Hello J I am pleased to say my wife and I accompanied by her long time friend had a very good day today, its our wedding anniversary on the 29th so using this as a motivation we visited a jewelers in the village of Kirkharle in Norhumberland, its a magical shop ,I told L to choose anything she wanted she loves silver and chose a really beautiful ring with matching bracelet don't get me wrong here I wasn't trying to buy my way back through time, that is not possible ,anyway I digress, two miles from the Kirkharle shop is the most excellent Norman Church, I have visited this tiny little church many times on my own, once at 4am on a breathtaking summer morning I arrived two minutes before the sun rise,the sky a rose coloured wonderous vision, its a very special place and I always seemed to rise above all difficulties when I returned home, almost as if the ancient structure had absorbed my pain and sadness, I felt renewed , and so it was today as we left I felt that same feeling as if a huge weight had been lifted from me , the rest of he day went well and apart from a slight shutdown in the afternoon I had held PD back and was free of the scourge for most of the day , a very special day. Kindest Regards Fed
Although my adult sons never ask how I am, what they did get absolutely right was their joint comment on receiving the news of my dx. which was: " Well you'll still be the same person Mum". It still makes me tear up. About two weeks after this was at my sons when I looked around and everything bar myself was as it had been and burst into tear and said to my daughter-in-law "Last time I was here I was normal" and then I remembeered what my sons had said. We have to believe we are valued for what we are and not what we can do.
i know this thread is a few months old but felt i had to reply
i can fully empathise with you Fed and you are quite right in saying communication and talking to each other is vital
I have been seeing my partner for 2 yrs the beginning of this year started really bad
OH was having major problems and was undergoing tests then in June this year he was told he had bowel cancer which thankfully has been treated and cured with surgery in July this year , just when we thought things could not get any worse and things were looking up i get the dx of Parkinsons disease in August after much soul searching and possibly initially feeling very sorry for myself i decided to take the bull by the horns and talk to my OH and had a very open conversation with him regarding our relationship and my dx which he seemed to avoid talking about almost as if he ignored it , it would go away which ended in me saying to him that i fully understood if our relationship did not survive under the circumstances and the strains put upon it with PD and Cancer but were still here and still going strong neither of us are going anywhere so yes communication is very important and love can indeed conquer all
I feel very strongly that continued dialog with your OH is vital, make him understand the
situation you are in and that you need him more than ever , our predicament is identical my dear wife
just could not grasp the way BLACKHEART was destroying me, I was diagnosed with this evil
disease in 99 and it was March this year when the light came on, the reason for this awakening
DUODOPA this brilliant system has brought us closer together not only by improving my mobility so
we can go out more, but the managing of Duodopa has made us a two man team against PD and we
work well together sharing the maintenance , it does require minimum attention but for anyone reading this dont be put off the benefits far outweigh any inconvenience and more importantly it has brought us closer, I am so much more aware of how much my wife does for me we recently celebrated our 30th wedding aniversary and I am so glad we decided to make our future together it has not been easy at times ,but we wont go into that here, but I will say this , you must talk through your difficulties, if you stop communicating then you stop caring and if I may say so Shelly when you disclose to your nearest and dearest, family and friends that you have PD most of the reaction is the same as if you had just told them you had a ingrown toe nail ,they just do not understand ,so educate them Shelly tell them warts and all about your fears and anguish and tell them that it isnt catching and they can still come visiting and give you a hug, and your husband will I am sure will be more sympathetic ,forewarned is forarmed as they say,well Shelly its now 1.18 so I think I will sleep now, I would like to know how things go for you, if you wish to contact me my e mail address is available
I am delighted to say things are much improved now the Duodopa system is working well and managing it has became second nature it is a bit fiddley but working together we can overcome any problem now its still a battle at times but the friendship which every relationship needs is very strong now, what is it about bonds forged in adversity , of all the events in my life good and bad I have never been so aware of my partners input her ceaseless efforts to care for her damaged husband since I was given the opportunity last March to try the Duodopa which I almost backed out of , (I am so glad I didnt) we have learned things about ourselves ,we have laughed and cried together but now look forward, I am re applying for my driving licence , my assessment is on the 10th I am looking forward to it so much more positive now.
yes private message me the email address and i will reply , bit of a different situation my side , my partner and i are not married and we do not live together
I come from a large family my grandparents had 10 children so many Uncles Aunts Cousins etc way to many to tell individually about my PD so after i had told the people closest to me i decided to do a letter to my friends and family and although a little unconventional i posted it on my social media account as many of my friends and family keep contact via social media , not for everyone i know but it worked well for me and a lot of feedback i received was very positive with many saying it helped them to understand PD and what was involved in it .
I haven't been on here for several months but have just read your post,
My heart breaks for you and your wife as I am have been and still am in a similar situation to you and for many years now and it is no easier now my husband is in a nursing home. There are not enough homes that understand early onset PD, this is such an uphill struggle and I had hoped that it would improve but sadly not.
We love each other dearly and hate our situation but I haven't been able to look after my lovely husband at home for over three years now and the nightmare goes on.
I am sure your lovely wife feels just the same as you do but is tired out and holding back her emotions because it is all so hard.
I understand how new people with the condition want research but there is not enough being done to support people living with the day to day as sadly they will find out at some stage.
We all want a cure but it is not coming soon, we have to keep hope alive but the reality is so different as you are now finding out.
Please have a big hug from me and give your lovely wife one too, I am 68 now and have to drive an hour twice a week to see my husband, the only thing that helps on the drive is playing Rod Stewart loudly on the CD player.
Try to get more help and treat yourselves to a bit of reflexology or another therapy it has helped us.
Just read your comments about things looking up I am so pleased for you, emotions are the devil aren't they and the more you feel for someone the harder it hurts.
Hello Vivian. Thankyou for your kind thoughts,I have just been reading all the letters of support on this
thread ,its so humbling and also reassuring knowing that we have so many friends , I know we will probably never meet but thankyou all your kindness is forever appreciated, Fed
I have been reading though this vintage posting and began to wonder how many people are having relationship worries as a direct result of PD, not only themselves but whole families can be blighted and couples who have been in harmony for 20 or 30 year fall to bits when parky strikes, my own marriage has been strained almost to breaking point by this b....y diease with but thankfully we are back on track, its a real pain I know having to deal with someone this evil affliction and to all who are having hard times god their their hard times I wish you well this coming christmas and hope that 2014 brings you peace.
I recognise the situation only too well Fed. I have been married to my wonderful wife for 42 years now. I am 67 and she is 62. However, since I was diagnosed 5 years ago our relationship has become increasingly strained. Yes she is a first rate carer but sometimes gets very impatient with me. Indeed I get impatient with myself. We both have elderly parents to cope with as well (her father and my mother) which puts even more strain on things. I try to keep smiling but it.aint easy. I just hope they find a cure for this thing soon, otherwise I dread what the future may hold. Maybe I should make a wax doll, call it Mr Parkinson and stick pins in it.
My husband has Parkinson's and at the moment we have a lot going on in the family. Two of them are seriously ill in hospital, another one is recovering from an operation and another has come home from hospital but is still very poorly. And yes, Parkinson's is very much in this mix of emotions. Sometimes he struggles to cope and needs a bit of time to recharge. I get very stressed and my husband has his hand on my arm saying for me to calm down.
This Christmas seems particularly cruel to so many of us, it is hard to be in a festive mood. Thank heavens for another relative who gave us Christmas Dinner and a safe place to unwind. I hope that Christmas has had some enjoyable bits and best wishes for the new year. flo x
I am greatly saddened by the troubles you are going through, taking one hit after another is the worst of the worst, when you see no end, no respite, I know the comparison I use does not compare but I will use it anyway, its like being in the Battle of the Somme, with incessant constant high exsplosive rounds falling all around nowhere to run you become shell shocked your compassion stretched to breaking point I have always said its harder to watch loved ones suffer than suffer oneself you desperately want them to recover and be well and the fears now looming large are driven away and out of your life for ever, unfortunately life more than not chooses not to play the game and the sad situation you are in now becomes reality, I thought I had it rough. you have to summon all your strength now Flo you may think there is no end to the worry and grief but there is think of it like this ,with most folks this level of suffering is spread over a lifetime, you have recieved yours in one huge lump and it will be resolved, you will be granted freedom from your anguiish you must endure until then, I wish you and your family well Flo and I know you will find peace soon.
May all the very best of wishes and happiness be yours in the new year ahead.
Hello Fed, thank you for your kind thoughts, it is indeed so hard to watch another's pain, one of these people is my Mother. My husband's tremor is worse than usual today, the stress doesn't help.. Usually the tremor is on one side but today it is on both. We are going to see my Mother in hospital later, so I hope he will be able to cope as he is very fond of her.
It does seem never ending at the moment but others that we know are having a worse time, all we can do is pass on our warmest thoughts and best wishes for a better 2014. flo x
I`m the carer not the one with PD and I`m very aware that I get impatient when I`m tired, mainly through being woken several times at night. But just feeling I have to be responsible and think ahead for everything is tiring too. I`m trying to find a way to arrange my day so that I can catch up on sleep. Perhaps you can see a way to help your OH be less tired or feel less need to be the one where the buck stops. I can`t discuss changes with my OH because he has some dementia but you are all clearly on the ball and so might be able to make your own changes.
Being there for you shows your OH cares however snippy (s)he might be.
Thanks for your helpful post. You're right that PwP and their carers need a "code of practice" to work by: i suggested some items in a post at http://www.parkinsons.org.uk/comment/80467#comment-80467 and i think adding "sort this out while you both still can" would be an excellent idea.
Oh golly, it's me that's the "snippy" one, completely outrageous behaviour for which I at least try to apologise. My NY resolution needs to be something like trying to be a better PwP.
I have just read your post and to me you are behaving perfectly normal for someone stricken with PD you encourage your OH to take time out and seem like a very unselfish person, My wife is very stub .born and sometimes cares too much, I know that might sound strange but when I do manage to persuade her to go out for the day she is ringing me every half hour "just checking" I want her to not worry and enjoy the break, as you probably know we have been through a rocky spell recently but now we are stronger than ever and work together to fight the Beast, its the only option really.
