Just wondering...

[maryfrances]

Do you get enough support and compassion from your spouse and your family? :confused:

[Stitcher]

NO!! Haven't had that in 19 years of this thing. Althought my daughter's are beginning to come around.

But the PD community and my fellow advocates and forums like this that tolerate my long-winded posts in places like Steve's weekly check-in...are my empathic, supportive and compassionate famly!!

1914

1913 I love my bumper sticker!!

[reverett123]

...she has her own problems and is stretched much too thin. It is almost certainly a mistake but I make a point of not telling her how bad this thing can get.

[chasmo]

most of the time they do. They do not help me unneccessaarily, but they know when I need help and always offer a hand. They are very good about catching me before I fall too.
Their level of assistance is just about perfect.

Compassion, you'd have to ask them!! I do not like people feeling sorry for me. It is not neccessary.

charlie

[maryfrances]

Charlie

I don't want anyone feeling sorry for me either,
but a little compassion would be nice.
It would also be nice if they put forth some
effort to help me research PD.
PD is the elephant in the room that no one
speaks about...
:(

[Stitcher]

:Good-Post::I-Agree: MaryFrances!!

[chasmo]

Charlie

I don't want anyone feeling sorry for me either,
but a little compassion would be nice.
It would also be nice if they put forth some
effort to help me research PD.
PD is the elephant in the room that no one
speaks about...
:(


most people ignore what they do not understand or cannot control.
my kids always are always bringing me news about new breakthroughs.
I think though it is a bit unreasonable to expect your family to help you research. Thats kinda "rubbing their nose in it", so-to-speak. My recommendation is to have an informal "update" once every week or two. "Plant the seed" and see what comes up!!
Ignoring your PD will help them short term.
your family will come to accept your disease in time.

just as you will.

you are the BEST, regardless of your PD. DOn't forget that ever!!

your friend
Charlie

[Sasha]

I'm a widow and my kids have always depended on me to be strong and run things - and still do, so they are pretty much in denyal about the PD; there isn't much other family....my friends just want to be assured that I am okay, and I think I'm being voted off the island at work...fortunately, I have a very supportive Sunday school class! (And long term care insurance) I don't know how this will work as things get worse... Oh - and I see a wonderful psychologist as I can afford to and that really helps. My cat is also very understanding, maybe the most.

[maryfrances]

"most people ignore what they do not understand or cannot control.
my kids always are always bringing me news about new breakthroughs.
I think though it is a bit unreasonable to expect your family to help you research. Thats kinda "rubbing their nose in it", so-to-speak. My recommendation is to have an informal "update" once every week or two. "Plant the seed" and see what comes up!! "


Well, I don't think it is unreasonable to expect your family to be at least a little educated about PD. And I certainly think your spouse should help you research PD. You are very blessed that your family is so involved in your PD. That they care for you and show it. I don't know what I'd do if anyone in my family brought me news about a supposed break through...it would be such a shock to know that they were looking...

The last thing I would ever do is to "rub their nose in it."

:eek:

[BEMM]

I am very spoiled. My husband helps me hugely. He is wonderfully supportive without hovering and without any cloying babying, which would drive me to despair. I was always the caretaker and he the sufferer of a myriad of small and not quite so small ailments. We are both still shocked that I am the one who has PD, I was always so strong and healthy. And I am amazed at the amount of help and support and compassion I receive every day. At the same time he respects my wish to manage my own illness. He does not take over. He is interested in the information I discuss with him, but he does not make my illness his project.
I am convinced that his support and love play a huge part in slowing the progression of my PD. He helps me cope with the illness with humor and patience, and we make the best of what we can't change.

Our children are concerned about me, but talking about my illness is painful to them. I was, and still am, the family's 'Rock of Gibraltar', and it is upsetting when a rock you depend on begins to show signs of weakness.

Remember the woman who lived under a boat, in Dickens's 'David Copperfield? She became a new and bigger person when she felt needed. Some carers become good carers to their own surprise. And some just don't have it in them.

[randy]

mary

i totally empathize with your pain. life sucks when a spouse is not compassionate. you desperately need signs of affection from your spouse.
pickup the book his needs her needs. it will be quite a bit to chew on because your relationship with your spouse is very complex.

randy

[therese]

Mary Frances...to Doreen who has PD...and I want to tell you that I continually research PD...all aspects...medications...adverse side effects...what's new on the horizon, etc. I am constantly searching and researching and, in fact, Doreen often chides me for spending so much time with this...that I'm too "into" PD...but, that never deters me because I feel that as her carepartner, it is my responsibility to do what I do so that I can be the best possible carepartner that I can be. I'll give you an example of how my "carepartnering" recently resulted in resolving a horrendous situation. Doreen's neurologist prescribed a medication precisely to control her now progressing tremor...and it certainly was the answer...absolutely controlled the tremor...really, eliminated it...BUT, the terrible adverse side effects almost "did us both in". Initially, I began to notice some things that just didn't seem "normal"...disorientation...confusion...disorganized (so not like her)...lack of short-term memory...but, she still continued to work as a medical assistant so that I felt surely it was just I who was alert to these things...that surely, if she were not able to do her job, someone would have spoken with her AND with me (they know me well enough to have done that), but there was nothing coming to me nor to Doreen so that I felt that I was being unduly concerned. To make this as brief as I can, ultimately, Doreen was "relieved" of her position as the assistant to the cancer specialist in the practice (had been his assistant for 20+ years) BECAUSE she wasn't able to function in that position due to the cognitive impairment. My first and most fearful thought was that the PD had progressed, but I just didn't feel that this would happen literally "overnight". I decided to do an extensive search/research on all the PD medications that Doreen was taking...and, ah ha...I found the culprit...Cogentin with all the adverse cognitive side effects that Doreen was experiencing. I immediately discussed all that I had learned with Doreen's neurologist who began gradually weaning her off Cogentin...but, this, too was a difficult process in that she had an "attack"that was very like what one would see if/when viewing Michael J. Fox at his worst...and I immediately thought that this seemed very much like a withdrawal symptom occurring during the weaning off period. The point that I've been attempting to make, here (albeit, kind of long drawn out) is that it was only through my observations...my search/research that all of this was resolved...my being constantly alert to PD, its own symptoms and those related to its medications that we finally came through this maze...and I assure you that I will continue my pattern of watchfulness because, for me, this is my responsibility as Doreen's carepartner.

Therese

[maryfrances]

that's what i want ...
you sound like a wonderful care partner
i would just be happy if some one acknowledged i had pd

[Curious]

mary frances, when you were dx'ed did you keep your pd a secret? from co-workers..friends...relatives?

that is what happened in my family. then it was the elephant in the room. we didn't know if he wanted to discuss it. he seemed to avoid the conversations. never brought up the topic. it was like it was taboo. we weren't given the green light that it was ok to talk about.

it was a bad med reaction that let the whole herd of elephants into the room! we had to tell him he had to tell is what his needs were and the way he wanted things. it's him who has pd, but it effects the whole family.

it was after all that, he said he hadn't felt any compassion from all of us. honestly....if he had only told us what he wanted, we could have expressed it.

have you told your family what your needs are? flat out said it?

so many times the woman in the family are looked at as the caretakers...and the family doesn't know how to swtich the roles.

:hug:

[BEMM]

One point, and an important point, that I neglected to mention is that my husband and I are an old couple, married 49 years. Things might have been quite, quite different 20 -30 years earlier. I know it is much harder to be young and have PD, and to be young and have a partner with PD.
We're getting rickety together, my husband and I.

I wish the world was nicer and life was more fair.......

[chasmo]

"=

The last thing I would ever do is to "rub their nose in it."

what I meant by that Mary, is you cannot control their perceptions, and they will undoubtedly feel that way until they understand the disease better. You would never consciously do that, but their perception may be that you are.

We all go through a period where PD "rules" our lives, then we learn to live with it and it gets better.

I'd suggest getting them a young onset group meeting somewhere,, so they could see what can possibly happen for themselves. Thats a stiff dose of reality, but it just might what the doctor ordered.

Charlie

you do not have PD alone, your family has it with you.

[Todd]

Hi Mary,

First... :hug: :hug: :hug:

Second, you've met my wife and know what her personal challenges are as well. She has taken some time to come closer to her own version of understanding and acceptance. Attending the YOPN in Chicago was a big step for her. I've just realized that some people take the scenic route to arrive at their destination, while some of us take the direct route.

I do feel your pain in terms of family though. I have no family personally, so all I have is my wife's family. And my PD is never spoken about. Period. When I was first diagnosed and announced it to everyone I knew, not a single person from her family said a thing. Nada. Zip. Zero. I made video tapes of MJF and Ali on Dateline and other programs and gave them to the family to try and open the communication, provide information, and possibly answer questions they may have had. I've provided copies of articles I've either written or been featured in. No change.

It makes it very difficult for me to be around them. But I realize that I can't change the way they are, or they way they choose to "cope" with this issue, so I just move forward. Like you, I'm not looking for pity or being constantly asked how I'm doing. But an occasional comment of concern or caring would be nice. Hell, we have a woman in our local young onset group whose brother literally drove around the world to raise funds and awareness for PD and I can't even get my wife's family to check out my website or wear a t-shirt! Crazy...

I do envy those with strong family support. I know that can make a huge difference in how you personally cope with your own version of this disease. So hang in there. Things in life don't always work they way we imagine, but we always seem to find a way through it. I know you will as well!

"Life is what happens while you're busy making other plans."
-John Lennon

[maryfrances]

Todd

Thank you so much!!!! Finally! Someone who understands how I feel completely. Your response was exactly what I needed. You really do
know how I feel. Thank you for your kind, considerate response.

Please consider me part of your family. If you or Joyce ever need anything please let me know.

Mary

:hug:

[bluedahlia]

I also did not get much support from my now ex-spouse. That sentence says it all. :wink:

I was 47 when I was diagnosed and all I was looking for was validation and a little tolerance for what I was going through emotionally. I could go into a long diatribe but won't bore anyone with the details. All I can say is it really hurt, and still does.

My children have learned to understand the disease through my progression and are beginning to "get it".

My parents and siblings have been wonderful throughout this ongoing ordeal.

[CTenaLouise]

I give thanks for those I had - I miss them -
so I do not cry much anymore,
unless -a tear escapes
I can't allow the memories to hurt me...over and over
so I try to only remember the happiness that I had for it was a gift...

and those that love me - I am very grateful I have ... and they are my presents

I can not change my past/ I can not change people -that is not my job
I live -one day at a time, and try to live in that moment and be happy in that very moment in time.
and I look forward to eternity where time is no longer relevant...
but love still is~

to sum up I'd say: ;)

Life is a poem by emily dickinson - she broke all the rules of poetry -
she did not write for money or fame; and when she showed her work to a friend -he told her she was not talented
so she wrote her poetry because it made her happy - actually ~
most of her poetry was published after she left her mud body behind
for she was headed towards eternity


luv and peace to youall...

[vertigo]

Hello Todd
Thank you for your honest article, it is important issue to lift out in the open air. It hurts when someone you trust don´t care, but mentally leaves you. I am learning a lot about love and narcissism's , and I DO NOT BLAME MYSELF ANYMORE.

[maryfrances]

That was beautiful, Tina.
Thanks for sharing.

[MKane]

What is family? To me family are those people who care about me. I was engaged at the time of dx. He couldn't handle it and left. Eight years later he returned an told me he could not live without me. Then his family convinced him that it was a mistake and he left for good again. My family is embarassed by PD and will not associate with me. On the otherhand, I have increible friends who have supported me with their love for many years. One couple drove me 500 miles and spent 10 days with me during the DBS surgery and recuperation. Another friend hauled me 500 miiles each way for programming. Another friend intervened when an ER physician tried to have me put into a mental hospital because of dyshenisia. These are the people that matter. I am so thankful for these wonderful friends.

[reverett123]

Blood can be thin and talk cheap, but actions speak for themselves.

BTW, MKane, greetings from just south of Knoxville! :)

What is family? To me family are those people who care about me. I was engaged at the time of dx. He couldn't handle it and left. Eight years later he returned an told me he could not live without me. Then his family convinced him that it was a mistake and he left for good again. My family is embarassed by PD and will not associate with me. On the otherhand, I have increible friends who have supported me with their love for many years. One couple drove me 500 miles and spent 10 days with me during the DBS surgery and recuperation. Another friend hauled me 500 miiles each way for programming. Another friend intervened when an ER physician tried to have me put into a mental hospital because of dyshenisia. These are the people that matter. I am so thankful for these wonderful friends.

[AnnT2]

Just as they cannot put themselves in our shoes, we cannot put ourselves in theirs. They are probably trying to have you, the inner core person, not the person with PD, as their partner as long as possible. They do this for two reasons: they want to pretend this disease has not fallen on both of you and that things are still livable, reminiscent of your pre PD days, and 2)they don't want you to see the fear or concern in their eyes. It is no picnic to have this disease, but then again it is no picnic to be the caretaker. If I had a choice .....well, I don't know.


Ann

[BEMM]

I would be an overbearing over fussy over concerned pain in the neck as a care giver. I'm nicer as the patient.

[maryfrances]

If I had the choice.......I'd rather be the caregiver.

[chasmo]

If I had the choice.......I'd rather be the caregiver.

unfortunately we don't have a choice. I would not wish my PD on any loved one in any event.

Charlie

[maryfrances]

I wouldn't wish it on anyone period.

[chasmo]

I wouldn't wish it on anyone period.

sorry,I had the idea that either we could have PD or be caregivers for a spouse.

Sorry for the confusion. I should have re-read the thread.

CHas

[steffi 001]

Hi Mary....forgive me if I`m wrong but reading between the lines I sense there is a total lack of compassion or indeed acknowledgement of your illness .And if this is the case then it paints a whole different scenario.A partner might feel inadequate,or useless in the help department but if they can show compassion and care,provide a hug when needed,then that makes up for their lack of skill in the "nursing" mode.However,if you are receiving absolutely zilch,then this must be so dreadfully isolating for you. You must feel very hurt and I don`t truly know how best to advise you on dealing with that issue.You would be wise to start building up a circle of tried and trusted friends...people who are positive...people who would be there for you.This forum is a start but I mean folk other than cyber friends...who can be physically present in your life. It is so important Mary,that you know you have someone who is on the end of a phone for you.If your husband has opted out of the running,it doesn`t mean that someone else can`t take his place.That was his choice ...for whatever reason...but it shouldn`t stop you from spemding time with people who do care for you.Sending you a huge hug.
Steff
x

[Stitcher]

Just as they cannot put themselves in our shoes, we cannot put ourselves in theirs. They are probably trying to have you, the inner core person, not the person with PD, as their partner as long as possible.
In defense of my oldest daughter and while I know my grandson is only 5-1/2 and I have had PD for over 19 years now. My daughter's perspective is, "I have enough to deal with...Ollie's autism...I don't need anymore to deal with."

This doesn't help me at all, not in the 14 yrs before he was born or in the 4 years since he was dxd, but I do understand her issue.

This interesting thing is that when we thought I had the big C over a year ago, she was right there with me, by my side at the doctor visits. As she put it, "Mom, you might have cancer, don't you want someone to go with you?" In my head I was thinking, "Why? No one wants to go with me to my nueorlogy visits, nor does anyone speak of my visits before or after. So I might have cancer, big deal, I already have a death sentence of sorts in my head."

Just why does Cancer get so much attention, whiole PD, ALS, MD, etc. not get much attention. Yes, I know the answer in part, it is in our faces daily on the TV, etc.

A bit of compassion from my sisters would be a nice thing to hear from time to time. A bit of "educated" discussion from and with my sisters would be a nice thing too. But, this is not going to happen and I know it. They are both just glad that I am being "taken care of" by way of living close to my daughter's. My oldest sisters FEAR for a long time was that I would need to live with her at some point and that was going to be a horrible thing for her. Not having her beautiful home to herself was not acceptable. To have to share it was just as unacceptable to her as it is for my daughter to have to deal with PD and autism in the same breath.

[maryfrances]

You are so right, Carolyn
Could it be that cancer is seen as possibly fatal
while pd is seen as more of a long term handicap?

PD is such a humiliating disease that takes away
the dignity of the person with it, as it slowly but
surely progresses.

[BEMM]

Cancer is a killer, PD is a crippler. Cancer doesn't make you dither or shuffle or shake or drool or eat messily. Cancer is dignified and potentially immediately fatal while PD kills slowly and insidiously. There is no drama in PD. We can live for years with PD though it slowly eats away at our health and ease and comfort. PD is a mean illness that often elicits more embarrassment than compassion.

[maryfrances]

That is so true.

[Stitcher]

BEMM...I couldn't have said it better.

I know I shouldn't have been, but I was quietly furious with my daughter wanting to tag along for the cancer dx, which gratefully didn't happen, I indulged her...the cancer that is, just a scare.

[AnnT2]

Having had both diagnoses - breast cancer in 1981 and Parkinson's since 1996 - I can attest to PD being tougher to handle. To begin with, with cancer, the patient knows they just might overcome it. With PD, the patient knows that it is never going to go away and along its route it will chip away, chip away, chip away at your independence.

Now for the reactions of my family to both: with cancer they all feared I might die so they were very concerned. With my PD, they are more laid back. To them I am doing well. They don't understand that while I look okay and "pass" for normal, I struggle with the symptoms 24 hours a day, every day of the year. Nor do they understand the biggest problems with PD are not the physical ones, though they are mighty, but the psychological. You fear the future and note each failing as a harbinger of more disabling symptoms to come. In a way, I shelter them from my fears and physical ailments. How can it help matters if they get as fearful as I am?

As far as talking about it, you are right. There is little or no conversation coming from my family. Once I had two friends from the forum visiting, and my husband asked them a question about PD!! Again, I think their avoidance is more one of anxiety and their desire not to make us aware of their concern because it will make us (especially me) more anxious.

What the heck! Somebody, anybody! Just come up with that cure (some silent cursing going on here).

Ann

[chasmo]

it's like anything else in life, you can beat your PD or you can let it rule you.
I do not care what total strangers think of me. I only care that I can get out and do things and LIVE!

MY advice to you all is to GET ON WITH LIVING!! Everyday is a gift, don't squander them!

You CAN beat your PD! You have to work at it, but it CAN be done.
Don't sweat the stuff you can't change!! It will change over time. Be positive about your life. Good things will happen!!
Charlie

[jeanb]

A friend got the breast cancer diagnosis a few years ago. I offered her my sympathy and gave her support and encouragement.

And inside I was thinking the unthinkable - that i envied her. I envied her because with breast cancer she had the hope for a cure. While daily I get a little worse, with little hope of a cure.

And when I lobby my congressmen for PAN each February, I tell them this.

(And I am very happy to say that my friend IS cured.)

[chasmo]

my friend Dana is dying from breast cancer. it is in her brain and liver. Early detection is the key.

It is unfortunate that we do not have a better research protocol with its attendant leadership. It would not surprise me at all to learn down the road, that researchers found a cure but just did not realize it at the time.

We all need to lobby our elected officials for a cure. A staffer once told me that just 10 letters on a given subject gets the Congressman's attention.Surely we can do that!!

CHarlie

[randy]

Do you get enough support and compassion from your spouse and your family? :confused:

i've been lurking here awhile. and i know mary frances quite well. and yes i can testify that she has received very little support from her family.

i'm 43, had this #%&&** disease several years now. I used to be a marathon and 10k runner. now i struggle walking a mile.

this past year i've really wondered why my spouse of 19 years has had such a hard time providing support and care. I think partially it is the seduction of the disease. I look good externally (she says) but i agree that the real battle is internal. I also think she is scared as hell about my future, and lives in denial.

where i live, part of the folklore of the prevailing culture is "take care of yourself" ...which i believe is unsustainable in a life with pd. so i've broadened my scope to include those who really care. Mainly I think we often need words of encouragement. For example when a fellow parkie says "pd sucks" i laugh and the day gets a little better because they know it far too well.

Instead of getting bitter, I've become activistic in pd stuff. I dont know if its gonna change the world, but im swimming and not sinking.
so hang in there everybody. looking forward to meeting more of you

randy from beautiful lake country in minnesota

[indigogo]

My story is a little bit different ...

When I was diagnosed in 1999 at age 41, one of the first things I decided to do was to divorce my husband of 19 years. I instinctively knew that this disease was something I wanted to face on my own; that I wouldn't have the strength to deal with it, a young daughter (who was 10 at the time), and a relationship that was rocky at best.

My husband was not happy; but I persevered. Our divorce was finalized in 2001. Six years later, my ex and I are great friends, I think mainly because we had a daughter to raise together. She is a freshman in college now, and the three of us spent Thanksgiving together yesterday. Mark says it took at least two years to let go of his anger; he now says it was the best thing I could have done. I am remarkably happy, and I have no one to please on a daily basis but myself. I am incredibly fortunate, because this outcome was not one I sought, nor thought would happen when I initiated the divorce. It is just a great relationship that emerged over time. I even am friends with his new girlfriends! (there have been a few ...)

Regarding my family, my daughter treats me as if I don't have PD, I think because I have refused since the beginning to make any changes in her life (besides the one HUGE change of divorce) due to my illness. No extra chores, no missed vacations, no excuses. She has done volunteer work for the Northwest Parkinson's Foundation and helps out at local conferences. I would appreciate MORE sympathy from her, but am grateful that she stills likes to hang out with me, even if she cuts me no slack. Harsh.

The rest of my family lives in Colorado. My parents are in their 70's, and wish I were closer to home. They have been an incredible support - bought me a condo when I lost my house. They are not rich, just frugal - and the product of loving parents themselves, who left a house to them when they died. They are proud of the advocacy work that I do, and for the first time in their whole lives did not vote Republican for president because of the stem cell issue. My sister volunteers for the Parkinson's Association of the Rockies in Denver (she stuffed envelopes a couple of weeks ago for them).

I have to think they would have loved me no matter what, but I think the way I dealt with the PD helped with the way they responded. As soon as I was dx'd I told everyone that I knew, including everyone at work, and I live as openly with it as possible (telling anyone who stares at my shaky hands that I have Parkinson's).

The support given me by (ex)spouse and family is incredible. I realize how lucky I am, and am overwhelmingly thankful for their love. I could not have foreseen my current situation as I struggled through divorce and job loss six years ago; it was an evolutionary process.

I will be 50 years old on December 1, and I am utterly delighted to be alive!

[proudest_mama]

Thanks to all who contribute. We each have different stories but I know that it's GOT to help more than just me realize that we're "normal". If I've said it once, I've said it a billion times ... this site is honestly, hands-down, what keeps me sane. I know that I can turn to any of you, any time, and you'll understand .... truly understand.

Right now I'm at a turning point in my life which many of you know. To stay married or not. I am so very undecided on this issue, and change directions more time than the wind. My prayer is that God make it plainly known by slamming every door shut but one. And, dang it, patience is not my best virtue! So for those who believe in the power of prayer, please send them to Houston, TX.

During this holiday season, I am thankful for this website, the moderators, and all the contributors. It wouldn't be what it is without the people involved.

You guys (and gals) are the best.

[CTenaLouise]

oh my dear,
I am living alone with PD is not so great, you will have to have a nurse sometime - I know this now -one time unthinkable

so please do not rush to finish your marriage -

my ex-husbandex-humanbeing - did not love me- he had some girlfriend
telling him lies about how horrible being marrried to a sick woman would be
so he chose her and abused the hell out of me
exbaastard taught the same ole BS to my only child - my 22 year old son, that I havent spoke with for an entire year, and while going through the divorce the first 2 years.. because to him - I am dead already.

if hate is the problem - then - chose love without the mad hater...
their is high stats for men leaving -lower stats for wifes leaving...
I believe the courts have left most women in a bad way...on state aid as I am...
pray for wisdom...

[maryfrances]

Tena

I am so sorry.
MEN!!! You can't live with 'em...
You can't shoot 'em.
(Just kidding, guys)

Thank you, Tena.
I hope we get to meet sometime.

Mary

[maryfrances]

Thanks to everyone who responded to this thread.
What heart wrenching stories.
What inspiring words.
What understanding.
Love to you all.
Mary

[reverett123]

...have come to mind as I've followed this thread. First is the fact that I really do care about each and every one on this board. We may be faceless bits and bytes on one level but we are painfully real on another. In a very real sense, we are family.

Second, I will not bother to apologize on behalf of men. Like women, we come in all sizes and some of us are real jerks and some are angels and most are in between. I don't know where I fall, but my heart goes out to tena and proudest mama and mary frances and you others. And a tip of the hat to indigogo.

Our shared curse has the unfortunate nature to be purportedly incurable. People who might stick with us through cancer go pale when the reality of PD sinks in. Then there is the fact that most of us are the type that would stick with it for THEM, and when THEY turn out to be less when we need their help, then it sucks. We deserve better.

My own marriage holds and I hope it continues. No kids and most of my family gone, it would be awfully empty without her. But, on the other hand, I wouldn't want to watch this curse destroy her as well.

I guess that's all. God bless. -Rick

[randy]

MaryFrances

It's been a couple of weeks since you last posted. Any improvements in life?

Randy

[proudest_mama]

I can't speak for Mary Frances, but the only way my husband is going to change is through divine intervention.

Indigo, ironically I did what MY husband would have wanted ... I didn't tell anyone about my PD other than those that I know would help, needed to know, or who would not dwell on the disease. In other words, I knew that he wouldn't be comfortable if people came up to either of us questioning my health. I think he was blown away by that because in his mind he honestly thought (and probably still thinks) that I would tell people just to obtain some sympathy and pity. H-E-L-L-O ... do any of you who "know" me think that I'm that type of person???! And I've been doing this for over four years now.

And, unlike Indigo, if my husband and I ever get a divorce, it would never, ever lead to a friendship. Not that I wouldn't try, but if I took even one penny more than he thinks I "deserve", then I've totally ripped him off. Money defines who he is. Sad, but true.

And, if you want a good chuckle, this is what one of my children said recently ... "Mom, if you get divorced, we'll be rich." When I asked why, he said, "Because you'd give us money here and there and dad would as well." When I replied, "Excuse me?" meaning, of course, that my husband NEVER just gives them money, he replied, "He'd give us money because he'd have to have some type of bribe for us to come visit him." My kids are more astute than even I would have thought. LOL

And, so, I'm still at a crossroad, but I think the path is headed in one direction no matter what I do. I just can't play the game any longer. I want to wait until after the holidays so as not to totally disrupt our kids' lives (our three older kids will be home for their college break) and I was hoping that we could hold on another 3 1/2 years until our fourth child is out of the house, but the tension, the atmosphere, etc., isn't conducive for my health ... nor is it the environment that I want child #4 to have to deal with.

Please keep those prayers coming! It ain't over until it's over.

[EmptyNest68]

I'm a widow and my kids have always depended on me to be strong and run things - and still do, so they are pretty much in denyal about the PD; there isn't much other family....my friends just want to be assured that I am okay, and I think I'm being voted off the island at work...fortunately, I have a very supportive Sunday school class! (And long term care insurance) I don't know how this will work as things get worse... Oh - and I see a wonderful psychologist as I can afford to and that really helps. My cat is also very understanding, maybe the most.


Yes, cats are the most understanding...I miss mine!

[K.Ibsen]

My immediate family has handled it well. Three kids at home with the two youngest being sophomores in high school. One child is autistic, so we, as a group, have long experience with living with someone who has a disorder that makes them different. My father was dx'd with MS late in his 50's, but I'm convinced now that it was probably PD. My mother cared for him well, but it was a terrible strain on her. It is hard to know who has the worst of it, the caregiver or the patient. My personal observation leads me to conclude that it's difficult for both.

Curiously, I, like indigogo, seriously considered divorce--probably in part due to my recollections of what my mother endured. There's more to it than that, however. It's hard to describe my thinking about this, but I think that I might find peace in solitude. Also, my wife is lovely and healthy and could be much happier with someone who was as healthy and alive as she is. It's odd that I look pretty much the same on the outside, but what's happening on the inside is making a big difference. Other people can only see, and deal with, the persona that we provide to them.

I'm newly diagnosed. It was only during the spring of this year that the word parkinson's was first mentioned. Oh, the symptoms had been there for years. It just took a while to connect the dots. It was only in the last few weeks that I first was able to speak of the fear of what may lie ahead for me. So I guess you could say that I'm at the beginning of the road that many of you have already traveled. So many thoughts. So many worries. So many questions with no answers. So much fatigue. So much pain. Doctors. Brain chemistry. Medication schedules. Trying to return to work with a boss who's angry because my schedule is controlled by doctors and not her. It can be overwhelming. All the while, it remains mostly my own personal struggle. Others can help. Others can care. But in the end, it's up to me.

I feel great compassion for those who are not receiving the support you need. I'm not sure that "support" is the right word, but I can't think of a better one right now. I guess each of us has our own unique needs. I'm still trying to figure out what my own needs are. One thing I've concluded is that I want to live as well as I can for as long as I can.

I'm glad I've had the opportunity to get to know all of you here in cyberspace. Over the last nine months since PD became part of my life, this forum has been most helpful to me. I'd love to be able to meet so many of you in person.

[indigogo]

K - you said:

"Curiously, I, like indigogo, seriously considered divorce--probably in part due to my recollections of what my mother endured. There's more to it than that, however. It's hard to describe my thinking about this, but I think that I might find peace in solitude."

I would not recommend divorce as a remedy for everyone; it worked for me in my particular circumstance. I absolutely treasure my solitude. It outweighs all else, and fuels my ability to interact with others - when I choose to do so.

[vertigo]

Hei, - the PD is becoming more scaring to me , I can feel that it I change. I am going to do something , : life is wonderful if you can live with your clear and personal mind,
if not, life for me is over.
One of my daughters have "put me out in the wood", she treats me as nobody, no calls ,invitations, no visits. Before the dx. we where close."If you want to See us, you can come ,sit in the sofa ,see TV, we don´t have time for you."
Why ? In a way she has divorced me. I UNDERSTAND THE WAY OF SOLITUDE, agree !

[paula_w]

I have told my story before so briefly I"ll just say that Pd did cause my husband and me to separate. We had two teenagers involved in everything under the sun and I was immersed in the computer, my source of support, which turned to activism.

The relationship was volatile before PD; I cannot say if we would have stayed together had I not gotten it.

Oddly tho. we have a decent relationship separated, kind of like Carey without the divorce. We have bumpy times, mostly over money [our family has expanded to a grandson who we all love to pieces] as my daughter and grandson live with me and he has a deadbeat Dad.

My husband doesn't like to listen to my PD stories for very long and there are times when I just want to never speak to him again. My daughters are each different. The one who lives with me is oblivious on the outside; the other is writing her second report in college on stem cell research. The anger seems to pass, and I think my husband is supporting me the only way he can - helps financially and with the house, takes me grocery shopping. It's working for now. I just don't know what the future holds..so I don't dwell on it...just stay busy.

paula

editing to add because it seems relevant to some of the posts: I was the one who left because I couldn't take care of a family anymore. I didn't have the energy to handle the problems. I just sort of detached.

[K.Ibsen]

I've continued to think about the "peace in solitude" notion. Perhaps that's not quite it. Perhaps it's about having the ability to choose. There are many times when I'm feeling well enough to want to socialize. But there are other times when having others around me can be uncomfortable or even stressful. It is those times when solitude becomes desirable. There have been times when I have felt so miserable that I just want to turn off the world until I'm ready to face it again. When living with others, that is often just not possible. When living alone, one would have the freedom to do what one is able to do when one is able to do it.

It's not that I want to hide my PD. I, again like indigogo, have been quite open about it. It's sort of like living two lives. One is when the meds are working and I'm feeling like being part of the normal world. The other is when the symptoms are prevalent and I feel most comfortable in a much smaller space.

I'll probably be thinking about this one for a while...

[indigogo]

K - you are right about "choice"; I call it freedom; with no one to please but myself. This can have positive and negative consequences. There is no one to prod me into a regular exercise program or to make sure that I eat right. But I have no stress related to keeping irregular hours; sleeping when I need to sleep; cleaning for myself only; generally pacing myself for my needs alone. I do have a dog and a cat that help me stay on the path of responsibility; but they are far less critical than an annoyed spouse.

As an extroverted people person, I am surprised at how much I enjoy the solitude. I sometimes miss the regular companionship of a mate - to go out to dinner with or to a movie without making plans in advance. But I decided long ago to accept the occasional pangs of loneliness in trade for the freedom to choose for myself. I might have made a different decision if I had been married to a different person. Regardless, when I decided to get out, my purpose was to regain control of my life while I still had the chance; the idea of a new relationship was not a factor. I have come to the realization that the enjoyment I get from life on my own is more important than being a couple.

I have a lot of love in my life; a supportive family and friends who care. But at the end of the day, I am happy and content to close the door to the world and wake up in the morning alone.

[maryfrances]

K
You truly do have a lot on your plate... yet you and your family seem to be persevering in spite of it all. Yes, it is true that people only see what we allow them to see, but still......I think people have the ability to detect when something is wrong with us in spite of the way we behave on the outside IF they take the time to notice...some people are very perseptive.
I'm so sorry that PD is another road that you must travel. I'm sure you have so many questions ......and some that may never be answered. I do wish you the best in your journey. PAN is having a conference in February. That is a great opportunity to meet people from this forum.
Maybe I'll see you there?

Indigo
I too, treasure my time alone.....I have so little of it these days.

Vertigo
Your daughter is probably acting out of fear. I am so sorry. I know that doesn't help matters. Maybe you could talk openly with her about how you feel or put it in a letter? Or even start a journal and let her see it one day?
Communication is difficult for me, as well. You are right though, life is worth living and living well. Take time to laugh, dance, sing, smile, help some one else.......

Paula, I know living with your daughter and grandson has its ups and downs ...I'd say mostly ups? To your daughter in college ......"you go girl" maybe she'll discover the missing element in the cure for PD. I wish you the best.

Randy, things are about the same, but I find I am changing...doing more, venturing out, taking risks, living life, loving, laughing, making memories, etc. whenever I get the opportunity... for example, I went sailing with a friend and made a memory I shall always treasure. Thanks for asking.

I guess the all we can do is to live life to its fullest now and as often as we can......smile, laugh, sing, dance, have fun, love, reach out to others, be a friend and value your friendships, etc.

Love to you all,
Mary Frances

[maryfrances]

Rick, I can't forget you! You sound like a good man. Your wife is very lucky.

[Suffolkchris]

I wonder what the split is with regular contributors here between

1. Living with partner with support.

2. Living with partner with little or no support.

3. Living alone.

Perhaps be interesting to have a poll

Maybe we should have a poll.

Chris

[vertigo]

Suffolkchris , I have lived alone for 30 years, having men in my life ,but not common bank account or dirty linen. My 4 children was and is enough for me, PD. take at lot of time and I can be selfish without hurting anybody ,so for me it is the best.
If you have someone who really loves you, it is a great gift to live together whatever life brings, we are together.
The worst must be to live with someone who does not care about you. I know it is not easy to create your own world and still have a good life in your glassball, may be it is this solitude you have to work on every day.

It has been a lot of honest and touching replies on this threat, thank you to everybody
who is out of their closet for a while.

Annelise

[pgirl]

...have come to mind as I've followed this thread. First is the fact that I really do care about each and every one on this board. We may be faceless bits and bytes on one level but we are painfully real on another. In a very real sense, we are family.

Second, I will not bother to apologize on behalf of men. Like women, we come in all sizes and some of us are real jerks and some are angels and most are in between. I don't know where I fall, but my heart goes out to tena and proudest mama and mary frances and you others. And a tip of the hat to indigogo.

Our shared curse has the unfortunate nature to be purportedly incurable. People who might stick with us through cancer go pale when the reality of PD sinks in. Then there is the fact that most of us are the type that would stick with it for THEM, and when THEY turn out to be less when we need their help, then it sucks. We deserve better.

My own marriage holds and I hope it continues. No kids and most of my family gone, it would be awfully empty without her. But, on the other hand, I wouldn't want to watch this curse destroy her as well.

I guess that's all. God bless. -Rick

I am new to this forum. My husband was diagnosed with Parkinson's Disease several years ago. He is amazing and has seemingly handled this disease head on. I am devastated now because he has decided after 29 years of marriage that he "doesn't love me like he should" and has moved out. I love him dearly, Parkinson's or not. Will this disease cause emotional detachment from loved ones. He says it isn't me, it is him.....which doesn't help at all. I am just as crushed. He said he has felt this way for some time, but never told me or anyone else, and he never sought any help, counseling, or anything. Just planned his departure. We have two beautiful daughters and have created a very nice life together. I am dumbfounded as to why he lost affection for me and wants to "find his happiness" somewhere else. He says he isn't even sure he will.....Why would he throw me away - someone who loves him dearly. I don't get it and I have had zillions of questions since he dropped this bomb! Why, Why Why????????

He is a member of this forum and has a great deal of respect for everyone here, especially you reverett123. I would appreciate any insight you have.

[reverett123]

pgirl-

I've had to think about this one awhile. Since I don't know you nor your husband, I can only write in the general sense and hope it helps.

There are only a limited number of explanations. One is that what he says is the truth and that the mother of all midlife crises has forced his hand. If that is so, he has done you a cruel kindness, I fear. It will be far easier for you to rebuild your life than for him.

Another possibility is that he believes what he tells you but that he will find that he was wrong and that he does indeed love you. Regardless of PD or not, many a man has made this mistake to their eternal regret. If this is true then it will be up to you to decide how long to wait and whether to forgive.

Another is that he is a damn fool and thinks to spare you the pain of the years ahead. That's my own style. Be the hero, shoulder the burden, and step into the darkness alone. The problem is that no one is spared anything. The pain is going to be there. Period. Neither of you is going to be spared. You are just going to both suffer alone. It is like an emotional suicide where one thinks that they spare the other but in fact do just the opposite.

This last scenario is the most tragic because of what is lost. Those moments of caring and remembering the other and helping to bear that burden and weeping and laughing and all the rest. You cannot throw away the pain with intent but you can throw away the blessing that comes with it by accident.

I don't know if that helps or not. God bless you both.

[pkell]

I had a friend many years ago who had pancreatic and liver cancer. Her best friend was a nurse with a doctor husband. They did everything possible to allow my friend to remain at home through the course or the disease, right up to the very end. If any of you have ever dealt with this cancer, you know that it is seriously painful and there is an extraordinary amount of suffering before it mercifuly ends. Her husband of 60 years was by her side through the whole thing.

After she died her husband was unable to stay in their home. Within two months he was living in the home of a widow who had been a mutual friend of theirs and within six months they were married.

All this may seem very off point, but the reason I'm relating it is I determined at that time that I did not want to ever put my family through that kind of pain. This was years before dx with Pd. I have been married over 40 years and I still don't really know how I want to be treated by my family. I did not grow up with a strong model for parenting (read nurturing). Fortunately my husband is very nurturing. My children got "stiff upper lip" and good table manners from me. (Not that they are bad things.) Mostly we avoid it as much as possible. It is easier for me and I have to think easier for them as well. I do wonder, sometimes, just how long you can stay in denial.

I have come to know many of the posters online and find that we can talk about the problems and worries of the disease without pity or hovering or sad eyes or well intentioned knee pats. In the middle of a sad story one of us can make a joke and it isn't looked upon as irreverent or lacking the gravity necessary for the topic.

I know that there will come a time when my family and I will have to face the really bad things that will happen, and i probably will have done no more planning for it than I have at this point. Maybe that's ok. Maybe the years we get that are worry free are worth it. I don't know. I guess we must, each of us decide what we need and ask for it. Then if we don't get it, at least we'll know which decisions we have to make.

[indigogo]

pgirl -

I don't think there is any real answer for your question. But I am responding with my own experience because I left my marriage of 19 years within 6 months of my diagnosis 10 years ago. My situation is different than yours - I did not stay married for years before deciding to leave; I left because my marriage was not strong and I did not want to face years of decline and disability dependent upon my husband.

Looking back, it was a good decision for me; it was tremendously difficult for my ex (we have become great friends again), and tough for my daughter who was 11 at the time, although we kept her in her home and in her neighborhood schools throughout. We've all survived - and even thrived.

For some reason, I have felt since the beginning that my PD diagnosis was my problem and no others'. I am happy to live alone and not have to deal with the stress of another person, no matter how much I might love him or her. It's a very selfish decision, but I think it makes me healthier. The changes that PD brings to a person's psyche, behavior, outlook, regardless of the physical challenges, are so difficult to deal with personally. I have a hard time living with myself - I don't want to have to explain myself to another.

I'm not sure this helps. It is so personal to me. Maybe it means that whatever is driving your husband's behavior is inexplicable to no one else, maybe just a feeling of survival. My husband was devastated and unable to understand why I would reject his help and love. It was just something I had to do, to make me able to deal with the new life that PD had thrust upon me.

I'm so sorry you are in this position; feeling helpless and out of control is so hard. I hope you can approach him with love even without understanding.

[pgirl]

pgirl -

I don't think there is any real answer for your question. But I am responding with my own experience because I left my marriage of 19 years within 6 months of my diagnosis 10 years ago. My situation is different than yours - I did not stay married for years before deciding to leave; I left because my marriage was not strong and I did not want to face years of decline and disability dependent upon my husband.

Looking back, it was a good decision for me; it was tremendously difficult for my ex (we have become great friends again), and tough for my daughter who was 11 at the time, although we kept her in her home and in her neighborhood schools throughout. We've all survived - and even thrived.

For some reason, I have felt since the beginning that my PD diagnosis was my problem and no others'. I am happy to live alone and not have to deal with the stress of another person, no matter how much I might love him or her. It's a very selfish decision, but I think it makes me healthier. The changes that PD brings to a person's psyche, behavior, outlook, regardless of the physical challenges, are so difficult to deal with personally. I have a hard time living with myself - I don't want to have to explain myself to another.

I'm not sure this helps. It is so personal to me. Maybe it means that whatever is driving your husband's behavior is inexplicable to no one else, maybe just a feeling of survival. My husband was devastated and unable to understand why I would reject his help and love. It was just something I had to do, to make me able to deal with the new life that PD had thrust upon me.

I'm so sorry you are in this position; feeling helpless and out of control is so hard. I hope you can approach him with love even without understanding.

I do love him and I don't understand.....
It is painful to think that a Parkinson's Disease diagnosis is justification for destroying a spouses life - not to mention the children. I get that he is dealing with an insidious disease; I get that he is the one that has to live with the symptoms; I get that his life is forever changed; I get it! What I want him to get is that we are stronger together than we can ever be apart.