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Topic To know or not to know, that is the question. Go to previous topic Go to next topic Go to higher level

By makrivah On 2015.03.16 08:18
A dear friend was recently diagnosed with PD. He asked me if it was better to:
(1) dive in and do research and readings in order to prepare for the future or
(2) avoid knowing what may be coming in order to enjoy today.

What would you have advised?
P.S. He is NOT in denial.

By lurkingforacure On 2015.03.16 09:34
I think this depends on what kind of person you are talking about. Some people are more comfortable knowing so that they can prepare, even if some symptom or complication will not happen to them. Others prefer ignorance, and that allows them to live to the fullest without the burden of knowing.

If the person is the kind who wants to know, they need to be sure the information they are given/read is accurate. There is a LOT of non- and mis-information out there, and in our experience most of that comes from the medical professionals themselves!

This question to me is similar to the question of whether one would want to know their risk for getting Alz., etc. Some want to know, others don't.

Personally, I think the PD path is so different for everyone and can be modified to a large extent by diet and exercise (emphasis on exercise) that not knowing would allow for a more full life, unburdened by "what if that happens to me too?". For example, we were told at the beginning that my husband would be in a wheelchair by year 8-thankfully this has not been the case.

By Freespirit On 2015.03.16 10:38
I used to not like it that our PD specialist did NOT tell us in the begining what we were in for. . . but now I think I understand that this wasn't because he was shirking responsibility, but really because the specific course of PD is so individual. My husband has a had a very slow journey and at this point, the non-motor symptoms are more prominant than the motor symptoms. Who could have known that his PD would take this course 14 years ago?
When he was first diagnosed, I was in la-la land. I had no clue about what happens in ADVANCED PD, mainly because it is rarely discussed. Looking back, I'm okay with that, I guess. I have kept a lot of information away from my husband on what CAN happen to people in end-stage PD. Maybe that is wrong of me, but I don't want him to know and possibly worry about it. I know, and I will do all that is possible to make his life the best it can be.

By Lynnie2 On 2015.03.16 13:10
At first I got a lot of information about PD and my husband's progress is slow.
His mind is becoming more affected, but really I don't really want to know how bad it will get.
Right now I try to do my best to keep him straight which is mostly about his medication and what we are doing for the day.
I know from other people how things can go, but I try not to dwell on it and get upset. Even if a person didn't have PD would we really want to know our future? It would be scary..........

By daisy On 2015.03.16 15:26
His age and general health at time of Dx could also be relevant. If he's older then knowing all that might happen may do more harm than good and he may die of other causes before PD advances too far.

I suppose what I'm really saying is that it depends on the individual.

In our case, I wish we had gotten more information at the start and if I relied on DH's doctors, I would still know very little at all. I'm one of those people who think there's no such thing as too much information.

Anything, I know comes from my own research and incredibly valuable sites like this.

By LOHENGR1N On 2015.03.16 16:03
As Everyone said it is up to the individual themselves really. However I can speak from a patients point of view and my personal view only. That said being a patient I wanted to know and yes it is scary. However I wanted to know what might happen. I wanted to know so if I was experiencing something or "felt" one way or another was it the Parkinson's or side-effect of medicine or some other ache or pain part of life in general and not the Parkinson's Disease causing it. If He wants to find out and read, educate Himself I encourage it. If or when finding out (because at times it will) become too heavy, He can step back lay the information down and pick up the quest at a later time. I believe to be knowledgeable about one's disease gives a better chance to fight it. Again this is my opinion and I hope My friends with Parkinson's here will weigh in on this with their opinions, as We are the only ones that have Parkinson's Disease here and can answer from a patients view. To squash the thirst for knowledge helps no-one really I'd be worthless to the forum and my friends here if I hadn't thrown into this battle trying to find and learn everything I could about P.D. I would have had not one word of help or encouragement to give to others. Which in a small way can make Our suffering worth it at times when you can pop-in, answer a question or give a hint at making something better in the wee hours of the night when a post is asking for help or even just understanding. To help a fellow Person sitting at the screen of a computer worried, upset and at wits end wishing and praying for help from someone anyone. I better get off my soapbox now before I ramble on and on. As I said earlier if He wants to set down the reading and step away he can and pick it up again later I encourage being informed.

By Lynnie2 On 2015.03.17 11:08
I think you should do research and kind of know about the future, but not dwell on what might happen or when.
I find as a caregiver that if I think too much about what will happen to my husband, then I feel depressed and I imagine he feels that way too.
He has just undergone a lobectomy a month ago and we had no idea that was going to happen. It came out well and I don't think he'll have to have chemo which would add to things. It was the lower right lobe and the after the surgery the surgeon thought it was Stage 1, but the follow up is in a week, so we'll know for sure.
If you know the symptoms that your husband could have, it would be a way of knowing it was from PD.
I hope his progression is slow and it will be easier on you both.
I hope he does some exercises to keep active and maybe a Support Group if one was around.
My husband never liked the Support Group, so it's not for everyone.
God bless both of you. I don't know if you are your friend's caregiver, but if so, I know what you will be going through.
LYNN

By carman96 On 2015.03.20 23:39
Good discussion. Out first neurologist was very poor at informing us what was coming. I did some research but did not know about the dementia part of it. Then the neurologist dropped a bombshell. He thought my husband had MSA. I had heard of it , but when I went home and googled it I was shocked.
I decided then to find a MDS so we ended up going to the neuruology dept at UC Davis Sacramento. We have a good MDS that tells us like it is. She thinks he does have a Parkinson's Plus disease (not MSA) but the treatment is the same as for regular Parkinson's. The Sinemet is still working and that's a good thing.
So I guess I would rather know what is coming, but not too far ahead, if that makes sense

By Lynnie2 On 2015.03.21 10:08
What is Parkinson's Plus?

By carman96 On 2015.03.21 10:34
Lynn, Parkinson's Plus are a group of diseases that have Parkinson's symptoms plus other symptoms not always found in "regular" PD.
These include Multple System Atrophy, PSP, Dementia with Lewy Bodies, and others. Orthostatic hypotension, Dementia and failure to respond to levodopa are some of the things they look at. Also more rapid progression.
My husband still responds to levodopa and the agonists though. But his dementia is progressing.

By jcoff012 On 2015.03.21 18:14
Well, from my personal Cancer journey, I WANTED to know everything, researched, asked the docors lots of questions, etc. but, that is me. I needed to know because my daughter was pregnant with our second grandchild and I wanted to know if things went badly how long I would have to be with him or her. After surgeries and years of followups, I am finally Cancer free. Knowing was important to me.

Now, in my husband's case, things were and are different...We know what is coming because we lived through years of Parkinson's with his mother. That said, my husband and I know that the journey is different for each person, so he reads, has read, joined a sport group, participated in th 23andme survey, all the time saying "it is what it is". He tells me rignorance is NOT bliss, but rather, ignorance. He tells me that knowing PD has many faces makes it easier to accept the future. He wants to be as prepared as he can and it has helped to study and delve into research...all the while knowing that no one and nothing can truly prepare you for the future.


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