I have just found out my husband is unable to cope with my parkinsons,he admited tonight how he is struggling and is scared for me and himself.i feel hearttbroken that he feels this way.i know it was a huge shock to us both and i admit at times i dont except it,but it does not matter about me i seem to be stronger than him my main concern is my husbands feeling.i can cope.
i know he has not been himself for a few weeks now so i made him go and talk the the gp tonight.
the impact on carers and family are immence and i wish i can take all that away.
i feel so sad.
Does your husband have any contact with other carers, or other men (sufferers or carers)? I think he needs to hear from others in the same boat. It's not the hell facing him that he probably thinks it might be.
We have a member here who was diagnosed at aged 8, & is now in his 40s and leading a perfectly normal life. Worry and panic are natural, but facts, and real experiences, are better!
no, he does not have any contact with anyone.very private person and talking how he feels to other people is not one of he stronge points.tonite was a shock and it did upset me to relize how he felt.may be i should ring the local parkinson support area n see if cancome up with any ideas.thank-you ray for your reply
Maybe he could sign up to this PD forum (or another) - anonymously maybe - to talk to other carers?
Hello Janine. My husband has Parkinson's and yes, the impact on the family is hard. My husband has been diagnosed for just over a year and there has been some awful times. Our emotions were all over the place and we had heated discussions many times. My husband is now being monitored by a lovely doctor and his team at our local hospital, including physio. I am welcome at these appointments but this week he is going to a new group meeting on his own.
These meetings are very helpful to both of us and we know we can contact them if we need to. Personally, I feel more at ease knowing there are people there to help us. I always look on the forum but do not post as often, would your husband be interested in this. Best wishes to you both. flo
If my experience as the partner of someone with with Parkinson's is anything to go by I think if you ask him you will find that neighbours and friends feel they can say the most appalling things to him, but not to you as the sufferer. Most of what they said to me was untrue. What follows is just a taster. A nurse down the road told me it was a good thing he had been so long being diagnosed and did not know what he had coming. A friend told me I must prepare to move to a more suitable house in the next view months.When I suggested a bungalow near our son she said that I would never manage to push the wheel chair up the hill. All this is said under the guise of friendship. That does not count the looks and "Oh dears. How dreadful."It nearly destroyed me and I consider myself a strong person. I am not saying Parkinson's is a piece of cake, but what I am saying is that sometimes when you are looking for support from friends ,who know nothing about Parkinson's you get just the opposite.I suggest you quiz your partner on exactly what he has been told by mates.Then I suggest you buy both yourself and him a good book like Parkinson's for Dummies,as there is nothing better than knowing your enemy. By the way,here we are seven years down the line and we are still in the same house and as yet John still does most of the things he has always done.The only thing he cannot do is play his accordion,only his melodeon, but he has just come back from a weekend on a canal boat with his Morris men mates,dancing their way from pub to pub.Maybe his dancing is not what it was,but acceptable and he has had a B**** good time.
people do come out with some remarks that can cause distress. I had not long been dx & met a woman I know only slightly. We chatted & she said I didn't look very well. I told her about the dx. She nearly screamed & told me that her late mother had it, how terrible & quite a few details I was not ready to hear I'm sure she didn't intend to distress but her stories weren't exactly encouraging
My OH does not talk about his feelings - I can see the shutters come down. He is quite happy to do the physical stuff but I know that he finds my mood swings hard I wish I could live with PD with a bit more grace.I would,t like to care for me
my hubby went to his gp last night and had a talk about a few things,one was my parkinsons. awhile ago i was asked if i would like to attend his parkinsons conference in south cumbria.so i reserved 2 tickets and now i think it could be a good thing that a chance to talk to someone there and find out more for himself.
he knows it will be difficult at first but were both going willing to give it a go.
The good thing about the situation you and o/h are in at the moment is that you seem to both be at least talking about his feelings, hopes and fears. Hang on to this for the time being. communication between husband /wife , or partners is such a hard area , and so easy to let misunderstandings drift.
even if you were both in peak health , it's hard to rub along with each other sometimes. So keep the talking going and try to have some moments when you both don't take yourselves too seriously.
What I also notice is that you sound a whole lot stronger than you did a little while ago ! I'm so pleased . The ' agony aunt' has finished now , you'll be pleased to know !
over the last few months me pd has got worse i can feel it allhappin to me,my legs feel stiff and ache so much at mo im strugglin to keep me self up i already walk with astick but been told now im wearin me left hip bone and need to walk with 2 sticks ,i hated one now 2 i cant get me head round it.me hands have stifferned up alot more makin typin alot harder to do and im dropping things alot more when tryin to grip things.ino im moanin ing and maybe this should be in the moan thread it just i feel like im strugglin alot more ive already had to give in for carers to come in and help me now and the social worker has alsorts rollin for me ,i just feel a burdon im only 41 had pd dx 7years ,ijust feel horrible and burdon
Sorry you're feeling like this, it must be tough for you. Good that the social worker and the carers are there to give you help. The extra help you're getting may only be temporary. You are certainly not a burden. You are a very warm, caring person and loads of people on this forum care very much about you. So remember that and accept all the help offered , in the hope that it is helping you to get to better days.
I think this posting (thread) may be the one to h elp me the most in coming months. I am trying to feel positive while waiting for my dx the end of the month, but like you all, I worry how my o/h will react. So far he is worried, and taking all this seriously, at least. But of course I don't want him to worry that things will be much worse, for a long, long time. We have been together for 14 yrs and I have been able to get him to talk about his feelings, at times. We've been thru the loss of his mom, his uncle, his best friend -his dog, Shadow, and his dad, plus numerous friends from work...all very hard for him...so I know he'll tell me how he feels. I just hope I can be strong enough to help him along with this. KNowing I can have you all "listen" at times, will help me a lot!
I am glad you are having a bit better day Janine, and I agree that you too, ALij, have helped us keep going.....you give me lots of laughs at the cafe', and for that I am grateful!
Good to see you dropping in - an indication to me that it's nearly sleep time for us in uk !
Hope you're not feeling too in the dark with our ' book talk' on the reading thread. I'm sure there are some u.s. authors as well we can talk about.
Yes, it is hard for the one's we share our lives with to play this background support role. Keep talking , is probably as good a way to be, but not too much. We females like to go over things more than once, don't we , and my o/h clearly thinks once is enough , while I probably chew things over again and again , then irritate him ! Anyway, like you say , we prop each other up here , when there's a need. Am going back to the games for a little while now , before bed ! Catch you again !
I am very glad we can prop each other up at times. Guess we all need it. My o/h is unusual for a guy.....he actually does more talking than I do. But I know you mean that to speak of PD too frequently can be a "downer" for them, and I agree. I do like my "alone" time....and sometimes have to go for a walk (tho shorter than before), to do so, as he is retired, and at home much more now.
I enjoy the games here too....a nice break from "real" life. My life is chaotic at best these days, and that's without dealing with PD....so I can use a diversion. Hope you all have a good nite....check in tomorrow....off to the games for a bit
Hi all each
feeling and emotions are so important in reflecting our stress and worrys to each other and nearest and dearest.we all have gut feeling when o/h or family have to cope wih a dx which will be life changing,and when were at our lowest we all think that we cannot cope but we do,even though a struggle at times.
to find out how onther person is dealing with the situation is most important and even helps the family member with the condition can make a big difference.
when i found out my husband was struggling ,i was upset and understood why he was not able to come to appointments to the hospital and anything to do with parkinsons he went quite.so i have now realized to give him his own time and space at times for the family member or o/h nd he needs to talk,i will always listen.
he has now come forward an said that he would come with me to the parkinson conference in the coming weeks.
i hope this thread will help other members family's and o/h to express how they feel.all you have to do is just post,and remember we are all here for you to give support and very important that you dont have to struggle on when you,re having a bad day,were here to help
thank you, Janine. YOu are right...we need to be able to lean on each other a bit. And we can't expect our o/h, husbands, etc. to do all the supporting, either. I have had several upsetting conversations, with people who I think thought what they said in some "weird" way was helpful, but were really the opposite. They told me of people they knew who had PD real bad....and how awful it is, and how terrible for me. I'm holding on to the fact, that not everyone gets real bad later on....at least that's what I have been reading on the medical sites.
I guess it takes time to find out who will be there when you need someone, and who will only make it worse.
I've been working on baby quilts for the babies in hospital around the world...it helps my stress level to do something useful for someone else.
I hope you are doing ok tonite....and have a good day tomorrow...as much as possible.
lorna thankyou for ur surport x
You are not a burden. EVERYONE needs help of some description at some time or another. These health professionals have made the choice that this is what they want to do. You are not forcing them.
Remember that you are still you. I know we cant be positive all the time but just remember all the positive and good things about you and all the ways in which you have and can help others.
You are always around on the forum when others need support so please let yourself be supported.
Thinking of you and everyone else having a bad time of it.
Ali - I add my support. You are always there to greet nervous & hesitant newcomers (myself included), and to offer words of encouraagement to those who feel down in the dumps (myself included).So you shouldn't feel guilty for asking or receiving a little help. You do, but you shouldn't.
As to walking sticks. There are some very pretty ones available from Ways & Means. I have a natty pair of paisley ones & am thinking of getting the red flower ones. They fold away. I am unsure how much they assist my mobility (probably because I do not use them correctly), but they keep the OT happy & as a fashion accessory they can't be beat!
To be serious I use the sticks,upon OT reommendation, for balance, steadiness & confidence purposes. Your needs may be entirely different and I urge you (gently) to discuss this with your OT.
Hi all, re: partner's feelings, it wasn't till I thought about it thatI realised my husband never refers to Parkinsons. Its always "people like you" or "people with your kind of thing" or something similar. Its strange as he was the one who insisted on telling our friends when I had my diagnosis last xmas. I just wanted to keep it between us & family. My own GP is part of a group & has suggested my OH speaks to his GP as the same practice, but I dont think he will.
How can I help him come to terms with it enough to be up front or shouldnt I be bothered?