This is a hard post. I'd value your honest opinion. I was dx 5 years ago and for a while continued to function 'normally' working 4 days a week, haing another child (we have two now), running the house. But lots has happened since the dx including losing my fatheR, having work problems on returning from maternity leave and a decline in my health. I ended up getting counselling to help me address the dx and as a result I have moved to a point where I want to make the most of what I have, cut my cloth to my means and try unto eventually give up work. My partner is resisting hard and seems to be having a very hard time in understanding and empathising with the dx. I'm trying to understand it from his perspective (the future, financial worries etc etc) but am getting little back. I've got more slapdash with house chores because I get to the end of the day and I'm whacked so he's taken lots more on. Which is wonderful in one way but he is so resentful its not really worth it. How have you managed to protect and adapt your relationships? I'm close to giving up tbh.
I also have to add that I recently went to visit a friend who has a similar but more progressive condition to PD. the care her partner gave her made me think I won't ever get that. It makes me really sad. What can I do to remedy this? Ideas?
Hi Quarkie
So sorry you are struggling at the moment.
I guess reality has caught up with him, while you are working, looking after the kids etc he could tell himself it is all ok, as you are finding it more difficult and need help it is probably frightening for him, he sees all the life you planned together going out the window.
He is feeling the burden of a huge responsibility on his shoulders of being the sole wage earner,having to look after the home after work, and becoming a carer for you potentially, and then there are the children. Men like to be in control and he can feel it slipping away.
Has he seen anyone about how he is feeling (Not always easy to talk to you partner if they are a part of the problem)
My husband went to a counsellor when he lost his mum and our little dog, then I got my diagnosis and it became all too much. It really helped him to talk to someone who was not directly involved, it really helped him and now we are closer together.
Caroline
So sorry you are struggling at the moment.
I guess reality has caught up with him, while you are working, looking after the kids etc he could tell himself it is all ok, as you are finding it more difficult and need help it is probably frightening for him, he sees all the life you planned together going out the window.
He is feeling the burden of a huge responsibility on his shoulders of being the sole wage earner,having to look after the home after work, and becoming a carer for you potentially, and then there are the children. Men like to be in control and he can feel it slipping away.
Has he seen anyone about how he is feeling (Not always easy to talk to you partner if they are a part of the problem)
My husband went to a counsellor when he lost his mum and our little dog, then I got my diagnosis and it became all too much. It really helped him to talk to someone who was not directly involved, it really helped him and now we are closer together.
Caroline
I think that Caroline's analysis and advice are very very insightful and wise.
The only thing I would add is I would be very careful how you suggest he might need 'help'. Men can be rather touchy on that.
The only thing I would add is I would be very careful how you suggest he might need 'help'. Men can be rather touchy on that.
Hello Quarkie,
So sorry to hear you are having these problems, but you are not alone in this situation. My husband has had pd for thirty years and is still only 68years old.We had a young son and I was already disabled, we didn't have much money but we found a cleaner who came in to do the main cleaning and ironing so that my husband only had the garden and shopping to do, this was when I was housebound. I eventually got slightly better and we bought an electric wheelchair which has opened up my life, it is nothing to see me going around our small town loaded up with shopping and all the assistances are very helpful.
I agree with the previous comments, but I also think that you need to sit down together if you can and discuss what you both think would make your lives easier, therefore taking away some of the stress and concerns you both are bound to have.
We used to have two groups one of people with pd and one for the carer's this proved really useful for both groups knowing that others understood and it was all in complete confidence, but as you may not be ready for this or it may not be possible in your area, a counsellor/pd nurse would be able to help and possibly reassure you both.
My husband had to give up work at 46yrs old and of course I couldn't work anyway so we had big adjustments to make and a lot of worry, but life is all about changing to a different path for one reason or another and I am sure you will see this in time.
I have always felt that there should be more support for carer's especially in long term conditions as we want to do our best for our spouses, but we are on a long learning curve as well.
All my very best to you both and good luck.
vivian
So sorry to hear you are having these problems, but you are not alone in this situation. My husband has had pd for thirty years and is still only 68years old.We had a young son and I was already disabled, we didn't have much money but we found a cleaner who came in to do the main cleaning and ironing so that my husband only had the garden and shopping to do, this was when I was housebound. I eventually got slightly better and we bought an electric wheelchair which has opened up my life, it is nothing to see me going around our small town loaded up with shopping and all the assistances are very helpful.
I agree with the previous comments, but I also think that you need to sit down together if you can and discuss what you both think would make your lives easier, therefore taking away some of the stress and concerns you both are bound to have.
We used to have two groups one of people with pd and one for the carer's this proved really useful for both groups knowing that others understood and it was all in complete confidence, but as you may not be ready for this or it may not be possible in your area, a counsellor/pd nurse would be able to help and possibly reassure you both.
My husband had to give up work at 46yrs old and of course I couldn't work anyway so we had big adjustments to make and a lot of worry, but life is all about changing to a different path for one reason or another and I am sure you will see this in time.
I have always felt that there should be more support for carer's especially in long term conditions as we want to do our best for our spouses, but we are on a long learning curve as well.
All my very best to you both and good luck.
vivian
I have suggested counselling for us both but he's said no. I think there could be some mileage in the PD related counselling though. It's so hard to know. Thank you so much for all your wise advice.
ps you could try 'I need to go to a pd advisor but i need some support, can you come along to help me get through it?'
turnip (traitor to his gender)
turnip (traitor to his gender)
I totally understand how hard it is i stopped work 3 yrs ago and i was 36.I struggle keeping up with my 8, 6,and 2 yrs old kids. I always try to make sure i never shut my husband out and talk. If i struggle i ask my friends or try to get someone cheap to help with chores. Its awful at times especially tryiung to hide my symptoms from the kids just to protect them even though they know and are willing to help
i would just like to say that my wife me becasue of this illnesss yes 31years down the pan my doc said that he would see her 1 to 1 but did not want to said didnt want to kown so now at 54 years old it looks its going to be a long run in
thats very sad d1d2d3. my sincere sympathy.unfortunately not a rare event.
t
t
thank u i kown that wont be the frist or the last it just brought it all back
D1D2D3
if you want to talk about it feel free to email.
if you don't then thats fine too,
i've been married 30 years but fingers crossed so far things have held together.
best of luck mate
as they say here in oz.
t
if you want to talk about it feel free to email.
if you don't then thats fine too,
i've been married 30 years but fingers crossed so far things have held together.
best of luck mate
as they say here in oz.
t
Hello d1d2d3,
I just wanted to say how sorry I am that you are in this position, my husband and I have been married for almost forty seven years and he has had PD for thirty of them. You are not alone which is very sad as you are still the same person you just have a few problems, it's a shame that some people can't seem to cope with the problems health conditions bring but it can happen to anyone. Please remember you will always get support from the people on here so you are never alone, I hope things start to improve for you soon.
best wishes
Vivian
I just wanted to say how sorry I am that you are in this position, my husband and I have been married for almost forty seven years and he has had PD for thirty of them. You are not alone which is very sad as you are still the same person you just have a few problems, it's a shame that some people can't seem to cope with the problems health conditions bring but it can happen to anyone. Please remember you will always get support from the people on here so you are never alone, I hope things start to improve for you soon.
best wishes
Vivian
just to say 10000 thanks
all i can say is TIME
time to adjust.... time to talk.... time to look at benifits and then getting help... if you get the pd nurse to talk to you and your partner she might be able to help and advise you re benifits adaptions to house and help in the house.
as for housework as long as a little is done every day you should be able to pace yourself and not have to much to do in one go.... my old gran told me once that as long as your kitchen and toilet are clean you will manage.
i also note that you have young children you can make a game for them where they play with a duster my granchildren love that game and i get my shelves dusted at the same time lol.
but the most important thing is carry on talking to each other as you will both have fears and worrys that need to be aired.
time to adjust.... time to talk.... time to look at benifits and then getting help... if you get the pd nurse to talk to you and your partner she might be able to help and advise you re benifits adaptions to house and help in the house.
as for housework as long as a little is done every day you should be able to pace yourself and not have to much to do in one go.... my old gran told me once that as long as your kitchen and toilet are clean you will manage.
i also note that you have young children you can make a game for them where they play with a duster my granchildren love that game and i get my shelves dusted at the same time lol.
but the most important thing is carry on talking to each other as you will both have fears and worrys that need to be aired.
Often in life a major change can challenge a relationship ... be it a change in career, having children, financial stress or sickness.
I feel it is important to talk about what got the two of you together in the first place ... is that magic still there?
Often we need to re-asses goals and dreams based on changing circumstance. Men are hunters and gatherers and often find it hard when they cannot support their family financially.
Maybe try discussing a job from home (online) and ask his help to write up a new plan for both of you ... taking in to account everything and not just focused on your Parky Dx.
If he still resists ... I would question him openly about the long term survival of your marriage
I was married for 21 years and divorced 4 years ago due to the relationship being beige (A Billy Connelly term)... am about to marry again in 3 weeks and my wife is very supportive since my Dx 12 months ago ...
Good luck
I feel it is important to talk about what got the two of you together in the first place ... is that magic still there?
Often we need to re-asses goals and dreams based on changing circumstance. Men are hunters and gatherers and often find it hard when they cannot support their family financially.
Maybe try discussing a job from home (online) and ask his help to write up a new plan for both of you ... taking in to account everything and not just focused on your Parky Dx.
If he still resists ... I would question him openly about the long term survival of your marriage
I was married for 21 years and divorced 4 years ago due to the relationship being beige (A Billy Connelly term)... am about to marry again in 3 weeks and my wife is very supportive since my Dx 12 months ago ...
Good luck
Was diagnosed two days before I went on holiday with my family last week. Still can't take it in. I don't feel ill or anything. Just have this tremor. Had MRI scan yesterday. Back to work in September when the schools go back and I don't know what to say to the boss of the nursery. We are all carrying on as normal at home. What is going to happen to me, symptoms wise. I already have Type 1 diabetes. I feel very strange about the whole thing.
Hi Golf Widow
Another teacher?
I work for the Education department as an Inclusion Officer (used to be known as Area Senco) now having been an Early Years Teacher for some years.
There are many teachers / ex-teachers on this site. Teaching seems to be a high risk category for PD!.
Give yourself time to take it all in,it can be overwhelming I know. It is impossible to predict how it will affect you because it affects everyone differently.
I am 53 and have been Dx for 17 months .I Still do everything i used to do,( but with a fuzzy head and a shaky arm).
For me, i told everyone I worked with straight away, it was easier. If I go into a meeting where there are people I don't know, I always ask if I can use the dictaphone as i have PD and can't write, everyone has been very supportive, I have been very lucky.
My employer has made loads of adjustments for me which is great and the good news is, the children don't care!! to them you are what you are and if you are a good teacher, they will love you anyway.
Good luck x
Another teacher?
I work for the Education department as an Inclusion Officer (used to be known as Area Senco) now having been an Early Years Teacher for some years.
There are many teachers / ex-teachers on this site. Teaching seems to be a high risk category for PD!.
Give yourself time to take it all in,it can be overwhelming I know. It is impossible to predict how it will affect you because it affects everyone differently.
I am 53 and have been Dx for 17 months .I Still do everything i used to do,( but with a fuzzy head and a shaky arm).
For me, i told everyone I worked with straight away, it was easier. If I go into a meeting where there are people I don't know, I always ask if I can use the dictaphone as i have PD and can't write, everyone has been very supportive, I have been very lucky.
My employer has made loads of adjustments for me which is great and the good news is, the children don't care!! to them you are what you are and if you are a good teacher, they will love you anyway.
Good luck x
Hi Carolineb211.
Thanks for your reply. Didn't expect one so quickly. Have spoken to HR at work and she has been great. I have lots of decisions to make right now and they all seem as important as the next (all of them about my life). I feel sure (yet again) that PD is due to stress. I have been told Type 1 Diabetes which I have is also due to that. I want to leave all my problems at the door of PD and go off and start again. Some friends have said not to give myself more stress, but I feel it would help if I could begin with the biggest one and work backwards. Suddenly I have started to evaluate my life and look forward more. To make the most of my life if you get me.
Thanks for replying. It's comforting to know I am not alone.
Thanks for your reply. Didn't expect one so quickly. Have spoken to HR at work and she has been great. I have lots of decisions to make right now and they all seem as important as the next (all of them about my life). I feel sure (yet again) that PD is due to stress. I have been told Type 1 Diabetes which I have is also due to that. I want to leave all my problems at the door of PD and go off and start again. Some friends have said not to give myself more stress, but I feel it would help if I could begin with the biggest one and work backwards. Suddenly I have started to evaluate my life and look forward more. To make the most of my life if you get me.
Thanks for replying. It's comforting to know I am not alone.
Hi again,
You are certainly not alone, there will always be someone here for you when you need them!
Try not to rush into any decisions, PD might be a progressive disease but it does not happen overnight. Take a good long time to make decisions that will have a huge impact on your life. Discuss it with family because, believe me, it will affect them too.
For me, work keeps me going. I would stagnate at home all the time with only the PD and housework to worry about !!.
I work term time which is ideal as I get regular holidays every 6 weeks or so to re-charge.
Caroline x
You are certainly not alone, there will always be someone here for you when you need them!
Try not to rush into any decisions, PD might be a progressive disease but it does not happen overnight. Take a good long time to make decisions that will have a huge impact on your life. Discuss it with family because, believe me, it will affect them too.
For me, work keeps me going. I would stagnate at home all the time with only the PD and housework to worry about !!.
I work term time which is ideal as I get regular holidays every 6 weeks or so to re-charge.
Caroline x