On another thread peggy said this:
Until we can find another Michael J. Fox, or Andy Grove - influential people willing to stand up and fight the "accepted treatment of choice" then we are forced to be tied to a medicine bottle or face the consequences - no movement or a poor quality of life.

It got me thinking about the choices we keep having to face. Recently I had to make a choice between feeling totally phased out mentally, and being mostly continent, or having a clear head, and facing a return of bladder problems. I told one friend that right now I would prefer to have a bag than not have a brain! (She thought that was extreme, but then she has not experienced crushing apathy.) It has not quite come to that, and I have not found a solution yet, but medications do not deliver all they promise, and with PD it seems as though there are always compromises to be made, you gain something and lose something else.

In my earliest days with PD it was I either took the medication, had unexpected sleep attacks, and had greatly improved mobility, or didn't and returned to being slow, incredibly stiff, but with the ability to stay awake and alert enough to do 18 hour working days. Knowing that the latter was not sustainable, I chose to take the medication, but certainly felt like I had lost a certain sense of self, a feeling of being myself, that only rarely returns. Eventually it resulted in me not being able to continue to work. But I could walk, bend, and move........

So, I am interested in the choices that others have had to make, that you have made, and the compromises, or losses, that come along with the choice you eventually decided on.. .

Peggy is right, we do need medications/treatments/help that do not push us into making a 'least worse' choice.

What are the choices you would rather not have had to make?

Lindy

I love it when you think out loud, Lindy. For me I just want to function well enough to travel a little, talk a lot, and see my grandchildren get a bit older. I turned 59 in November, which has made me realize that 10 more years would be a gift, not a given.

I choose to not only take pills but even let scientists drill into my head and do things never done in humans before. That's a pretty radical choice. I didnt make that decision just for me. When I watch my grandchildren (two are 7 and in 1st grade, and he youngest is 5 and in preschool), a chill runs through me to think that they might get this disease, too.

I would almost be as bold to say that I would stop short of nothing t o see Parkinson's eradicated from the Earth.

Peggy

Lindy:
We are different people ..different age and personalitis so our choices are not the same. but my philosophy is to take minimum drugs and bear the illness symtoms which are ceratainly annoying but do not stop me from enjoying living in one manner or another. For example I decided to give up active work and social activities. I aim at zero stress. I chose to consider most worries to be trivial and to follow the yogi way enjoying pure existence and music. I try to accept pain and illness as normal as the healthy being. I know this is easily said but not practiced but this is the frame mind set that I use to guide me.

Imad

Peggy, I so identify with what you say about your grandchildren, I have two relatively young sons, one a teen the other in his 30's and a grandson. I don't want any of them to have this, I don't want anyone to have this. And we so need treatments that really make a difference, that stop this disease in it's tracks, which is what made me post. Sometimes your words really do resonate........

People need to know about the hard decisions we have to take, the why's and wherefores. They should not be hidden in the consultation rooms, unrecognized.

Imad, I always enjoy your posts. Thank you. Like you I have tried to keep to the minimum of medication, but have reached a point where I realize that I was very unaware when I embarked on this journey with PD, and few choices were offered me, in fact I did not actually realise that there were choices in some instances!

Last week I heard more than a few accounts of people leaving with a diagnosis they barely understood, a prescription for something they knew nothing about. If they were lucky a technical explanation of how their brain worked, and very little preparation at all for walking out into a world in which everything had shifted into a different gear.

I have a great acceptance for my own condition, but also like to explore things from the perspective that what happens to me is not in isolation, that we are all connected, and there are millions of us. For instance my drugs experience is likely to be duplicated somewhere, by someone. Not duplicated only - maybe many times over, as is yours, and everyone else who posts here.

From a compassionate point of view I cannot not think about this, or not act on it. I am so aware that I have been fortunate enough to escape some of the worse things PD can bring. You are right that pain and illness are integral to life - in my faith we say an awareness of birth, old age, sickness, and death, and our own impermanence, are the big teachers of how we can live life in a more open and fresh way. So PD means I am learning experientially, and there are definite positives to that!

Nevertheless some of the choices are hard, for me the one I have recently had to make means more than a medical difference, but whether I can function daily in the way that I need to, as a person who CAN make choices.
So I am accepting some losses, but perhaps don't like having to do that.

I recently read an article by a very bright young woman with bipolar, who said the medications for her condition were crude, that they were like cracking a nut with a hammer, you were lucky if what was inside survived intact.

Our medications are like that too, that is why people are constantly trying to get to that fine point where there is a balance between the side effects of the medication, and the symptoms of our condition. To a greater or lesser degree we will all be doing this, because PD will remind us if we don't.

We need the people who are researching and developing potential treatments to understand the urgency.

And I would still like to hear about how your choices affect your lives.....

Lindy

Lindy et al.,
This may be a bad day for me to answer to this thread, please bear with me. As PD becoming a reality and starting to interfere with my life as I know and enjoy now, all I see are compromises and not much of choices. Just as you described Lindy, we are forced to choose between brain and bladder.......or Med A that relieves pain but addictive vs Med B makes you mobile but gives you hallucinations. Which one to go for?? There are bigger. life-altering "choices" too related to work, friends and family, like
The choice of doing something I absolutely love vs finding something that I can still do.
Wondering if I can drive or keep up with my kid and her friends when I take them on a field trip...
So many day to day tasks like what would I get to eat in a public place, whether to drive or not in the night, These were not even an issue before, now these are my choices. I wish I didnt have to make these choices.. however big or small they are...

"If I had a choice, I too would get rid of PD from this world.

If I were calmer, my responses would have been different except the last sentence.

Thanks
Girija





I

Do you know the difference between choice and chose????

Choice is a decision you make.

chose are something you wear on your feet

Girija,
I too had to decide that I wouldn't drive on my children's field trips nor accompany them. In some ways I was relieved because I don't like driving especially with a car full of children chatting with loud voices. So I used it (PD ) as an excuse at that time because I was afraid of the responsibility given the possibility of sleep attacks. Now I don't have field trips to deal with but I'm being very selective and cautious in my driving situations.

I think many of our choices or decisions on medicine, types and treatments are not actual choices but the better of two (or more ) evils. And add to that the fact that we don't know the long-term effects of almost any of these chemicals when added to our brain soup, we are not able to choose but rather throw in our emotional spice and proceed.

I also have found that I re-visit and revise my "choices" because the factors change over time. I started on Requip, couldn't stand the sleepiness,moved to Mirapex, my hair fell out, returned to Requip with Amantadine and it worked. But my neurologist didn't even suggest the Requip return scenario because he thought I'd reject it.

The choices I most resent these days are when I know I need to "choose" to not do something because I'm already too tired. Friday, I chose to skip the Flower Show. It was the right decision but I hate to think (and act) as if I have limitations.

This topic made me really think about whether or not I feel like I can choose. Guess my experiences haven't had the equal (?) discomfort of brain vs. bladder. Thanks for starting this, Lindy and all who have followed, too.
Katherine

One choice I have made is to use a wheel chair when my grandchildren visit because they wear me out. The baby is 18 mos. and likes to be held, and it is hard for me to carry him. With the wheel chair, he can sit in my lap and I can wheel around my kitchen and do things. He likes it too. Sometimes his 5 year old sister pushes me.

I hope my insurance lets me keep the wheel chair which is only rented right now. It was prescribed in January when I injured my good foot from overuse dragging my left foot while unpacking when we moved to Florida.

My doctor has suggested possibly increasing my Stalevo dose, but I think using the wheel chair when I need it is a better choice than taking more meds every day.

Thanks for the insight and personal input to Lindy's thread. This is what these forums are all about. I have heard some professionals say that "patient forums are just a place for patients to run down the professional care they are receiving and to exchange often inaccurate information." Then there are those professionals who appreciate what they are really for; i.e. a place to share information and experiences the doctors and nurses don't have time to share, and the forums provide a place to "unload."

Regarding the "unload" reason for forums, it's like a yard sale - one person's "junk" might be another person's "treasure." What this means is there are times when one person's unloading of feelings or experiences might be exactly what is happening to another. Your sharing might lead the way toward an answer to a serious problem another is having, which might have otherwise turned sour or even lethal. Or your response might be the tidbit of information your doctor or nurse didn't have time to explain. If the professionals would realize how much we (forum participants who take their input seriously) are helping, they'd be sending us thank you notes constantly.

I am a person who wants to see the face of the thief who has invaded my personal space; that's a perfect metaphor for PD - a thief. A thief takes away something valuable from another without their permission. I want to know what Parkinson's is going to steal from me next - and I don't want that information sugar-coated. But in defense of those who do not choose to look at such frank information being shared; i.e. those who would rather not hear about the bad side of Parkinson's, I try to keep my responses on the positive side. However, there are times when there just isn't anything good to say about PD, the thief.

Thanks for further discussion on this important topic, Lindy. It's shower time for me - but as Schwarz..... (oh, I can never spell his name!) - as the famous actor turned California governor woulld say, "I'll be back!"

Peg