I found this in my file. I'm not sure where it came from, but I thought it worth sharing:
As PD progresses, patients may have difficulty in adjusting psychologically to the challenges that PD may present. This can result in problems not only for the patient, but impact on others close to the patient. These difficulties can include:
• Persistent high levels of anxiety
• Intrusive thoughts
• Body self-absorption
• Social withdrawal
• Inability to tolerate frustration
If problems such as these persist, they should be discussed with a doctor. Psychological services may be helpful in resolving them. It should be emphasised that adapting to a chronic illness can be a difficult journey. The fact that one is having difficulty is not a sign of character weakness or failure. Facing the problems and seeking help requires courage and resourcefulness.
• Changing dynamics within a relationship
Parkinson's can bring with it many changes to the personal circumstances of the person with Parkinson's and of their families. Role reversals may occur and this can create stresses. For instance, the person with Parkinson's may have been the chief breadwinner and have had to give up their job. The family may be surviving on a reduced income, or the partner may have had to take on responsibility for being the breadwinner. The partner may have to take on cooking and other domestic tasks that the person with Parkinson's was responsible for. Partners can often feel overburdened with the additional roles they have to take on and the person with Parkinson's may feel that they have no role. This can lead to hostility, resentment, and feelings of loss and powerlessness.
• Problems with communication
Parkinson's can affect all types of communication – verbal and written, facial expression and body language. The person may find it hard to initiate or maintain conversations if their speech is affected. Misunderstandings may arise because of the lack of facial expression – a partner may think someone is cross or annoyed about something or uninterested because they have difficulty with facial expression.
Depression can be a very common feature of Parkinson's and can have a profound effect on relationships and lead to social isolation. Mood swings can also occur as a result of fluctuations in dopamine levels in the brain, and may be linked to the timing of drugs.
• Social isolation
Some people with Parkinson's tend to withdraw from society and become very introverted. Loss of social standing within the family group and work environments can lead to feelings of reduced self-worth and reluctance to socialise. People with Parkinson's can be embarrassed by their symptoms. If friends are unsupportive or don't understand, or if reactions from members of the general public are not positive, this situation can be made worse.
Some people withdraw from social life as a result, and this can be just as isolating for the family members as it is for the person with Parkinson's.
Ray, you have described my situation and feelings as well as those of my partner/carer with such accuracy that I suspect you may have psychic powers.
My problem ( or rather one of them) is where to go for help. I have not been offered couselling , just drugs and a limited amount of physiotherapy/speech therapy.
As you say, the social isolation , (and I admit that is mostly self inflicted) is one of the most depressing things for me (and my partner) .I have never been a "party animal", but we did enjoy theatre going, holidays, visiting friends or a simple country walk/picnic.
I am not ashamed of having pd, but I am fearful of making arrangements - just in case I cannot keep them - either because of physical or emotional reasons. My consultant is very understanding and advises that I do make arrangements for social outings. This does however seem to be to be putting a lot of pressure on friends. My dear friends try their very best to be understanding but it is an awful lot to ask of somebody to recognise absolute panic when all they can see is the outward shakiness.
Coupled with this is the (my) diminishing powers of concentration. I can no longer lose myself in a book or a DVD.
And again, as you say, the diminishing ability to do what used to be boring but necessary chores , and the need to have to ask for assistance ( and pay for it!) is embarrassing and humiliating.(and costly!)
As for the necessity to stop work - need I say more?
Just had to reply,apart from the communication aspect,everything you have posted encapsulates the situation I am in.To be honest,sitting here reading it,time and time again,I am staggered at how spot on the summary is.
To be honest,this situation had occurred long before PD,in my case.Parkinsons then just set the final seal on everything.The personal relationship strain,I have highlighted here not long ago,is the conclusion of all that you have mentioned above.
I see the despair in my Wife's eyes,my family are powerless and frustrated,as my own frustration and mind set result in a constant stalemate.
So many caring people on the forums have put up with my woes as I express my problems sometimes to extremes.That in itself makes me despise my self further.At the end of the day,it is all down to me,but it is so hard.I feel no self worth whatsoever,but will stop there before going any further.
I have had all the psychological therapy help,which made no difference,referred on now,PD is at the back of the cue in that department.I have been trying to save my marriage,but basically,I give up,just don,t have the motivation.A sort of ,"If that's the way you feel then f*** off then"mentality. Sorry about that.
So many people have tried to help this lost cause.However,somebody I was chatting to yesterday said these words to me ,"Make the best of what you have got".It is so true,I have pinned these words on my wall in a final attempt to make good of what I have got,starting today,before all is lost for good.
Thank you for highlighting this"Relationships" issue ,I think it is a lot more common and important than most people realise,or indeed admit.
All the best
It was the distress written on peoples faces that stopped me. Few venture towards you and when they do it's always a drunken sob about how they love you. Then there is the "it could be worse" brigade. I just thought I was upsetting folk, so I stopped going.
When you stop going you stop getting invited.
The longer this continues the harder and more awkward it all becomes when an invite finally materializes (usually a funeral) the easier it becomes to latch onto that human trait for taking the line of least resistance STAY AT HOME and send a card.
Mrs Eck is of the same opinion, my darling wife and now carer will tell you she feels like it's turned into living in a goldfish bowl. Plenty of looks, silence is deafening. She has to face the people who look at her while talking to me, or if I ask a question will look past me and tell her the answer. Or if we are in a family gathering they will wait until I leave the room before asking her how I am really.
If anyone can tell me any +ve way I should look at it, I'll adjust my attitude and give it a go.
Ray thanks for posting this, what a pity you cant remember where it came from because whoever wrote it understands this illness without doubt. It is a great summary of the journey we undertake as the years go by. I can relate to most of it to some degree or other, in particular the bit about social isolation. It also shows what a complex illness parkinsons is! This is very relevant when you consider many of us will live more of our life with parkinsons than without it.
Well done Ray for highlighting these issues because i for one believe they are important to us all.
Hi Ray . Are you sure that you haven't been to my house today lol ..
Have had a particualarly few not such good days . LOGGER HEADS DAYS )
All the things you have mentioned have happened .
Unfortunately my husband had a fall 2 days ago , he was ok a bit sore but of course it takes any little confidence he has which makes things worse .
It's great to have the opportunity to be in touch with other in the same position and that you all know what you are talking about . NOT WHAT YOU THINK IT MIGHT BE .
I will mention it when we go to our next GP appt and THANK YOU .. .
It is a great thread Ray, and reading the posts makes me sad,
I am a lady who lives on her own after a marriage break up after 27 years . Then one year later after this traumatic time of a divorce, I was dx with this dreadful disease.
loving a party and a good night out, I am now avoiding night outs and find any excuse not to go. I am still working full time, but find I have lost my confidence, think people are looking at me.
If I could turn back time and be the person I once was I would. Sounds like self pity I know, but the future looks bleak.
I really do not want to be a burden to my children. After having nursed both my parents through cancer, I know how dreadful this can be and how heartbreaking it can be to see the person or persons you love so dearly, deteriorate and become a shadow of the person they once where.
I do have a lovely man in my life at the moment and we enjoy each others company. As for the future well there isn't one , not for me!
The only positive note I can end on is enjoy the time you have,live each day as if it's your last and treasure those special days.
love PB x
Hi Posh Bird,
Rest assured,there is not one ounce of self pity in what you have just shared here on this important thread.What you have said is real!,is happening!Then in the midst of all your hardship and disillusionment,you have rounded everything off with a conclusion of hope when all seems lost and the future bleak.
I hope your current relationship brings you a future filled with contentment,because a strong shoulder to lean on and share your innermost fears, and also pleasures,hopes and dreams,is something we all need.Especially when pd emotions toss us around like a ship caught in a storm.Or leave us trapped like a ship in a bottle.
The most powerful of storms can be weathered
Even hurt,loss and pain,can subside.
Ships released then from the confines of their bottle
Create dreams inhaled on the swell of hopes tide.
Take care and stay strong,
Socially isolated ,my world in two simple words,
O dear Parkypete
Is this your choice not to go out? If it is then I can understand, what about close friends do they encourage you to go out. Keep posting and take care .
Thank you for the kind words. As we all know this PD can give you feelings of insecurity and wondering what the journey for us will be......I will say no more. Only that I promise to be strong.
Hi Ray of Sunshine, Lovely name by the way,
I wonder if you sent this great piece to the national office and ask them to print it in the next Parkinson's as I am sure many people would like to read it.
I think it is such a good piece I would like to be able to copy it somehow but don't think I can do it from the forum.
As you may know my husband has had pd for almost 30yrs and this describes everything we have gone through apart from grieving for a lost life that we had hoped for even thought we have made the best of what we could, when you are a early onset pwp it is such a large chunk of your life and the problems are so different than if you are diagnosed when your family have grown up.
You are all great both pwp's and carer's and have every right to be a bit sorry for yourselves sometimes my husband and I certainly had our down days and it takes a lot of courage and strength to keep picking yourselves up and kicking these feeling into touch.
Ray, what a description! very accurate but sad to read and witness for me as a carer to my lovely husband.
I remember many years ago, after a spate of friends having to cope with some pretty awful illnessess him saying "How brave people are " Well it's his turn now he is one of the brave ones . The same as all of you .
You are all digging in and getting on with your lives . Although for some in a different way to the life you had dreamed or planned for .
Keep digging everyone . I am getting the biggest shovel I can find ..
Good post Ray, many of the points you bring up are very, very true!
Many thanks ROS for the article you posted, although I have experienced and acknowledged all that is written it is very hard to read it.
I have not been on the forum for ages as my Dad sadly died before Xmas and what with caring for him at home 150 miles away and fulfilling his wish and mine for him to die at home, i now have to get back into everyday life not coping with what is happening to my hubbie and our relationship well what is left of it and trying to be the breadwinner.
At the moment he is in a very bad place again with effects/affects of DA's , i printed off this article in a hope that he would at least acknowledge that this is us !!! but no luck will have to carry on crying alone.
My hope now is that the Duadopa pump that thank goodness we now have been granted funding for ( supposedly Temporarily ) hope hot though, if it works will bring him out of this drug induced behaviour which has destroyed him and his family.
i am realistic that DA's although the main problem is not all the problem and my man and our relationship has changed forever but i am determined that the answer or so the Neurologist suggested is long term care at 54 I do so hope not!!!
No matter how optimistic we have been over the last 10 years this is such a cruel disease.
thanks for listening xx
Dear Bubble, sorry to read of you dear Dad's passing, and all the private turmoil you are going through. Glad to see your name back on the forum again. I wish you and yours all the best.
Thanks Bubble. After your reply on another thread I came to read this one.
It really feels as though we are all the same even though we are all completely different!
Sometimes its good to hear from people who know just what you're feeling even though it can make you feel sad for them.
I wish everyone a better day tomorrow!
Rock on ROS.
In a bizarre almost perverse kind of way, it feels so good to know that you are not alone in feeling alone.
Barclay James Harvest:
" life is for living and living is free."
This applies to us all.