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firelady's Journal

Journal Entry for September 4, 2008 Mood

Thursday, September 4, 2008

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

UPDATED GOALS

Memory book for pat / jim

Progress 60%

Encouragements: 0

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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

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Journal Entry for August 28, 2008 Mood

Thursday, August 28, 2008 | A Rambling story

I really don't know what to call this entry. Reflections I guess.

We went to pick up our grandson from school today. We were sitting in line waiting and the bus came and parked to pick up students. A van pulled up and the mom got out and opened the back.

The aiide came out with the little girl. She was in a wheel chair and could not hold herself up.

As I watched the mom get the young girl into the van I was struck by what has to be a full time job for any family. We have a son, DIL and 2 grandsons that are doing well and in good health. My hubby and I have health problems but nothing like a young child that is totally helpless. Sometimes we get so caught up in our own problems that we miss the BIG picture. There is always someone worse off than you are. My revelation for today is that if I get up and have a bad day then I will try and remember that little girl that will never run, skip or jump. She will not climb a tree or dive into a swimming pool, she cannot play basketball, tennis, golf, or any other sport. When she gets married she will not walk down the aisle or dance the first dance with her new husband. Sorry if I am on a soap box. Don't mean to be. I just felt the pain of this young girl and the parents that are living with this day in and day out. We are all working through the pain of our disease.

We all have our own specail demons to conquer in our lives. I will not forget that we are blessed in many ways and have much to be thankful for.

I hope everyone has a wonderful night and a great tomorrow. Blessings to all. XOXO pat

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Thank you for sharing this. I know how you feel... You are right. We have much to be thankful for.

LostLadyLen
Blessed be your name, when I'm found in the desert place, when I walk through the wilderness, blessed be your name (from Matt Redman's song.) We get so wrapped up in ourselves don't we? Good reminder.

saved1
Your journal was inspirational today my friend. You are so right about others being worse off than we are. My mother used to say that if we had the chance to swap problems with our neighbor's we would choose to keep our own. Thank you for sharing your discovery today! Have a good weekend and thank you for sending me good wishes on my absence since surgery. love, marcia

bizemomm
Thank you for sharing that story. At times we tend to narrow our focus on ourselves and need to be reminded that there are always others whose situation is much worse than ours. Thanks for helping me to refocus.

mytngenes
that was a great story, made me rethink things, thanks!

sarahhopes
yes your Journal is very inspirational and so true .. we do stop to seldom to thank God for all of our Blessings.. thank you for posting the reminder...Love Simone

OmiMone

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Journal Entry for August 25, 2008 Mood

Monday, August 25, 2008 | A General Update story

Hi Friends ! Just a note to let you know what is happening in our life.

There were problems with the Effexor prescription and after a couple of days the doctor gave us

some Lexapro to start. We had a pretty good weekend and really bad spells. We go back in 2 months to discuss the new meds. Today Hubby went to the Urologist. Everything is in order and the only problem is the incontinance. There is improvement the last couple of days so hopefully it might work out. On my doctor homefront. I went to Rheumatologist and everything is working.

Taking me off Methotrexate has taken away the liver problems. Good News!

So for the first time in 5 - 6 months we don't have doctors appointment for awhile. Hooray !!!

Still working of our journal and I think I will reach my goal. I appreciate you all and really kind of amazed that an internet support group can mean so much in our everyday lives. There are so many special people here and the caring just comes through. Blessings to you all.

UPDATED GOALS

Memory book for pat / jim

Progress 50%

Encouragements: 0

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I've know others who use Lexapro and thought it worked well. You know it takes a month or so to work? You sound good....I'm still waiting to see if the kids are coming for Labor Day. If anything develops I'll call.
Love....

sam03
I hope with all the changes in medication you both will start to feel better. hugs

gghcgail
i'm on lexapro. have took it for a while. i pray it works for hubby. things will work out. after 8 years. the doctor has got the right combination of meds. i still have problems but we have a diease we can't be competly well. i do well. i just have to deal with some issues. i wish both of you the best.xoxoxo

dede
I'm so glad you are both doing well! I've been on Lexapro before, it worked quite well for me, I pray it works well for your hub too. My prayers are with you that you continue to have many more good days ahead. Keep strong! Many prayers, ((hugs)) and LOLove, Connie

CDouglas
Thanks to all of you for your comments. I appreciate you all so much. Hope you have a wonderful day.XOXO pat

firelady