Support Groups
 

I attended our local PD Support Group meeting this afternoon. We discussed little shortcuts that each of us has found that makes life easier for us. We all learned a lot.

How many of you have local support groups and how many attend on a regular basis.

I find I return from each meeting with one of the following emotions.

1. Severely down because someone has regressed so much so quickly.
2. I feel bad because I am doing so well and I see how difficult it is for so many of the others to cope with this disease.
3. I am elated that we were able to share and learn so much from each other.

I was lucky today and come home with #3 emotions.

for you - a poem by emily dickinson
 

Hey Dale,

When I was first diagnosed and looked for a support group, I had all the normal fears. I didn't want to see people who were more progressed and depressed! And that's exactly what I saw at my first meeting. It was not good.

Fortunately I decided to make the trip to Washington, DC for the NPF young-onset conference. While I saw many who were struggling, I also met many who truly inspired me.

Recently, I started a young-onset group here in my area because one didn't exist. We met today and my heart was saddened as we had a new member who was an emotional wreck and was really struggling. You feel helpless because you want to "fix" that person but realize they have to deal with their situation in their own way. I just hope myself and the group were a positive enough experience for this person so they can move forward with less struggle in their life.

I'm all for support groups. It's just a matter of finding the right fit and sometimes that takes time and effort. In the end though, I think it's truly worth it. You're always going to have some heavy emotions to deal with but at least with a support group of your fellow PD peers, you're surrounded by those that truly understand. In my mind, or what's left of it anyway, that's better than being isolated and alone. :)

Todd
PDTalks.com

Dale, I too have come away from meetings with similar feelings. As the leader of a support group, month after month, I would see the decline too. A couple of months ago I had my eyes opened to the fact that I had been assuming that a member was doing very poorly. From time to time, we didn't have a speaker, and when this would happen we would have round table discussion, which everyone enjoys doing. During this most recent round table, we got on the subject of what every one does with their time.

Here is a excerpt from a posting I made to another message board a couple of months back.

I have 16 PWPs in my NYS support group. One is 52, and in my learned 16-years-with-PD opinion, doing quite well. But he chooses to have his wife drop him off at this parents home weekdays so that he can sit in a chair all day and have his mom take care of him. He has even stopped coming to meeting, so I formed a "phone buddy" group that is calling him "just to chat". [NOTE of today: He had given up ALL outside activities and his hobby. The phone buddy system seems to be helping.]

The second is 74. His wife always comes with him to the meetings. He has been in our group since last year, when the group began. He is very quiet, very stooped, and very off most of the time. I have always been sad for him UNTIL recently. When we don't have a speaker we have general discussion, which everyone seems to enjoy more. Recently I have discovered that this 74 year old man, whom I have felt so sad for, 1) tutors students, 2) does tax returns during tax season, 3) takes a daily walk with his wife along their road, and 4) volunteers at a community center.

Neither of these men is right or wrong in what they are doing. It is all relative...right? But, it is clear to me that one let go of "the familiar", while the other grieves for it and refuses to let go.

My signature in this board had included this quote, which is where "the familiar" comes from: Courage is the power to let go of the familiar...Raymond Lindquist

The single event re-opened my eyes to the fact that it doesn't matter how poorly one my appear to be, it is what we do with our time that matters the most. Enjoyment of life is a matter of personal perspective.

I left this at the end of the posting.

I will stop now and leave with two more of my favorite quotes:

One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered. ~~ Michael J. Fox, in "Saving Milly" by Morton Kondrake

I don't want to get to the end of my life and find that I have just lived the length of it. I want to have lived the width of it as well. ~~ Diane Ackerman

Attitude May Not Be Everything...
 

... but in dealing with PD, it counts for a whole lot. I loved the MJF quote you closed with, Carolyn! It eloquently stated what I was trying to say in a post I recently made on Braintalk. The quote Carolyn used was:

"One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered. ~~ Michael J. Fox, in "Saving Milly" by Morton Kondrake"

In a topic about "Mental Capabilities" posted on BrainTalk, I responded with my experiences with the reduction in short term memory and frequently struggling to remember the word I want to say. In that post I wrote: "Nothing I know of helps with the word search though. Stressful situations tend to make this worse. ... I often struggle to find a familiar word like "fortunate", instead describing the word I want like "Oh yes, we've been very...very...you know, like lucky?" It is frustating and can be embarrassing, but if you're a nice, likable person, people tend to overlook your struggle or chime in with the word (ala the Jeopardy game show!). Either way, they don't think less of you.

I didn't word it very well in my original post, but what the underlined section really means is people tend to follow our lead when we're having PD problems. If I don't get upset and make a big deal out of forgetting a few words, others don't see it as a big issue either. It's our own attitudes that are reflected in how others perceive us.

Excellent thread. Thank you all.

Valor is stability, not of legs and arms, but of courage and the soul. ~Michel de Montaigne

Courage is not the absence of fear, but rather the judgement that something else is more important than fear. ~Ambrose Redmoon

Every man has his own courage, and is betrayed because he seeks in himself the courage of other persons. ~Ralph Waldo Emerson

From Answers.com:

Raymond Irving Lindquist

Best known for the quote "courage is the power to let go of the familiar," Raymond Lindquist was the pastor at the Hollywood Presbyterian Church in Hollywood, California for many years. The author of the book Notes for Living (Philadelphia: Lippincott, 1968), Dr. Lindquist is said to have had the following about his profession: "Every great preacher had better be manic-depressive. He or she needs to be high at 11:00 on Sunday morning, preaching with all the confidence of divine authority. And that preacher had better be low by 2:00 on Sunday afternoon, or he will be impossible for his wife to live with the rest of the week."

http://www.answers.com/topic/raymond-irving-lindquist

Hope no ones see this as preaching. I just feel strongly about the difference between sitting down and continuing standing up and move forward.

Clognition...we have probably all heard that word, which our own GregW coined a couple of years ago. We all suffer from it. It is the primary reason I quit working six...yikes...years ago...can't believe it has been that long. (Carey writes about it on her website www.clognition.com)

Searching for words it one of the hardest issues I personally deal with. I am over being embarrassed about it, or maybe it is just that the people who know me best at just tolerant of me. Not just the saying of the word I want to use, but the spelling of the word I want to us. Here at the computer, one of the tools I have begun to employ is www.dictionary.com. I use Firefox as my browser, which has a Bookmark Toolbox Folder...meaning it allows you to have a bar across the top of your browser for the bookmarks I use the most; e.g. BT2. I have dictionary.com there.

When I am strugging with a word...the word or the spelling...I go there and type in what my brain is thinking. Sometimes it takes me a while to find the word or the spelling, but it has been very helpful.

Familiar...the lose of...this is also one of the hardest for most of us to deal with. The lose of some of my familiars...normal gait...lose of job...lose of liveable single household income...lose of smooth penmanship...lose of simply standing up from a chair without thinking about it first...lose of turning over in bed without thinking about it first...lose of feels refreshed after hours of sleeping...lose of an empty medicine chest...lose of going through a day without medication...lose of not thinking about swallowing...lose of going up and down stairs without thinking about it first...lose of walking across uneven ground without thinking about it first and plotting a good path...I could go on.

Another quote loosely relative to the "familar" quote is: "When you come to a fork in the road, take it." ~ Yogi Berra

We all came to a fork in the road when we were diagnosed...right? We could choose to continue along the path we came from, which means angrily battling to keep what WAS familiar...like my 52 year old friend...eventually giving up and sitting down, permanently.

Or, we can take the new path at the fork in the road, like me and my 74 yr old friend) and do the best we can to continue to live a full life, incorporating our ever changing limitations into our life...sort of a partnership with an irritating friend who you just can't shake loose.

See my signature quote below...

And, short term memory. Here is yet another one we can all ID with. I haven't found a good solution for this one. Yep...write it down. But, what happens when I forget what to write down by the time I get to the notepad :confused:

I think that if I hear another person say to me...
"Oh, we all have that problem."
I think I will have the proverbial scream!!

It is not the same!

I am very weary of saying "sorry, I forgot" because I didn't write a simple thing like "buy bread" on a piece of paper and take it with me to the store!

So, I grin and bear it :) :D :) :D
Another irritating partnership that simply will not go away and leave me alone :) :D :) :D

support group
 

Hey Dale,

I don't belong to a support group. I don't believe there is one in my small town. BUT, then again I haven't "come out of the closet" (so to speak) yet.
I have early onset PD. I don't know if I'd ever go to a support group, though. I consider this forum to be my support group.

I can relate to you about getting down when you see people digressing w/PD. My mother is is 78 now (and in the late stages of PD) lives with us. I have to help her a lot and makes very sad. I work all day and then come home to tend to her every evening and weekend.

It's enough to make a person suicidal!!!!!!:eek:

BUT, God is my strength. An ever present help in times of trouble. I'm praying that He will heal me. He is the love of my life, my refuge and strong tower. He is a BIG God and can do BIG things!

God bless you, Dale! How's Alaska???

Maryfrances

Thanks everyone
 

I’d like to thank all who responded to my message. The direction wasn’t where I thought it would go but was great.

CTenaLouise - thank you for the beautiful quote of the poem. You must known I am a sucker for poetry!

Todd – I admire you for the work you’ve already done at your age. I signed up to be Alaska’s representative for an Early Onset registry back in the late 80’s. I received several calls and talked for a long time with one guy. That was in the days when we had about a three second delay in the voices going back and forth to the “Lower 48”. It was difficult conversation but I think I helped him a lot. Keep up the great work!!

Carolyn – I have been the leader of our support group from time to time. We’ve had one leader and his wife both die while leading the group. Another lost his wife and moved to Washington State. We have had mostly elderly retired leaders that could devote more time to it. My kids are all gone now but I want to work for another year or two and would like to wait until then to lead it full time.

Mary Francis – The forums do a very good job of providing information but it is nice to have face-to-face contacts too. My Dad was just diagnosed with PD. My folks live in a retirement home in Nebraska so don’t get to see them too often. I too get my strength from God. Would never have made it without Him. Alaska has been unseasonably warm. No snow yet and only two days of frost. This weekend a marshy area close to town had about 30 trumpeter swans resting before their flight south. I wanted to go out after our meeting yesterday and take some pictures but a lady needed a ride home so took her. I thought as she was getting out that she probably would have like to go too but we were at the opposite end of town and with the cost of gas didn’t want to drive 20 more miles.