I think this web site is sooo great!! My husband on the other hand not so much. He is a parky and does not want to read or visit with other parkies. He says it gets him more depressed. I read some of your questions and answers and I can see it HELPS him!!! He says things like.... they feel like I do, and wow, I feel for them that sounds worse than what I am going through.
I really think it would do him good to talk to others going through the same thing!! He talks to his friends about it all the time. I see he has lost a couple of friends due to them being uncomfortable and not knowing what to say. If they do try to give advise, he is one who always has something to say as to why it won't work or help.
He is also a thinker and figures out things very well on his own. he has always had to rely on himself. That habit is hard to break. Life was very hard for him before we married. He was 25. He is now 62.I thought being together so long and having a life long partner to help him would change him but it hasn't. He knows he has this issue to work through but ......
Anyway, I would like your opinions. Should I push my idea about support groups or not?
Thank you!! Mary
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Thank you Jill. We are in USA. We do have family near by and they suggest different things to him but he does not do many of their suggestions. LOL!! I guess he is not going to change!!
What is the Virual Party? Do they have it on this site?
My wife says that I should get more involved with support groups and I always tell her that I come to this site for support.. This site always cheers me up. .And I don't have to drive anywhere. This might not be the answer to the question you are looking for but it is the way I feel.
I appreciate your answer. I wish he would get interested in this site!! That would be great!! Whenever I read something that I think will intrest him I read it to him. He tells me to stop reading all this and that it will depress me. I think it helps me understand him a bit better. I am happy it helps you!! I wish he would at least try it too. Maybe if I keep reading some of the posts he will get interested too. I can only hope. I love that he wouldn't have to drive anywhere too!! I think I'll mention that to him!! Thank you!!
I talk with a fair number of people soon after they have been diagnosed with PD (some of the neurologist give their patients my name). For 3 years after I was diagnosed, I wanted nothing to do with the PD community; I was afraid of the worst. Meds have improved and they know now that certain exercises are particularly helpful for regaining balance and dexterity as well as overcoming depression. I feel for you. PD is a large pill to swallow (bigger than the meds I take. I should have gone on disability 2 years before I did.
What really got me interested in support groups (both local and on-line) was understanding that there was hope for a good quality of life with PD, but...I had to do my part and not just rely on the meds. That is what most of us need is hope.
I think I might understand both positions. I spent the first several years after being dx'd in some form of mourning combined with denial. Initially, I too refused to participate in any type of support structure. The more my wife or adult sons encouraged me the deeper I dug my heels in. I think , for me, my attitude changed when my family stopped pushing and shortly thereafter I discerned that in spite of that big gaping wound i felt in my chest, that I could still help other people via blogging, researching answers for myself & others, sharing info , and just being there when they needed a helping hand. I have no idea what types of rewards would motivate your hubby to partiipate more, but i find helping others tremendously beneficial to me. I now monitor this site fairly frequently and hopefully help by answering questions as I can, I also am an Ambassador for Medtronics and, believe it or not, I also run a support group right here in our littletown.
I obviously do not know your hubby at all, but I do seem to get a hint of familiarity when reading your post. Based upon that hint the only other comment I can add at this juncture would be to be patient, give him the space to get his own emotions under control, and give him all of the love and support that you can while he works at doing so. Later, when you sense that he might be open to reconsidering you might be able to further encourage him to get involved with helping others.
Hello - I was reading your concerns about your husband and wondered if my experience might help. I have had PD for over 14 years and am 51 (female). I 'coped' with my diagnosis by ploughing on regardless and didn't actually speak to anyone with parkies until about 4 years ago. Part of me may have been in denial but part of me was frightened to see what I might become like. At the time the only support group available at the time was for much older people and my GP actively discouraged me from attending. THere is now a Young Persons support group - which started locally just last year - and it is wonderful - but we understand that this is not for everyone. Similarly there was no internet support. It sounds as if your husband welcomes the information and anecdotes on this site - but is doing so vicariously through you. So whilst he is not directly interacting - he is benefitting. I wouldn't push him too hard to attend a support group - what if it is a negative experience for him - firstly he might blame you and secondly - he might never try it again - so I would suggest leaving him be until he is ready. I understand that you feel he is denying himself a good deal of support but he's dealing with things in his own way. Just think of the "I told you so" you are entitled to say if and when he does seek out support!
i happen to agree wth jinty - about the negative experience - i thibk it is enoucraging that your husband listens to the stuff you read to him and gives some reaction - so just be patient and ebncourage him to listen to yu reding stuff out and then maybe - just maybe he may wnta to participte himself - if not then you tsill have the opportunity to read to him whihc is kind of nice i think - xx
My husband doesn't want to go to the local support group either, or even know much about Parkinsons. I have to respect his wishes, although I think it is a pity. He has mildish dementia also and finds reading etc quite difficult so maybe he feels especially out of his comfort zone. I keep as informed as I can about everything but keep it to myself, apart from his family. Hope this helps.
My husband was the same way for years, but finally got him to go to hear a good speaker and afterwards we went out for a bite to eat with others we knew there. I know this is a plug for my husband's book, but he talks about this issue in his novel, "Love is Two People Talking", which is about the main character and his Parkinson's and his life after diagnosis. He does not want to go to the support group either! It tells about his feelings why, but also what happens when he finally tries it. I think this may be good for your husband to read, to see this is a universal feeling.
My husband will not go to the meeting with me either but he does go to many of the educational programs they have. We attend the yearly Symposium and this will be his 4th and my 5th. The support group meetings are in the evenings and I think that is part of the problem. By then is is tired and less able to participate. I go because the caregiver support session is vital to my wellbeing. I hope that one day he will be ready to attend with me but I will let him decide when that will be. We are currently in a research study that he initiated so there may be hope for him afterall. He is not computer savvy so he doesn't come here either. I do print up the dialogue when I find a topic that is very relevant to him.
I think men would rather do things than talk. In my PD classes at the JCC here in NYC there are more men than women in my classes (NIA, yoga, Alexander Technique, tai chi, etc.) and sometimes they really talk if the teacher (usually) asks how we're doing and tailors the class to what we're complaining about.
I go through the same with my husband. I have been trying for three years to get him to go to a support group. We finally went and he enjoyed it. He wanted to go back. That was a month ago. We haven't been back. It meets twice a week and I set the alarm, but he always has an excuse as to why he can't go. Today they had a National Parkinson's Foundation seminar. He wanted to go. As usual, when the alarm went off, he had an excuse.
You all have been so kind and informative!! I really appriciate all your answers! It made me feel so much better!! Maybe some day he will want to go and see what it will do for him. I will be more patient and still read posts to him. I would hate to have pushed him to go and then have him hate it and never hear the end to it!! LOL! It would be nice for him to go and love it and then I can say" I told you so"!! Heehee!! I would love that!!
Thank you again!! you all are great and supportive!!
My husband joined a local support group and really likes it; talking to people who have the same problem and learning about new therapies. He is not an outgoing person, but suggests going when I forget about the monthly meeting. There are wives who go without their husbands who have Parkinson's, because they have to be the ones to learn about the help. They get a lot out of it too, and meet other women to socialize with.
My husband was a stubborn, private man, but once he got into a local support group, it was the one thing he never wanted to miss. He felt good being among people like himself who all discussed their various problems with understanding.
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