.. Than eventually leading to our bodies weakening to the point that we will die of loss of the use of autonomically controlled muscles by the diaphragm or heart failing. That is what gets us, if we are lucky enough to make it through the gamut of other things that can cause our death from the eventual weakening of the voluntary muscles, examples; choking due to the loss of the ability to swallow correctly; falling and breaking bones and unable to heal because of a weak immune system caused by years of inactivity, poor diet, or any number of reasons, and thus inviting the adventitious growth of bacterial, viral, fungal vectors; suicide due to deep depression, or the inability to "handle" the horrible constant dyskinesias and dystonias and general constant neurological pain due in part to the conditions previously mentioned; poor balance and lack of ability to run from imminent danger from motor vehicles or heavy falling objects; drowning from inability to move when a sudden "off" hits us, even though we think we are in safe waters, and all kinds of conditions from bradykinesia such as trying to find our way out of a burning house or any number of life threatening conditions that demand quick action ( don't laugh, this is for real). Those whom suffer dementia with PD are at further risk of all the above factors and more.
NO, NO. PD is so much more, and it all has to do with loss, and loss increases stress, and stress exacerbates PD symptoms.
Loss of employment leads to poverty (if you aren't prepared insurance wise), but even then one drifts through life at the termination of employment when PD hits you when you are young. The inability to take care of dependants financial needs leads to loss of self esteem and can alter behavior very much to the detriment of all of those in ones life, self, family and friends. Obsessive compulsive syndrome of all sorts may accompany this, leading to further breakdown in family relationships, and then one finds themselves "abandoned" or "marginalized" within their former sphere of influence, which just adds fuel to the flames. Divorce, loss of emotional support, love, and all the other things that the human psyche thrives on eventually leads to clinical depression and this leads to indifference which can lead to neglect of personal hygeine and just make one a real pitifully tragic character. The only way out of this maelstrom is to talk to others who are having the same problems and have developed some kinds of coping skills. PWP who are advanced and who are suffering intensely from the parkinsonian syndrome, will still have unresolved issues, but they are often better giving advice than anybody except for a very small minority of good neurologists and/or psychologists whom have worked with PWP for many years.
For instance, my wife has had it that I can't be the father to my children that I once was, don't go anywhere with her because she is embarrassed of my strange movements when dyskinetic; lay in bed at odd hours making myself distanced from my growing up family, and a whole lot of other issues that i'm sure I share with other young PWP with families and homes to deal with. If I wasn't financially prepared as I was, I'm sure she would have ran several years ago. So, I have parkinsons disease (10 years with several years bad symptoms). All i see is a continued degradation in my quality of life, continuing loss and "marginalization", where I am an unwanted burden to my family, an embarrassment (my oldest boy makes sure i'm out of the way when he brings friends home like i was the elephant man or something, yet outwardly at first glance I appear normal and not bad looking by any means, he just doesn't want his friends to see me get up and shuffle around and have to endure the "what's wrong with your dad questions"). My wife has taken to beating up on me emotionally, any little thing that I do or say that she used to ignore is now a "big deal"; it's a product of her frustration and overworking without proper holiday breaks, i forgive her because i can imagine how she feels.
So, i have just related way too much about my own personal situation, just so i can share with you, my PWP friends, that i am in no way leading a charmed PD existence by any means. I'm not embarrassed to say so either because i want you to know that all of these obstacles , although life shattering, can be coped with, one only needs the patience and courage to defuse tense situations that develop which are definately caused by or related to having PD. One MUST make it easier on themself and decrease the stress level in ones life, if you fail to do this, loss will just continue untill you absolutely go nuts and go off the deep end. and that's a very bad place to be in. PD really can be Hell on earth, sometimes i wish that all the doubting Thomas'es, all the Rush Limbaughs', all the people who think that PD is a cake walk could be struck with the worst PD symptoms all at once for just for 10 minutes; if that could happen, i think we would get funding for a cure el pronto!
Thanks for reading, and happy trails to all of you. cs

cs, I don't know what to say, but I feel as though I need to say something. PD is a horrific disease, full of undesirable side effects caused by both the disease and the meds we take.

I feel your pain and understand your life far better than ever before. It is sad that so many PWPs end up suffering at the hands and voices of their families...those people who should be the ones providing unconditional love and support through out everything...but alas far too many end up in divorce or ignored as you son appears to do.

I am sad for you, but we on this forum are here for you and you know that or you wouldn't have posted such a heartfelt thread.

Lots of to you today.

I will be thinking of you all day today and tomorrow and the day after, and the day after that.

Dear cs, life is hard enough without PD. PD is a cruel, sneaky illness, and only PD sufferers can know how cruel it is. Only we know what PD takes from us, what it does to us, body and soul, what it is like to be in a body that has PD and observe what it does to our loved ones to see us deteriorate, slowly and unstoppably.
And the cruelty is manyfold when PD strikes early. I am so very sorry that you don't have the support and the consideration in your home that would help your heart feel lighter, the comforting that would alleviate the stress.
If you were old, the thieving monster would just make your last years harder and fewer. The young are the real victims. Life is amazing and wonderful and beautiful, and life is so cruel and so completely unfair.
Your son needs a good, angry talking to. Remember the Grimm story of the young couple and the grandfather? They made the grandfather sit by himself by the stove to eat, because he trembled and spilled, and he had to use a wooden bowl and a wooden spoon. The young couple's little son observed it all and asked for a knife so he could whittle. "So what are you going to make, my dear?" laughed his parents.
"I'm going to make wooden bowls and spoons for you to eat from when you have to sit by the stove to eat." And the grandfather ate at the table with them after that.
Your son will get old and infirm in time too, but long before that, he will feel awful for having felt ashamed of his father. He still has time to realize that he is being an inconsiderate clod.
I meant to comfort, not sure if I have, but all the best, cs,
birte

my dearest cs,
I was thinking about the lil one.
who recently died with PD after only 8 years of a terrible case of
the PD monster...

Lil spud hardly ever complained, but one day she said to me during a phone conversation -Tena she said, I hate PD, and I told her that is was okay to hate it - because there was absolutely nothing to like about PD...
Then I tpld her - just dont hate yourself for being ill, because you are not a disease dear lil one you are a a creative, smart young woman, doing the best that you can...

If the person with Parkinson's is constantly apologizing to his family for his disease or is full of self pity, the family will be trained to think of Parkinson's disease to be a embarrasement to the whole family.

Although some children do not have the maturity to not be pressured by their peers to be ashamed of a disabled family member, most children love their parents and will not be embarrassed by their friends reactions to what they see. By not constantly feeling the need to apologize for what you are but teaching your children that you accept what you are and expect the same from them, and not hiding in your room to save them from the embarrassment of having a disabled parent, you will teach your children how adults can handle the unfairness of life. I have had PD for 18 years. I have always been to every event my children have been involved in, such as football games, plays, debates and band concerts. I know their friends and welcome them to visit my home. I do not view myself as a person to be pitied or frightening, but as an adult who can teach my children how to live with a disability with self-respect. I also do not hide in my home and am not afraid to use my walker.

Some view using tools to make life safer and easier for disabled persons not as helps but as symbols announcing their disability to the public at large. I look at my walker, cane, plate stop (to prevent food from sliding off your plate, espeicially peas by giving a wall on the side of the plate to push the food onto the fork), extra long shoe horn, etc. and take them to the restaurant so I won't be stared at. If someone does stare, I smile and give them a short lesson about PD.

I am not saying living with a disability is a bed of roses. I am also not saying it is not fair that I am the one experiencing it. But as long as I have been diagnosed with it, I am going to continue to live my life with self respect and the knowledge that I can give up and let myself be bitter and cut myself off or I can look for an opportunity to find a way to use my intelllegence to make the best of my situation. That is what free will is about. Making the right choices. Treat yourself with the respect you are due and others will follow your lead. What a great lesson to teach your children if they are faced with a similiar challenge in their adult lives! I ,myself, learned it from a 10 year old girl with juvenile rheumatoid arthritis when she wouldn't give up.

Love,
Vicky

What a great post and replies!

Like any disabling disease a person can control how they are going to deal with the disease both physically and emotionally.

Indeed the hardest things to deal with are many of the points mentioned already........
families reaction
cost of health care
the way your incapacity has altered the lives and dreams of those around you.
standard of living changes

These are definetly for me the hardest challenges to deal with!!!!

The answer I gues is remain positive!!! Face each challenge head on with gusto, talk it thru with family and friends in this way maybe we can instill strength in other loved ones that we all can cope!

Vicky
I heartily agree with all you have said. PD is no bed of roses, but you have to keep going and do as much as it will let you. You are doing well after 18 years of PD. You have to take each day as it comes, and undertake as much as you can.
I thought I was doing well his week, after 16 years of PD, running in the garden with my 2 year old grandson. However, I tried to lift him onto a seesaw, overbalanced and fell doing so, nearly flattening him by falling on him. I should not have risked it, and won't try lifting him again.
Before we moved to the south of England, 20 years ago, my next door neighbour was a fantastic role model. In World war one he lost an arm and a leg, aged 18. Was he bitter, not at all, He attempted everything possible, he learned to drive at 8o, when others with all their limbs are considering giving up. When he got his licence, I asked him jokingly what he was going to do next. His reply was " I have booked dancing lessons"!!!!
He was always so cheerful, it was a boost to my mood to see him unbuckle his leg and lay it on the grass then dig the flower borders with such enthusiasm sitting on the grass. The saddest thing was in his last years he suffered Alzheimers, and was no longer the person he was.
Ron
PS Who was my neighbour on the other side?
Albert Pierpoint, the last British hangman, before the death sentence was removed in thre UK, who hung over 400 people in his time.

there are a million stories in this wide wide world that can illustrate what we mean to say about most subjects and this one is mine.


Years ago when my sons were in their early teens they had been out playing hockey with some friends and had gotten into the usual hockey 'fight'.

One came home, the eldest with a large black eye and swollen cheek and whe i asked him through his tears what had happened he said,'you should have seen the other guy', then he grabbed at me and cried his heart out.

Well i got mad and being a woman my first reaction was call the police and see what this was all about. I didn't because my son told me it would make it worse and I just let it go.

But the family of the other boy didn't just go and about 11:30 that night I went to the door and opened the inside door to see a very large man just raring for a fight standing there. He roared at me asking if I had any idea of just what my son had done to his son and what he was going to do about it. I was petrefied with fear and asked him what he wanted me to do about it and that it was a kid fight and not to be so upset.

He palmed the door with his hand and bellered that he would punch my bloody head off if I didn't call my sons father. I was so scared at the threat that I tried to slose the inside door when he jerked the outside door open and yelled. come on out you bastardly coward', now I was mad and yelled ,'you want to talk to his father,' well you sob you are looking at him.

He stood there and looked at me and understood without words that there was no father lurking in the background and after a minute his whole attitude changed.

He smiled and apologized and said he was sorry about the name calling and I was right the kids should work it out amd he turned and left. I never said another word I was so scared.

But that taught me that being a woman gave me a far far better chance at life then some men get.

Cs is caught between a hard place and a rock. He is the MAN. As the MAN that guy would have punched first and asked questions later.

Mommys can be weak and Mommies can be sweet and dastardly at the same time but men are strong and expected to be strong for their entire life unless thay get old and then they can be as we are expected to be but then they are treated as senile long before they are.

This world uses men and eats them up when they are not as we expect them to be.

My generation supported this as a theory to raise our sons by and I apologize for it as I did it as well.

Sorry guys

cs, you have described PD without the mask. Yes, that's what happens and that's the way it feels.

Vicky, you have described what you have been able to do to live with dignity despite PD. Yes, that's what happens and that's the way it feels.

Ideally, I would give cs's wife a little more maturity from the outset, and I would applaud Vicky's recognition that her ability to bear up is something special. I know you both, and I know cs is up sometimes and sometimes Vicky is down.

Most of us live between the two situations we read about above, and we all try to follow the examples of Carolyn, Birte, Tena, and boomer (who had responded at the time I wrote this)in consoling and encouraging each other. But we don't know all there is to know about the situations.

What am I trying to say? Oh gosh, I guess it's that my heart goes out to all of us. I posted a thread with my story of how taking care of myself helps, to encourage others, because the measures I mentioned do indeed work if one finds it possible to follow them. But never, never should we blame ourselves for being sick. I've seen families that were supportive, and I've seen marriages break up at close hand because of PD. I've been pampered, and I've been blamed for things that were absolutely not within my power to change, and then scolded for trying to explain my limitations. I've been treated like I was crazy for asking or a ride to a night meeting due to my perceptual and reaction time problems. I've watched my crochet hook stop in mid-air and had to wait till later to work on the gift for a grandchild I haven't seen yet because of PD. I usually manage to stay fairly upbeat, but that doesn't mean I don't know how you feel or haven't sat with someone who has been through the same thing.

Yeah, I feel for all of us. cs's writing is quite supportive for us, I think. Oops, gotta set that timer. I have 45 minutes left on my pity party--for that's what this is--a limit set by a doc I know. Maybe your limit is different and you have a good long one coming, I don't know, but we're here for each other whenever.

Jaye

Although I understand completely what cs has said, we shouldn't pass any judgment on his family. I hope my daughter never reads this, because I want to share something with you.

When I crashed and burned after 4 years of PD and trying to maintain my same lifestyle and job, my oldest daughter took me to lunch. Now that was a task in itself. I refused the wheelchair as much as possible, soo I took teeny babysteps (about 2 at a time), couldn't cut up my food or hold my drink, and was MAJORLY depressed. Anyway, she wanted to take me to lunch.

We went to this little tea room (where you get 2 itty-bitty muffins and dare not ask for more!) where the atmosphere was private and expensive. After struggling through our meal, my daughter jumped into the topic of what my future held. She proceeded to tell me that she and her hubby would pay for the best assisted living or long-term care facility that money could buy, but she just could not take me in to live with them. She continued to lament how her husband's grandmother lived with them as he was growing up and how awful it was. Just what I needed to hear!

I went home and cried for a week. Then I later realized that she was just being straightforward with me, which I believe motivated me to get out the hold I had dug for myself.

I have had PD for 12 years now - and even resorted to exerimental brain surgery in an effort to beat this malady. I can't "beat it," but I can certainly "keep a tight reign on it."

And please understand that I am not scolding cs or saying my attitude is always positive. I think about jumping off a high bridge about 2-3 times a month. Then I ask, "What good would that do?" The id in me replies, "Well, at least I won't be a burden to anyone." to that I say "El torro poo-poo!"

That's when I use Psychology 101. If you want to get out of the dumps and have a positive atittude no matter what - you have to do 3 things:

1) Forgive yourself
2) Forgive others
3) and go help somebody.

It works! When I am on that imaginary bridge about to jump off, I start thinking, what about that child born with no legs and no arms that goes around giving his testimony of how "blessed" he is? What about those that have no family and have a chronic, disabling illness (and I mean NO family!)? And I could go on.

"Attitude" sounds a lot like "Atta way" - think how much worse it could be. And the more frustrated and negative we get, the more miserable everyone around us becomes. (I am not saying anyone here is negative, but to be truthful, we all go there at times.) Try to avoid those "pity parties" where you invite me, myself, and I. Caregivers don't know what to do with us when we go there.

My life is definitely not what I imagined it to be. I wanted to do so many things that I know I can never do. It may seem unfair, but it's life. And if you believe in divine intervention - say a prayer or two. If you would rather think about good vibes, send a few of those your way. And keep repeating - "It could be worse," and "I've been given thhis load for a reason, so I must be able to carry it."

Hugs

Peggy