's hard if the PWP doesn't want to go out there and say HEY!!! I have PD, and this is how it is ... Also one thing i've noticed is that my PDr is only 53, we get alot of .... well you're not very old ... as if you have to be over 70 to have PD ... i guess MJF, isn't on everyones minds as he is not on a weekly TV show or reality show ....
Well .. there ya go ... with all the reality shows on TV perhaps there should be one on PD ... we have little people with several shows, people with a gazillion kids, rock stars, bounty hunters, brides, hoarders, OCD, interventions and all the rest .... Do you think there is room for the PD person???????????

By LOHENGR1N On 2010.06.05 19:31
I have had this problem also, I described in another thread my adventures with this thinking. I was just thinking..... Sometime ago I received in the mail with my A.P.D.A. news letter a printed card. I remember this well because it prompted a call to the A.P.D.A. as on the back of this card (can be carried in the wallet) it states;

I have Parkinson's Disease.
I an not under the influence
of alcohol or narcotics. It is
not contagious, a mental
condition, hereditary or fatal.
It is a movement disorder.

Because of this, I may need
extra time to communicate
and/or transact business with you.

I called them asking why would they claim P.D. isn't fatal? The response from them was they didn't want to worry those just diagnosed with Parkinson's it is enough to handle without being told that yes you die from it or from complications caused by it. But I digress, if you call the A.P.D.A. at 1-800-223-2732 I'm sure you can get some of these cards if you want. That way if anyone makes any remarks you can discretely slip one into their hands and this is a big AND if they can read and comprehend it might help. Heck at least you can say you tried anyway. Take care, best of luck and hang in there.

By mylove On 2010.06.05 23:50
Just as my two cents, I think Emma's right. I think this 'fessing up' is a greater thing in his mind than it will be in reality. What is the lesser of two evils? Which does he want to be remembered as? The incorrigible drunk who is stumbling slurring all day long, or someone who has a medical problem? Unfortunately (or maybe fortunately, for this one thing), the prevalence of PD, particularly now that our population is living longer on average and we have a greater population of older people, means that it's hard to find someone who hasn't either heard of it, known someone who has it, or can't at least equate it to something they are familiar with, such as Alzheimers. And that's a starting point for understanding, and hopefully a little compassion. I think that once everyone knows, then his life will get easier. Expectations ease. People are more willing to help out.

I think he'll find more peace once he's jumped this hurdle. Yes, it's always embarrassing to be different. But he'll be surprised to find how many people are more willing to accommodate and it will be a relief to them, as well. The most frightening thing in the world is the unknown, and the mind can always create the worst-case scenarios. It's true for him (imagining how people will react to knowing) and it's true for the people around him wondering just what in the world is going on with him (and imagining the worst).

By shakydog On 2010.06.06 00:49
Being diagnosed with something that is understood by very few people is difficult. But it is more difficult to be seen with the symptoms and not have anyone know the real reason. I've seen the looks when I need help or I'm moving slowly. I've only been at this for 12 years and I'm able to keep going because of the support of my family and friends. Some of the symptoms can be seen in a different context, Most of them associated with alcohol or drug abuse.

I understand what your hubby is going through I'd like to help. Ask him to contact me. Or Al, he understands too. Your hubby isn't alone and fighting something that is new. Been there, done that.

By lurkingforacure On 2010.06.06 12:13
Thanks shakydog, I do appreciate that...but would be totally shocked if my hubby would do that. He has told only people he does business with because he wants them to know out of an ethical obligation, but I had to tell his dad, he won't even let me tell his mom who still has no clue. It makes me crazy but I've already posted about that before and I really am trying to move past it and just let it go...this works as long as I don't have to actually be around his mother, though!

I recently decided that he can handle HIS family the way he wants, and I was going to have to be free to handle MY circle of friends/contacts/relationships the way I need to, as far as the PD is concerned. For me, this means that when our youngest finally starts school this fall, I am not going to "hide" the fact that our family has PD, which is a huge relief for me. For the first time, I will have the freedom to tell people I cannot do this or that because of our family situation, instead of making up some lame excuse. I don't think my husband is happy about this, but I think he realizes I have reached the end of my ability to continue the facade and since I'm holding the family together right now, he has to cut me some slack. I wish it weren't this way but honestly, what a load off my mind to know that I can just SAY why we can't do something and hopefully people will understand....if they don't, well, what can you do with people like that?

I think one of the main reasons my husband has not wanted to tell people is denial...both of us thought there would be a radically improved treatment if not a cure by now, and it is hard to face the fact that there is not. And as we all know only too well, once you tell someone you have PD, there is no going back, and it changes the relationship forever. One of the people my husband told totally turned on him (even after we made a personal loan to him, I doubt we'll ever see any of that money again) and boy, it has been hard as they work together. I don't know how to prepare our children for that, if one of their friends dumps them because of the PD. I guess I'll have to include that in our talk we are going to have this summer, when we finally break down and tell them. It is going to be so hard for my husband. But I know it's time.

By Mary On 2010.06.07 11:22
This issue was heartbreaking for me watching my father struggle and being so uncomfortable with what people thought of him. I can't understand that. At 52 I no longer care what others think so I could not understand why at 75 he still cared, but he did, big time. When I introduced Dad to someone new, I started the introduction advising them Dad had Parkinson's Disease. Dad did not like it but accepted that was my way and I think it made others more comfortable. When someone would say something, make some hurtful remarked, I'd stop and inform them and also told them that Dad can hear them, he is standing right there. Hopefully some learned from it, not sure. I sure learned a lot in caring for Dad. My continued hugs and blessings to all struggling through this difficult journey, Mary

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