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Topic Staging of a disease...please comment... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.06.17 21:59
Please allow me a moment for a personal reflection...Seven years ago, I was told I had uterine cancer and would have three surgeries to hopefully get it all...I did...During one of these surgeries, my cancer was "staged"; however, I was given the choice of knowing or not. After much soul searching, I opted to not know, and to this day, I do not know. Call it whatever you want, even denial, if you please. I just felt, and still do, that it was not of the greatest importance to live my life with that information. I was told what I needed to do, to schedule and meet regular appointments, mammograms, tests, etc. I still do.

Now, jump forward to this battle with PD...we have done the same...we keep going on without "looking for" or "expecting" a new stage is upon us.

Is this the best way to face a lifetime with PD? Is it important to know what "stage" a PWP is in? The more we read and the more we research, each PWP has different reactions to treatment, so it seems we cannot truly predict what is going to occur at different "stages". Is that true or do you see our approach as denial?

In that vein, we KNOW the reality of PD, we face the changes head on, and we have faced the inevitable through his Mom's struggles. We do not ignore what is going to happen, but have chosen to prepare DNAs, health care PofAs, have wills in place, and on and husband is "The Great Preparer", as our grown children call him. He wants to have plans in place, but he wants to keep plugging along and live his life without him, being prepared makes him feel in control, and, therefore, less fearful.

"It is what is is, Jane." What do YOU think?

I appreciate ll of your comments. TIA. Jane

By lilflower On 2013.06.17 22:57
In some ways you are right there are stages, but it is what it is , everyone is different my husband keeps fighting he knows meds only do so much but he chooses not to be negative and he has every right to feel that way but if he lets it the fear and the reality will take away from the precious time we have together. Yes we are scared we are not in denial we just choose to give PD all the fight we can.

By LOHENGR1N On 2013.06.18 00:10
Jane,Jane,Jane, You ask a hard question and I guess like the disease itself the answer depends upon the individual case. Many want to know stages, and many then want to know the duration of each stage. Like a countdown to the end. Many say no we just want to know what to expect next and when to expect it. To me this seems bleak, many spend time left looking for "signs" of the next stage. Question online is this stage such n such?

Of course this is my own personal view, (and I'm not singling out any individual or inferring to anyone, this is a hard road and we travel and cope according to our own abilities). I've always said to heck with the stages I could be a later stage 5 or being struck by lightening for all I know or end stage for being struck by a truck. I don't dwell on it. Or Jane and I can't believe I'm doing this! To paraphrase MJF Parkinson's disease is like standing in the middle of the road and knowing a bus is coming and will hit you. You don't know when it will come but you know it is on it's way and you know it will hit you. What do you do just stand waiting counting down the time?

......been an hour it's getting closer.....been a day it is drawing nearer....... No, I don't believe that is the way to go and MJF and I agree on that. (ouch that hurt typing that one lol). We can sit and wait or We can do something, anything to make our time more enjoyable. I referred before to My seeing life as divided between the terminally ill and terminally well. Being terminally ill we know our time is limited and we should make the best of what we have so Jane if not worrying about stages or not looking for something that may point to progression is denial there are quite a few of Us with it. I myself don't view this as denial I know what is coming, I know I'm progressing, I know I'm fighting a losing fight. But to me, To dwell upon stages, to keep seeking signs of progression, to me this is denial, it deny's me time to help others, help myself and enjoy the time I have left. It deny's me finding what happiness I can find day to day or minute to minute and it deny's me in my ability to keep fighting this damn disease.

Well you asked my thoughts so there they are for better or worse some will agree some will disagree and that's okay we're all different. Take care, best of luck and hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By Threadhead On 2013.06.18 08:12

By Freespirit On 2013.06.18 08:34
Excellent hearing different points of view.

Thank you to everyone who posted on this.

By parkinit On 2013.06.18 09:20
Jane -

Stages are really a very loose way of determining where you are in the PD battle, but as we all know, these stages may last many years, or perhaps even months for some, so they are definitely not a determination of time in each stage. So, we won't even go there. Yet, it helps me to know what lies ahead. It helps me to plan and get a hospital bed now to help us with back issues when we are having to help him in and out of bed. It helps me to order a Hoyer lift as I see he is unable to support his legs more and more frequently during transfers.

As I told one of my PWP's dear friends yesterday, I just try to stay ahead of things so I can be prepared for the next stage and not be blindsided with a fall because he cannot support his weight as I'm trying to transfer him alone. I order a hospital bed so I can raise and lower him so I will continue to be able to care for him as I have scoliosis and prone to back spasms and pain myself.

So reading and preparing ourselves for what we must face is sobering, sad, frustrating, yet I feel imperative to our survival. We must preserve ourselves now for what lies ahead in the future and by knowing what lies ahead we can take the best possible care of our PWPs.

By Freespirit On 2013.06.18 16:06
I personally use the stages (Hoen and Yahr) to give me an outline of what to expect from a physical standpoint; however, what hit me hard was realizing that the emotional side of PD is not covered there, so I was quite blind-sided by that.

I find the emotional changes in PD to be more upsetting than the physical (which are bad enough) changes that take place as this disease progresses. No doctor prepared me for the emotional changes. I had to dig to find info on it as well as coming here and listening to all of you and your experiences.

By jcoff012 On 2013.06.18 17:13
Wonderful insights, everyone! We appreciate them all. PD truly IS a personal matter, but it is rewarding and touching to learn how others face the realities of it.

I, too, agree that for a caregiver, the emotional side of PD seems to be the worst part. No one can prepare you for all that lies ahead after dx. In some ways, that may be a good thing. I know that I watch Carl at quiet times and I KNOW he is remembering sitting with his Mom in the hospital. He said she was writhing in pain, contorted...he sees his future self, I know.

To anyone reading this...first, thank you for posting...we all appreciate the insights. To those who are struggling, looking for answers to the unknown...I wrote to the MJFox Foundation and to the National PD Foundation and told them we NEED literature, even informational meetings, on this very topic...who knows if an answer will come...but, unless we post here and let the powers that be know our concerns, we will not get answers.

Much love to all, thank you again for responding, and if you are reading this and have yet to respond, please do...we all value your opinion...never know to whom you are speaking...and HELPING! Jane

By carman96 On 2013.06.19 18:58
I don't ever think about stages. I know it is a progressive disease but who knows how long each stage will last?? As some wise person said "Hope for the best but prepare for the worst." Sounds like that's what we are all doing.
AL you are so funny about agreeing with MJF!! I guess hell must have frozen over!

By LOHENGR1N On 2013.06.20 00:00
Ah, carman96 you felt my pain?!?! With all the wacky weather we're having Country and World wide Yes hell must have frozen over. So I guess it was safe to write that.........not less painful but safe ;)

By olpilot On 2013.06.20 01:02
I like the bus metaphor. I don't really care about a label as to where I'm at I spent way too much time worrying about what it was before my diagnosis, now I just want to do as much as I can while I can. Like I.told my fb friends, I'm to busy right now, j don't have time for Parkinson's. I know I'm slowing down, but it's hard for the bus to hit a moving target. I quit doing what I must, driving because of worry about the consequences, but I'll do what I can as long as I can.I think labels are best on bottles.

By seawench On 2013.06.22 10:10
I think the only thing we can truly say is if we are at the begining of the journey with PD (and the other movement disorders) or if we are in the later stages. All of us know that life with PD is very different in each those places.

We can't ignore that there is a progression from walking to bedridden and everything in between.However the time table is not written in stone and there are certainly those who can rally or improve with different treatments, meds or anything else that gives them a boost.

For me I do want to know what the collective wisdom says about possible stages, the unknown is intolerable to me. I'm not going to follow the script if I can ad lib or improvise but I'm much better off if I have a clue regarding the obstacles.

For instance my hubby has MSA, and I do not disagree with this DX, in fact he's almost textbook and it makes more sense than the PD dx. With MSA the prognosis is 5-9 or 9-12 years depending who you are talking to. But it's not about the "Stages" being tied to number of years so much as those are the odds given the known life cycles of the currently identified MSA population. My hubby is an unknown because he is still with us.

The "Stages" are like a topography map, it gives me a look at the lay of the land but it doesn't tell me the path I have to travel, I can choose how to cross the landscape, there may be roads and trails marked out, but I am not bound by them. I can (and will) forge my own path.


By Rempt2 On 2013.06.23 10:00
It would be nice not to think about stages but I'm reminded of them every day when I see my husband's muscles contort and he is in pain. If you've had a charley horse you know how it feels. Medicine hasn't gotten it in control yet.

By LOHENGR1N On 2013.06.23 11:10
Rempt, Dystonia is a hard symptom to deal with, You mention the medicine hasn't got it under control yet. What makes Dystonia so hard is sometimes it is a symptom of the disease and sometimes it is a symptom or side-effect from our medication. It might help to keep an eye on when it is worse throughout the day or night. You know does it intensify shortly after taking med's, then lessen a bit before the next doses are due? If it does then in probably is from medication and You can let the Doctor know so They can try another medicine or try cutting back adjusting current medication to a level that at least becomes tolerable. Again this is another example where the Doctors know it can be from the med's but don't let Us patients and Caregivers/partners know most times unless we ask. Take care, best of luck and hang in there

By Freespirit On 2013.06.24 13:52
Thanks for that info., Al, regarding dystonia.

i tucked it away for future reference should I need it.

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