Hi Drobb and everybody,
I am so relieved that what began as a self absorbed posting after a few drinks ,feeling all was lost,has turned into something special.I am so pleased for you Drobb.It fills my heart with joy to hear your words.You have shared with us your feelings,others will find strength and encouragement in your words,I have.To realise how many can relate and also come forward with sound advice,but also understanding.To know that the huge support generated by just opening up, has made so many people come forward and pool together, in one virtual mass hug of heartfelt,loving support.That must set the seal on hopefully a brighter year filled with hope.
There have been times on here when frustration and angry personal words,myself not excluded, have left this forum almost barren.With a sense of disintegration and unhappiness.To receive all the loving,kind thoughts from those who know me,but also those who don,t,but felt compelled to help and offer support.Well,tears fill me as I type.There is so much to offer on this forum,as there also is on another I frequent.The importance of this place,this haven,this crucial cradle of support is beautifully demonstrated here on this thread.There is always someone available to listen,so please,if anybody feels desolation,loneliness,fear.Grab these lifelines of understanding,advice and hope.
It just goes to show,how many people out there are going through similar.Maybe,just reading and trying to find strength and guidance to help them through their own hardships.We are all in the same boat,some more buoyant than others,others constantly bailing out,and some as steady as a battleship.We all share the same thing though,Parkinsons.It,s in sharing our hopes and fears,personal accounts,ups and downs.That brings everything together,a community of support and understanding.Not only for those of us with Parkinsons,but also our loved ones,partners and carers,who feel every struggling step we take.Often overlooked and hurting in our grief,when all it takes are words exchanged and a two way understanding that together,even the darkest day can be smiled upon.
The moderators have been so supportive,and personal messages and kind words here from people I now call friends.Sure there will be more ups and downs.However,if one thing has been proven here.Communication,support and knowing you are not alone makes each day easier,and that even in the darkest moments,hope and strength can be found and is always available here.
Take care
All the best
Titan(John)x
Hi,
The only message I can send you is WELL DONE! (and just to let you know
your messages made me cry but with joy)
The only message I can send you is WELL DONE! (and just to let you know
your messages made me cry but with joy)
Hey there Titan,
I have only just recently started to read and add posts to this forum. It's Sunday morning, can't stay in bed too long, so I'm up,coffee made and reading this thread, this story. Only it's not fiction is it,it's fact! So much of what you have said resonates with me.It's been good to read all that has been added too. Sometimes I think that it's all too easy to assume that everyone knows what we ,as PWP's are feeling? Why would they?? I get so wrapped up in my own thoughts, my own fears and then find it impossible to portray,articulate or just talk to anyone about what actually frightens me.... and when I do try it ends up sounding like dirge anyway.
I really just wanted to say that I applaud you Sir, because I know how scary the future looks from your perspective (I'm 46 and was diagnosed 4 years ago ) and although I am of the female variety, most of what you said,I can relate to. Sometimes being honest with ourselves is so bl**dy hard, but I try to remain positive , have a sense of humour, (it's a must in my house) I laugh far too loudly, cry at the drop of a hat, have become very demanding and always think that I am right about everything. I am, for all intense and purpose, as pain in the ass !!!!! But..... I am loved, I know this and even when I am at my lowest point,when I am having a tantrum because "no-one understands me" or "I can't explain why I spent that money on shoes!?", or I am plainly and simply exhausted and bad tempered!!! I know that my poor , unsuspecting , beautiful patient man will be there for me. I know he doesn't understand entirely what's going on in my head, how can he??? I think the way forward, as many of our fellow PWP's have said in this thread, is talk, talk and then talk some more. Even if it doesn't always make much sense at the time, say it anyway. I find that if you don't, whatever it was that you wanted to say manifests itself into an even bigger issue. I have become a fully paid up member of the "keep it real" club these days..... and even though, as I said earlier, sometimes it doesn't make sense , not a single thing I need to talk about, is easy to understand, but I'll still say it anyway............. pd doesn't deserve capital letters, it's a pain, an inconvenience, a boil on the a*se of society, but I'm dealing with it.
I wish you well Mr T, keep loving, keep laughing, we are all unique and "special" in our own way and in the face of adversity, what do we do.......??? Don the armour,mount our trusty steeds and lance the ba****d !!????**** Much respect and kind regards to you
RUBY xx
I have only just recently started to read and add posts to this forum. It's Sunday morning, can't stay in bed too long, so I'm up,coffee made and reading this thread, this story. Only it's not fiction is it,it's fact! So much of what you have said resonates with me.It's been good to read all that has been added too. Sometimes I think that it's all too easy to assume that everyone knows what we ,as PWP's are feeling? Why would they?? I get so wrapped up in my own thoughts, my own fears and then find it impossible to portray,articulate or just talk to anyone about what actually frightens me.... and when I do try it ends up sounding like dirge anyway.
I really just wanted to say that I applaud you Sir, because I know how scary the future looks from your perspective (I'm 46 and was diagnosed 4 years ago ) and although I am of the female variety, most of what you said,I can relate to. Sometimes being honest with ourselves is so bl**dy hard, but I try to remain positive , have a sense of humour, (it's a must in my house) I laugh far too loudly, cry at the drop of a hat, have become very demanding and always think that I am right about everything. I am, for all intense and purpose, as pain in the ass !!!!! But..... I am loved, I know this and even when I am at my lowest point,when I am having a tantrum because "no-one understands me" or "I can't explain why I spent that money on shoes!?", or I am plainly and simply exhausted and bad tempered!!! I know that my poor , unsuspecting , beautiful patient man will be there for me. I know he doesn't understand entirely what's going on in my head, how can he??? I think the way forward, as many of our fellow PWP's have said in this thread, is talk, talk and then talk some more. Even if it doesn't always make much sense at the time, say it anyway. I find that if you don't, whatever it was that you wanted to say manifests itself into an even bigger issue. I have become a fully paid up member of the "keep it real" club these days..... and even though, as I said earlier, sometimes it doesn't make sense , not a single thing I need to talk about, is easy to understand, but I'll still say it anyway............. pd doesn't deserve capital letters, it's a pain, an inconvenience, a boil on the a*se of society, but I'm dealing with it.
I wish you well Mr T, keep loving, keep laughing, we are all unique and "special" in our own way and in the face of adversity, what do we do.......??? Don the armour,mount our trusty steeds and lance the ba****d !!????**** Much respect and kind regards to you
RUBY xx
Hi Titan,
I was so moved by your story and am glad that you have had such a lot of support and understanding as well good results by talking through things with your wife.
My husband has had PD for almost 30years and was diagnosed at 39 so we have been through many of the feelings you both must have and although our relationship is different our love for each other is the same. The feelings we have is of great sadness and a kind of greiving which is understandable really as PD has such an impact on all the family, but you find ways around the problems. I always say that just when you think you have mastered a problem you get another to keep you busy, life certainly is never boring.
Unfortunatley my husband has now gone into a nursing home because I have chronic back problems and although we had 24hour care we had 80carer's in two years so you can imagine how difficult that can be. How I wish I had a strong back and have been able to keep him at home, this now brings us into another change we don't like but have to accept. My hope is that there are changes to the care system which is desperatley needed so that peole will not have the problems we had. When you need more help and please accept and convince your wife to accept this before things get really strained between you do get good advice and think about direct payments which enables you to employ your own help which in turn means you get the same carer's you pick yourself.
I admire you greatly for talking about [u]the real life[/u] with parkinson's as not many years ago you would never read about these life experiences. My husband and I have always spoken about our problems when asked at branch meetings and when we belonged to Yappers and many people said to us after thank you for speaking up as they were too shy. It is only by sharing that you realise you are not the only ones going through life with parky.
When mu husband was feeling very low we would either play scrabble or watch one of the many comedy cd's we have or if the weather is fine I would persuede him to go for a drive somewhere and then the mood lifts.
We have many good friends who understood that it was difficult for him to go to their house for a meal and would always come to us bringing some food to add to the table, this also enabled him to rest when he needed and come back to join us when he was feeling better.
Do give your wife a big hug and I send you one too, I just wish life could be easier for us all.
I hope I haven't gone on too long
best wishes to everyone who wrote to you.
Vivian
I was so moved by your story and am glad that you have had such a lot of support and understanding as well good results by talking through things with your wife.
My husband has had PD for almost 30years and was diagnosed at 39 so we have been through many of the feelings you both must have and although our relationship is different our love for each other is the same. The feelings we have is of great sadness and a kind of greiving which is understandable really as PD has such an impact on all the family, but you find ways around the problems. I always say that just when you think you have mastered a problem you get another to keep you busy, life certainly is never boring.
Unfortunatley my husband has now gone into a nursing home because I have chronic back problems and although we had 24hour care we had 80carer's in two years so you can imagine how difficult that can be. How I wish I had a strong back and have been able to keep him at home, this now brings us into another change we don't like but have to accept. My hope is that there are changes to the care system which is desperatley needed so that peole will not have the problems we had. When you need more help and please accept and convince your wife to accept this before things get really strained between you do get good advice and think about direct payments which enables you to employ your own help which in turn means you get the same carer's you pick yourself.
I admire you greatly for talking about [u]the real life[/u] with parkinson's as not many years ago you would never read about these life experiences. My husband and I have always spoken about our problems when asked at branch meetings and when we belonged to Yappers and many people said to us after thank you for speaking up as they were too shy. It is only by sharing that you realise you are not the only ones going through life with parky.
When mu husband was feeling very low we would either play scrabble or watch one of the many comedy cd's we have or if the weather is fine I would persuede him to go for a drive somewhere and then the mood lifts.
We have many good friends who understood that it was difficult for him to go to their house for a meal and would always come to us bringing some food to add to the table, this also enabled him to rest when he needed and come back to join us when he was feeling better.
Do give your wife a big hug and I send you one too, I just wish life could be easier for us all.
I hope I haven't gone on too long
best wishes to everyone who wrote to you.
Vivian
I think that this is what I joined the forum for. I'm 50 years old and have been ill for a least 26 of those. I can remember vividly getting married. As a young couple we started our married life with my husband having to dress and undress me , being told that a family was out of the question etc . We have just celebrated our daughter's 17th birthday by having 16 of her friends stay overnight. I sometimes have to pinch myself and look at her especially when she's with her father to realise how lucky we all are.
There has not been a day when I have not reflected on what I'm asking of my family. Without doubt friends and family can be limiting as well as liberating.
Those of us born with an overdeveloped sense of duty will always find being dependent on others excruciatingly painful. Allowing us dignity in the face of a syndrome which does little else but strip us of our dignity, is indeed a daily act which we demand from those we love.
In my experience drunken soul-searching has its place but at the end of the day it is the daily grind of existing in and mutually respectful and loving relationship which is the real hard work. I spend much of my time alone since I retired due to ill-health. In order for this to work I had to be able to look in the mirror and like myself. Not easy.
It is indeed a precarious line we walk between exacting sympathy over much and retaining a sense of dignity/pride. To this end I have found for example that using a walking stick and treating it as a fashion accessory, has given me back confidence, and more confidence than I might ever have expected.
I am a complete addict to radio four and the World Service without which I would simply have lost my sanity.
Titan, and to all those who have the guts to bare their feelings so unselfishly, I tip my hat.
Keep talking.
There has not been a day when I have not reflected on what I'm asking of my family. Without doubt friends and family can be limiting as well as liberating.
Those of us born with an overdeveloped sense of duty will always find being dependent on others excruciatingly painful. Allowing us dignity in the face of a syndrome which does little else but strip us of our dignity, is indeed a daily act which we demand from those we love.
In my experience drunken soul-searching has its place but at the end of the day it is the daily grind of existing in and mutually respectful and loving relationship which is the real hard work. I spend much of my time alone since I retired due to ill-health. In order for this to work I had to be able to look in the mirror and like myself. Not easy.
It is indeed a precarious line we walk between exacting sympathy over much and retaining a sense of dignity/pride. To this end I have found for example that using a walking stick and treating it as a fashion accessory, has given me back confidence, and more confidence than I might ever have expected.
I am a complete addict to radio four and the World Service without which I would simply have lost my sanity.
Titan, and to all those who have the guts to bare their feelings so unselfishly, I tip my hat.
Keep talking.