Good Morning Friends : I will try …
Good Morning Friends : I will try and update. Every time I start something happens. First we were finally able to …
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Hi Friends ! So here's the deal !! When we moved here I was very excited that there was a
PD support group here in town. They took the summer off so today was the first time we were
able to attend.
As I have stated before my hubby has no interaction with other PD patients. He has never talked to one or been able to exchange ideas.
I was hoping for that today. When we got there approx. 20 people came in and sat at various tables. We did introduce ourselves at our table. The majority of the people there were new.
There was a lady that had been diagnosed 3 yrs ago. No visable signs of any kind. There was a gentleman that had PD for 15 yrs but very little tremor. You really had to notice and look to be aware of his tremors. A gentleman 42 that had Young Onset PD.
There was a speaker that presented a program for vocal & swallowing problems.
After the speaker was finished everyone got up and left. No interaction at all. They did have some handouts to pick up. I guess what I need to know is has anyone been to other support groups? Is this normal? I am asumming that they are all different. I hate to start complaining right off the bat but really felt let down. I was expecting some real interaction for him.
I have DS and all of my friends and discsussion groups and I always feel like I have gotten good advice and support.
Hubby was really having difficulty today. Tremors and Dykenesia really bad. It was all I could
do to sit and watch him and his difficulty. Very uncomfortable.
Would I be really taking over if I suggest that we all wear name tags and give some information about ourselves and how long we have been involved with PD?
Sorry, I guess I am having a bad day. I can't stop crying and just feeling owverwhelmed by the intensity of the symtoms that never seem to be gone anymore.
Thanks for listening. XOXO pat
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Pat,
My heart goes out to you! I would give you a big hug and cry with you if we were in the same room. I understand completely how you can feel so overwhelmed.
I am sorry to say that I have not been able to attend any support groups meetings with my PD husband (they meet during the day and I work 8 to 5). What I have done though is contact the support group leader and ask them to recommend a "buddy"-another caregiver, one you can get to know-perhaps even outside of the meetings. I did this and I can't tell you how much it helped me to persoanlly meet someone who is in my same shoes. My "buddy" and her husband have since moved away to live closer to their children. I really miss her and need to find a new PD buddy/friend.
On-line friends help tremendously, we couldn't do without them, but have someone to personally talk to is a true blessing.
Hope this helps!
Blessings & prayers!
Sherri
mytngenes
Thanks for the suggestion. I will definitely call the two ladies that are in charge
and see if they might make a suggestion. I know from talking to them on
the phone that both of their husbands have passed away. Hope
you have a great night. XOXO pat
firelady
Sherri's idea sounds great! I think very often people are shy, overwhelmed, even intimidated by the presence of others, especially new faces. Maybe you need to start up the conversation first? Often people are receptive once someone else gets the ball rolling. People especially thjose with diseases like PD often fear others may reject them because they have tremors or other issues. Even though this is a support group with others who have PD sometimes people just don't know how to ltet down and relate. Does that make any sense? Maybe it would be a good idea to if everyone had to stand up, give their name and say how long they have suffered with PD? Just a thought. I know by your caring nature that you will get theses folks to become friendly and intract in no time. When is the next meeting, can't wait to hear what happens! love, marcia
bizemomm
Hi Marcia, I appreciate your feedback. The next meeting is the 1st Thursday of October. Yes, by the time that meeting gets here I will have many ideas. LOL
I just don't want to take it over but I just feel we need more interaction. Name tags and letting everyone introduce themselves would at least be a way to break the ice. Many thanks for your response. XOXO pat
firelady
I never got the chance to attend any support groups for my Dad. Even found DS too late to help me but I'm so sorry you had a bad experience tonite. Name tags definitely might help and perhaps intros yes by all means. Then perhaps the symptoms they have. Then go onto how they're dealing w/it and spouses. Well thinking of you. Sharon/TX
REDROSECOWGIRL
Is the speaker the moderator, too? Is there a moerator or group leader? Perhaps you could speak to whoever is in charge and explain what you were hoping to get from the meeting.
If the moderator hasn't "got it together", would you have the time to do it?
LostLadyLen
Pat, I am sorry I feel so terrible that you have been there for me and I have not been here for you. I think you had a good idea about name tags. It just makes since to me that everyone would maybe open up and start conversing if they saw people really had names. Good place to start.
Hugs and prayers to yo my friend.
Nancy
navaeh
I knew when I was "complaining " that someone would suggest that I take charge. LOL No the speaker was introduced by a lady that I have talked to on the phone. There are two of them and they seem to have been the ones to start this group.But it was not a "meeting " that had anyone in charge. I will probably call her and ask about some kind of introduction for everyone. I don't mean to complain I just felt so let down after the meeting. I guess I had put too much hope in getting hubby someone to talk to. I really am not good at moderating. I will be happy to help and I will tell her that when I talk to her. Thanks for your input and I hope you have a great day.
firelady
What a bummer, I am wishing for a group in this area, but if they are duds like at yours maybe I am better off just coming here. I know the feeling of having high hopes for your husband to get involved. It's hard to watch him go into himself. You are so giving you will find away. Just be yourself. Sass.
Sassafras
Thinking of you and hope you do talk to leaders of the meeting. They will be greatful for you input I am sure. Hugs 607Beth
607Beth
Hi there, I'm so sorry the meeting wasn't all you hoped for, I think the name badges are a great idea,I think you should definitely mention it to the leaders,and you know, if they um and aagh about it well then, you and your husband wear them and I bet you find lots of the other group members would comment positiely about it and it would take off that way. After all the love and support you have given me I just wish I could be there to help you now,but I do assure you of my love and my prayers for you both always. Hazelxxx
hazelsmith
Hi Firelady. My message board said I had a message from you, but I can't find it. I'm still learning to navigate this site. I have only been to one support group, one time, the group fell apart after that. I had an experience similar to yours. The only one who said much was the speaker. She was a nurse, the caregiver for her father. I learned so much that day, more than my doctor told me. I finally found another group in an adjoining town and will attend this month. Name tags would be wonderful, knowing everyone's name should go a long way to making friends. I am so looking forward to this meeting. I'll let you know how it comes out.
RedheadMona, TX
RedheadMona
You are a truely fine and compassionate, loving woman. Thank you for being my friend.
WJGonza