A "Difficult" Question
 

How do we all cope?

We are, where we are, so lets share our individual coping strategies:

Mine is "distraction":

Obviously as a man my favoured distraction would be to have sex all day, every day but fatigue and a lack volunteers make that an unrealistic strategy!

So realistically:

Work as much as I can.
Be alone as little as possible.
Keep busy.
Try to help others whether PWP or not.
Be gregarious.
Be passionate about everything and anything.
Fill my head with my favourite songs.
Sing......................

Whats in my head this morning:

Do me wrong, do me right,
Tell me lies but hold me tight,
Save your goodbyes for the morning light,
But dont let me be lonely tonight.

Say goodbye and say hello,
Sure enough good to see you, but its time to go,
Dont say yes but please dont say no,
I dont want to be lonely tonight.

Go away then, damn you,
Go on and do as you please,
You aint gonna see me gettin down on my knees.
Im undecided, and your hearts been divided,
Youve been turning my world upside down.

Do me wrong, do me right (right now baby),
Go on and tell me lies but hold me tight.
Save your goodbyes for the morning light (morning light),
But dont let me be lonely tonight.
I dont want to be lonely tonight.
No, no, I dont want to be lonely tonight.

I dont want to be lonely tonight


Chris

Chris,
 

I went through the same feelings as you when I was first dx'ed, always had to be doing something, (unfortunately with my sexual prowess that meant I needed to fill the other 23 hours and 58 minutes of the day).

As time went on, acceptance grew, and I focussed on what I believed to be important, i.e. family. I found PD to be a great leveller and I now have the ability to distinguish the important from the irrelevant.

At different times my anxiety grows and my attitude changes, but anxiety accomplishes nothing for me.

Are you on dopamine agonists and if so are you handling them all right ?

Take care,
Neil (aka Aftermathman)..

Hey, Chris, I love that Isley Brothers song but I'd rather start the day with their "Work to do"!:D

Coping is sometimes impossible, when so many different things pile up and combine to make us doubt whether life like this is worthwhile. But then you somehow get better and the shoulder pain you had for months disappears and your balance seems to be much better and you become optimistic again.

I find that, regardless how bad I feel, if I go to a party or some other social get-together, I always end up feeling better.

The one thing that consistently makes me happy is music and dancing. I find that my sense of balance fails me in dark lighting conditions, but at weddings, where the lighting is pretty good, I can dance for hours and I feel much better and less of a parkie the next day.

Hugs
Teresa

Ooops! I stand corrected...this song was actually written by James Taylor and the Isley Brothers' is only a version of it - but a very good one, of course.

coping
 

Chris

It's been almost 2 years, since my diagnosis and
I fear I am still not coping with this awful disease!
I never thought I would be on an anti depressant,
but, after quite some time of holding onto the prescription
I was finally convinced to fill it. I must admit that I do
feel better most days and at least life isn't completely
unbearable any more.

How do I cope? I finally found some support talking
with pwp on line who have become friends (because,
alas, I am still "in the closet" so to speak. I cont.
to work and feel my job keeps me going and fear
the day that I can no longer work. I have started
a "Things to do before I die (or no longer can do)
list." I am trying and doing new things.

Love the song.....

Mary

Hi Chris
 

Like you, I feel the need to be productive to the point of being compulsive. That can make me pretty trying for my friends. One thing I found that helped was when a doctor asked me about my family health history. My mother was adopted and had no information about her biological parents, and my father and I have had almost nothing to do with each other.

If you enjoy the internet you might want to start a geneology map of your family. You could get a subscription to Ancestry Online or Family Treemaker. There is also the GenWeb project in each state and county. Some are better than others and will make available the names and dates of deaths of those in cemeteries, You can order both birth certificates and deathh certificates online or if you find yourself stuck, you can find a professional geneologist in the area you are researching that will look for information on your ancestorss for a fee.

I found my mother's 1/2 sister who is living in Alaska. I contacted her and she was unaware she had a half sister, as my mother[s biological mother had abandoned all her children ( a son and a daughter, legally and my mother without out benefit of marriage.) I wish I could afford to bring them together, they are both deaf and cannot talk on the phone. My mom hates to write and will not learn how to use e-mail. I e-mail my aunt and have sent her pictures of my mother and she has sent pictures of herself to me. My children took a look at the pictures and said, "Mom, that is an older version of you. The resemblance is uncanny!"

Try joining a choir. It doesn't have to be a church choir, most communities have a community choir that sings at nursing homes or assisted living centers.

Take up a new craft or hobby. Learn to paint or make pipes. You must look at this time as being an opportunity to explore your creative side.

Try not to become introverted and look outside ou your "box" to see where in your community or family you can make a difference. If you need antidepressents, by all means take them. Muscle relaxantants should be considered as an option to increasing your dose of sinemet as, although some are addictive, the long term effects may be less than Sinemet.

Well, it is morning and time to walk the dog.

Sincerely,
Vicky

This is a good question and one that needs to be asked every now and then.
After having PD for 10 years now, I don’t “cope” with it. I prefer to live with it. By that I mean I try to live my life as normal as possible. From reading and learning about this disease, I know what is going on in my body. For the most part, I pretty much know what to expect in the future.
Just turning 50 last week, I am way too young to let this disease take over with out a fight. So I go do pretty much what I want. Sure, there are some things I can’t do anymore. There are a lot of things I should’t do but still make an honest attempt to do them. Do I have bad periods? Yes. There are days when the meds don’t seem to work. A lot of sleepless nights that seem to go on forever. Days where the muscle rigidity makes it hard to move and days that reaffirm having PD sucks.
I’ve told myself that this is the way life is going to be from now on. Get over it. I fight through it and get on with life. I just go at a much slower pace these days. I could very easily sit in a corner and rot but what fun would that be? There is too much to do and see out there. PD is a part of my life now. It’s not going to go away.

Don’t “cope” with it, Live with it.

GregD

"Cope"
 

Greg

I see you don't like the use of the word "cope", perhaps "manage" would have been better but iether way I guess your reply could be summarised as:

Fighting thro' it.
Living with it.
Doing things at a slower pace.
Not giving in.

Good reply thank you,

Chris

Vicky

You havn't heard me sing, people in Nursing Homes need help not punishment!

But thank you for your reply it was varied and constructive.

Chris

Sounds like you found a way!!
 

A good sence of humor works great!! I see yours is intact.

Vicky

At some point I had to accept my lot..Theres nothing I can do about it

What allowed me to accept it is the love and support of my fellow parkies, and the fellowship and the 12 steps of AA..All I can do is the best I can do under the conditions of the day

One of the passages in AA literature that has helped me is this one:..

"We are granted a daily reprieve contingent on our spiritual condition"

A bit of denial.
 

Thank goodness for the arts. They put sounds and shapes and words and pictures to the feelings we struggle to express.

I still feel that nature is playing a cruel and unfair joke on everyone with an illness like PD and MS and ALS and so on, and I am still offended and affronted. But cruel Nature is also so very beautiful. To be, as we are, as integral a part of nature and of the earth and of the universe as a tree or a blade of grass or the sea is a joy that fills the heart and mind to the point of bursting. I'd sing if I could, in celebration.

I'm elated to be alive, and I'm not going to let PD ruin my life. I'm so used to having PD by now that I try to keep it in the corner where 'things I don't want to dwell on' are bundled up in long term storage. And then I go about trying to have as much fun as I can, reading, watching birds, enjoying family and friends both off and on the computer. Thank you for many, many good 'conversations' dear forum friends. You are a part of the joy and the fun.

birte

I think I cope the best with exercise. If I get outside and walk in the sunshine, I feel like it's been a good day, especially if I can walk with a friend. I like it that I can go on a long, tough hike in the mountains, and I especially like talking about it afterwards! Getting on the treadmill and working up a sweat and a high heart rate makes me feel normal. I imagine it will come to the time when I shuffle down the driveway and back on a good day, and hopefully will still feel like I accomplished my best.

Wendy
 

I am dealing with things quite a bit like you are. How long have you been diagnosed? Thank you for the input.

Caya

Coping
 

I've never coped well with PD. I guess because I feel so $h!ttey most of the time. I can't remember the last time that I was laughing, singing and "in a great mood". All the drugs that i've tried for depression, pain and PD in general only allow me to function outside the "assisted living" venue. Nothing that I've taken has ever made me feel "euphoric". I lead a dull grey, dysphoric existence, bereft of anything to look forward to. I sleep a lot and am dissappointed when sleep is over and it's time to get up and face the world again. I am forever guilty of the effects that my dysphoria, dissattachment, and overall disability are having on my family.
I want out of the game of life. I wish that there was some kind of drug that would really "do the trick" of making me feel like living again, something that would quell the pain and start me wanting to live again. The only reason that I haven't (and won't) off myself is ,as long as I breathe, a good check comes in at the end of the month.
SO much for coping. Now, i've alway's been honest, so I'm not going to tell it like it isn't. I don't want pity; so many others need it more than I do. I just can't cope, but I must keep on going. I thank my lucky stars for what I do have and the "normal" years where I was a "happy, well rounded individual".
Sounds like self pity, but it's not. I can't cope well, but at least I can fight the monster with my broadsword and my blunderbuss.

Thank you Birte that's a wonderful reply.

chris

I agree Wendy, I missed walking (particularly in the sunshine) off my list of distractions. i don't walk anything like as much as I used to (I live on the edge of King's Forest in the UK, so plenty of lovely walk available) but I feel feel liberated and so alive when ever I do.

Thank you
Chris

Great question...great replies!
 

What a heart warming read.All at different stages of this condition,yet predominantly upbeat and encouraging.
And although I personally try to remain positive without relying too heavily on the support of others,there are very definite influences in my life,from people who either make it a Great PD day...a mediochre PD day or a damn bloody difficult PD day.Let me illustrate further.I think we all have experienced the horror of the "Parkinson mask"...you know..the moment when our facial muscles decide to mutate into that "sandwich short of a picnic" expression.The worst of it is,your brain forgets to let you know that that is your expression for the next half hour.So..when everyone else is rolling on the floor,in pleats at someones hilarious joke,you are the only one sitting there like a wax work from Madam Tussauds,not blinking,not smiling....just sort of stony faced and out of it.
Well...the folk who make it a Great PD day will leap to your aid by feigning an emergency situation and whisk you away from the scene in a jiffy,and sit with you patiently until the said muscles are back in action.
The folk who make it a mediochre PD day will slap you on the back in a friendly gesture and kindly make excuses for you "not getting the joke"
The last lot of sleazeballs...the ones who only have thoughts for themselves will wait for a lull in the laughter and then in a loud voice will boom
"What`s eating you..you frosty old fart....have you NO sense of humour!!!"
leaving you to mumble your own reasons for sitting there devoid of expression.
I rest my case.Surround yourself with people who ...like the saying goes;
"will sing your song when you have forgotten the words."

And speaking of songs Chris...at the minute the one closest to my heart is;
Maria McKee ...Breathe.

Both lyrics and music are divine...and if you er...um....ever get chance to do what your heart desires ALL DAY...:wink: then this is the song to have in the background .

Steff
x

"ALL DAY" now there's a real distraction........................

Thanks Steff you never fail to entertain.

Chris

good question
 

Chris,
Excellent Question and great responses. I love my work and I work like crazy to forget/cope with PD. I sincerely believe that its Mirapex-mediated addiction (anyone else with work addiction?). I hesitate to go to family gatherings because I am tired of people feeling sorry for me. So what do I do? work, spend time with kids, read, listen to music and talk to a group of selected people who understand me. Some days its very lonely and depressing but so far managed to get over it with or without drugs.

Girija

CS, old buddy, I think it's time for you to start considering DBS surgery. You're not going to get any better, unless some miracle drug is found within the next couple of weeks (then tested for 10 to 15 years...), so you might as well face the obvious.
I know in the US it's always a financial issue and I don't know if health insurance companies cover this very expensive surgery, but then you could try it the sneaky way: become a citizen of a country with free health care systems. Do you have any grandparents born in a EU country? As far as I know, the grandchildren of European-born parents/grandparents are now eligible for citizenship of that particular country.
I know American retirees of Spanish parentage, who have attained Spanish citizenship, but live in the USA (mostly Miami and Tampa) and come to Spain twice a year for doctors' appointments, testing or surgery, get expensive prescription meds, and then go back to their homes in the USA. With air travel becoming cheaper, more and more of them follow this procedure.

Cs, I wish I could send some of my bubbling-over to the point of silliness joy to you. It is not fair that I seem to have an excess, which has to be some kind of chemical imbalance, as your sadness also must be.
It is certainly not religion or willpower or lack of sensitivity to the suffering of others, or lack of pain that cause the euphoria I feel. I only wish it was transferable, or that I knew how to share it.
This is horribly mushy, and it sounds like I'm boasting of my wonderful attitude, but I'm going to post it anyway, hoping you know that I mean well, and that I'm mainly angry at the unfairness, the randomness of who gets to have what.

All the best,
birte

Not that it won't get worse...
 

Someone I read in a theological connection, perhaps a book reviewer on Amazon.com, said to relax and throw away all your self-help books, because your life is not about you anyway, it's about helping others. I thought of ol' cs when I read it, because the dear old thing does help when he can.

Seven months ago, I had my left hip replaced, which both made me able to walk again and left me with a lot of healing to do. I have never been brought so low, but it was still worth it for the lifting of the burden of that agonizing deep bone pain. Now I'm coming to myself, down to my last pain management tablet and in my right mind again, if my mind can ever be said to be right. Of course PD got worse in the meantime, but someone told me this is the only life I get. I've taken up exercise, and I love it for the first time in my life.

I try to stay optimistic and hopeful as a discipline for my mind. I get a lot out of my religion that helps me live every day the best I can. I have depression under control with mental habits and medication, not that I don't get down in the dumps sometimes. Down isn't the same as clinical depression. Let me remid y'all: Clinical depression is a physical illness often associated with PD, and not a moral failing. So see a doctor qualified to diagnose and treat it, learn all about it just like your PD, take your meds right along with your PD meds for the rest of your life, checking in with that doc 2-3 times a year or so, and accept it all as the way things are. Then get on with your life.

After cognitive changes set in (and this is NOT dementia, just a faulty clutch even though all the gears are there) what you can do will change. Enjoy it. Keep singing so your voice stays strong. Exercise. Eat well. Dance like nobody's watching. Stare your fears in the eye once a year or so, but as a practice dont think too far into the future, not even if you're as pious as a saint. So when it's time to be distracted, I favor Bubble Trouble on my Mac's dashboard. :D

Jaye
dx January 1999

song
 

And speaking of songs Chris...at the minute the one closest to my heart is;
Maria McKee ...Breathe.


Great song, Steffi!!!! I had never heard it......very beautiful.

Mary
;)

I forgot what thread is about but here is my answer.
 

I try to keep busy and happy too. To me the greatest blessing would be happiness over everything.
I still work, love my job and I am still good at it. I swim laps about 3 times a week for exercise and that keeps my mood up and my shape down. I also have discovered a hobby which has me totally absorbed-lampworking. This is the art of working with hot glass to make beads, pendants, sculpture, etc. I choose to not think about what will happen when I can't do it anymore.
So, I am very busy, which is hard, many times I am extremly tired, but I have chosen to keep myself this busy, so I can't complain. I haven't figured out yet when to just stop so I won't overdo. I have always been a very active person.
I also babysit my granddaughter 1 night a week, to give my daughter a relief and because she is so much fun.
I still get depressed tho and of course it must be from lack of dopamine, that is how I explain everything it seems, everything is tied to pd.
The next thing I am contemplating is retiring. That way I won't be so tired all the time. Sounds pretty good at the moment.

Serotonin
 

Libra

My understanding is that depresson (and anxiety & panic attacks & low stress tolerance) in PD come from us not producing enough Serotonin, due to damage to the neuro transmitters in our brains. This causes Serotonin reuptake. There is a class of drugs called "Serotonin reuptake inhibitors" that can help manage this problem but as with all drugs they come with potential side effects including addiction.

I personally decided I was taking enough drugs to boost my Dopamine without adding these as well. Like you I distract myself by staying busy but also, like you, find it is a hard balancing act against the resultant tireness. I also do all I reasonably can to keep my stress levels down. If I find myself getting stressed, anxious or depressed I play music and try and lose myself in the lyrics of the songs. Another simple thing that works for me is I suck a sweet.

I hope some of this helps.

Chris

sweets do help
 

I do take an antidepressent and just recently have switched from effexor to cymbalta which seems to help. I have suffered bad depression for years and I don't care how many pills I take, I will still add an antideprressant if it helps. There is nothing more devastating than a disabiling depression. As to having a sweet, that does make you happy. As does music, working in garden, cleaning house, going to movie, buying a new plant, taking a bubble bath by candlelight, etc. I once made a list of everything that made me happy and whenever I get depressed, I will try and do something on the list. Thanks for your help Suffolkchris and this is an interesting thread. It's good to hear what helps other people because this is such a life changing disease. It's hard not to get down about it and what makes it harder is most people don't understand it, so your audience and support group is very limited.

Libra
 

Cleaning the house makes you happy?!?
Now there is something that could drive me to take anti depressants.

You make an excellent point though "most people don't understand ".

What's wonderfully unique about coming on here is everyone understands......

this, that & everything
 

I've been absent for awhile ... just busy ... but it is posts like these that are needed more than ever, for all of us, in every stage of the disease, but more so for the newbies. We've all been there before and know how it feels.

Like a support group that you can choose to attend or not, I choose to visit this site because of the shared feelings, the sharing of different coping strategies, and the outpouring of love and support that is given. I'm somewhat familiar with support groups (my dad joined plenty when my mom died at the age of 40), but what stayed with me the most was that each support group was geared toward different personalities. He would find one group that only wallowed in self pity, another that were avid book readers or enjoyed playing cards, another that included family outings, and yet another that enjoyed travel. Each group offered each individual something different.

The difference in this site, however, is that each thread, each post, and each reply hit all of us differently. Many are into research topics, others are interested in alternative medicine, still others into politics and religion. The cool thing is that you can find "your" type of support in any one of these threads.

I LOVE THIS SITE and would not be who I am without it. Hands down.

On to another entirely random topic ... if any of you are looking for some comic relief, there is a comedian out there who has a DVD called:

Jeff Dunham - Arguing with Myself

This DVD is hysterical, is not politically correct, is not offensive, and is just downright funny. There is no way to explain this comedy. It is something that must be experienced. If anyone is interested, it is available on Amazon.com. New ones cost $9.99 and used DVD's are starting at $8.81.

If anyone on this site can't afford the cost, I'll do my best to ship a copy to you personally. I don't care if I get 100 people who e-mail me! I'll simply begin compiling a list and start at the top.

My e-mail address is:

proudest_mama@yahoo.com

Lastly, two more thoughts:

1) If anyone DOES order their copy and/or has seen it already, please post what YOU thought about this DVD.

2) Should we consider having a thread for different movies, different music, etc. that motivate, inspire, or just offer comic relief?

As usual, I'm always open to suggestions and/or comments!!

Terri