[Ronhutton]

Peggy, (Pegleg)
So sorry to hear of your problems, but I know you will overcome them with your faith and attitude. I don't have the faith but although I am deteriorating like all of us, after 18 years of PD, I try to maintain a positive attitude and enjoy life.
In any case I reach the average age of expectation of life this year of 73 (for males). so I don't worry too much about PD.!!! Every day is a bonus, in 2 weeks I will be on holiday in Venice, whoopee!! I feel I could have much worse illnesses.
I hope you pick up your weight soon. Have plenty of Mars bars!
Anyway, I am only 120 pounds so I should take my own advice!!
Very best wishes
Ron

[pegleg]

Thanks, Steve and Ron, for your comments. Let me set the record straight. Although much of my present condition can be attributed to PD, the spinal degeneration is a lot to blame. Having poor posture and gait due to having PD sure doesn't help matters! I can take a Hydrocodone pill and in 30 min. to an hour be jumping through flaming hoops! Pain and PD just don't mix!

I need to cut back on meds, also. Heck, I may even break down and be evaluated for DBS. The problem is I refuse to have it done "just anywhere," and that wouldd cause lots of logistical problems. I also think the duodopa therapy shows promise (approved in Europe for about 9 years - where dopamine gel is pumped into the gut). Then there's the GDNF issue - we let a good thing slip through our fingers. Let's grab it by the tail this time.

Ron - keep traveling. You have one heck of a great carepartner - hang onto her!
Peg

[jcitron]

Thank you, Peg for the support. Those inspirational quotes are going on my fridge so I can see them every time I open it. It's not that I haven't given up yet. I can see the big differences from before. I know I shouldn't look to the past, how can I not do that.

John

Originally Posted by pegleg

John
I just read what you said:
Sadly I have to admit that I'm not as energetic or as pain-free as I was three years ago. I ache miserablely most of the time, and my coordination isn't as good as it was. This aspect is killing my mentally as well. I find that this whole evil thing we call PD eats at the soul as we watch our abilities wither away. It's like saltwater being poured on a statue. As the water trickles down, it eats through the stone structure so there's nothing left in the end.

Man, can I relate to your pain and enenrgy levels. I just wanted to tell you that your analogy is on the mark, except for the last few words . . . "there's nothing left in the end." My faith has sustained me - my hope that we go on to another place and get new bodies and are pain-free (dyskinesia-free!) and there is no sadness.

Even if some of you don't believe in an afterlife, remember that our attiude is all we have when things are looking down. Unlike MJ Fox, I am NOT "always looking up." But people such as the ones in this forum remind me that I am not in the worst situation, and I am the only one that can change the way I think. And hey, I'm not scolding anyone about negativism. I have had battles with depression for years. And I have come to learn that I cannot point my finger at my alcoholic father for my situation,, nor for the things that happen to me (like losing a career I loved to this #@!$% disease).

And even if you don't subscribe to the Christian "attitude," it's an attempt to live thinking positively. So here are a few quotes just to hopefully get anyone reading in the right frame of mind (I sometimes put them on 3X5" cards where I know I'll look frequently: on the mirror over my sink or on the sunvisor of my car where I can see it every time I look in my rear-view mirror (oh yeah, and on the refrigerator door! lol)

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. ~ Helen Keller

What lies behind us and what lies before us are tiny matters compared to what lies within us. ~Walt Emerson

Life is 10% of what happens to me and 90% of how I react to it. ~ John Maxwell
If you don't like something change it; if you can't change it, change the way you think about it. ~Mary Engelbreit

The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people. ~Ralph Waldo Emerson

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey

To be upset over what you don't have is to waste what you do have. ~Ken S. Keyes, Jr., Handbook to Higher Consciousness

The thing always happens that you really believe in; and the belief in a thing makes it happen. ~Frank Lloyd Wright

(I hope I didn't preach too much - I just empathize with how you guys are feeling).
Peggy

[gaykir]

I’ve been reading this thread with great interest & sadness. Some of you will remember me and others will not. I was a Caregiver for my husband Kevin for many years. In retrospect, we know that he had Parkinson’s for as long as I knew him - over 25 years. Unfortunately or fortunately, depending on how one looks at it, he was not diagnosed until 2000. At that time we lived in Chicago and at 52 we knew no one with Parkinson’s. There was no support, no one to talk to. All we had was the internet. We found Brain Talk 2. It was a blessing for us both.

In the beginning Kevin participated personally in the site but over time he relied on me to post for him. When we moved to Texas and found a great support group but most of these folks were much older and few were young enough to be computer savvy. They began to depend on us to share tricks & tips and information we gleaned from you & this site.

When the big crash happened it was dreadful! That is when we realized how important the site and all you folks who post on it are. Fortunately we found this new site with many of you old folks and we also found the new BrainTalk site but it was never as active as this one so over time we just stopped reading it. As with any site, you learn to accept folks and their little quirks, you can “read” the despair or anger at times and you understand because they are frequently discussing things that you yourself have felt. What some of you may not think about is that some folks are way ahead on the path and as things progress they post less & less frequently or they post symptoms and issues that you are not yet experiencing.

This board is so important and probably more important than any of us will ever know. If we live in big cities or heavily populated areas we have access to so much support but I will never forget all those folks & those caregivers suffering with this disease in rural areas or living small trailers with just a cat somewhere all alone (i.e.Fred – Taxi). All they have is the internet.

There is an ebb and flow to the board but the sharing of information, feelings and friendship is vital. Those on the board who are tech savvy and aggressive about discussing issues should never forget that there are countless folks who are part of this board and read it faithfully but never post…..

I think this will be my last post. Since Kevin died last year, I find it too painful to read the board and see how some of you old friends are progressing. This board has a profound effect and is vital to Parkie and caregivers alike! I thank God that we had you all and this board. I can’t imagine surviving the journey without you.

[Jaye]

I'm sure no one has written a finer "last" post than this one. Those of us who have faithful and understanding partners know that our beloved other will have to deal with contingencies they never dreamed of, never even had nightmares of. Yet some of them offer their strength and capabilities freely and meet each new situation with amazing amounts of kindness, humor and love, as you have. Believe me when I say that you have been a caregiver to us all as you walked beside us these years, looking out for Kevin above and beyond the call of duty.

I wish you the very best in finding your own new "normal."

Jaye