Day to day living with PD


#1
I was diagnosed with this horrible disease!!!! almost 3 years ago, I thought I was doing ok but have just found out my husband says it,s all too much and he cannot cope with this person I have become. I am a fun loving person and won,t let this thing get the better of me, so it has come as quite a shock to realise that he is not as strong as I thought he was. We have been through lots in our life and never thought that when the going was tough he would not be there for me. St present I don,t think I,m anywhere near the terrible stages. What do you do, I,m trying to find an inner strength but it,s not easy. Sorry to moan I just need to get it off my chest.

Marymo:rolling_eyes:

#2
Hi.

Has your hubby told you specifically what it is about the "new you" that he suddenly can't cope with?

Can I ask yoour ages, and what drugs you're on?

Thanks, and welcome!

Ray.

#3
marymo, welcome.
I think that some people simply find an illness, a condition , a disease or a change in someone they care about very difficult to accept.
I wouldn't worry too much about the "stages of PD". It seems to me a bit like worrying about the "stages of aging". Inevitable, unpredictable, individual and bringing joy as well as woe
I am not suggesting a dx of PD is a cause for joy - it isn't. But I have learned a lot about myself, my strengths & weaknesses. I have learned to have some humility & to ask for help. And I have found comfort on this forum
I wish you the very best

#4
Hi Marymo

My husband is struggling to adjust to my PD as well. I know he loves me but is so scared of what or who I may become. We looked forwards to a long and happy retirement and have had to adjust our thinking.

we will still have a long and happy retirement I hope, it will just be a different one to what we were expecting. I plan on being around to be a 'batty old woman' for a long time yet and if I need help to do that so be it.

Changes do not happen overnight, the progression will be gradual, giving him time (I hope) to adjust to each new me.I have lots of lovely children who support me and OH so we will do OK.

Hope things work out for you.

Caroline
X

#5
Hello Marymo and welcome

I note that you say you have just found out that your husband 'says' he cannot cope. If he said this to someone else, can you gently ask him exactly what he meant. I'm carer to my husband and have to admit that the speed of his decline (exacerbated by a recent accident) is painful to me.
Not that I cannot cope, I can and will but I miss the old o/h very much.
It sounds as though you have been very happy together and if you manage to air your husbands fears - which I suspect they mainly are, it might help matters a lot.

Kind regards

JC

#6
Thanks everybody for your replies. I felt that I had fallen into a bit hole and needed to try and get out by talking. We have just celebrated 40 years of marriage and we renewed our vows, he is 59 and I am 61 but do not look our ages,and I felt we were starting a new life together. After what he told me I confronted him in the morning and spoke to him with regard to my condition and the changes in our life,to cut a long story short we both ended up crying and he said that he would be there for me and that he had felt things getting on top of him, I've tried to get him to speak to someone who has gone through the same as him and have even told him to join the forum group to speak to other carers. He had pneumonia himself and was off work for 7 months so I think also there has been a bit of depression. Hopefully we can see thing through. I don,t dwell on my illness and if anything believe I have become more scatty than ever.someone asked about medication I,m on ropinorole,selegiline,domperidone,madopar,citalopram and sometimes co dydramol for pain. Once again thanks for your advice will keep in touch.:rolling_eyes:

#7
Thanks for all your letters my o/h is trying to ignore it i think he still thinks i can go to work , run the house , do the garden as i used to be able to do it all. I sometimes feel angry and want to have a good cry but it feels like theres no time for that , i have 2 daughters my husband no other family so i do have to rely on friends Sorry im the one moaning today
Chris

#8
I live alone and have no carer - this has worried me (and still does)
- but looking at / listening to carers stories on this and other
forums leaves me deeply horrified at the thought of becoming
someone's burden.
Never married and don't make friends easily - I'm a bit of a loner (my
family suspected Aspergers but was never diagnosed).

I do worry about the future as I won't be able to pay for much help and
would be loather to ask family - anyway there's only my brothere who has a job, wife and kids to think of - being an albatross around his neck does not appeal.

#9
Hello Marymo, My husband has pd and I am his carer so its a bit like you but reversed roles. My h had pd for at least 6 years and although I am totally committed to looking after him I do sometimes find it difficult. Its the feeling of helplessness not really knowing how to fix the one you love and I have at times said I cannot cope with it. I think to care for the one you love more than anything can be more difficult than caring for someone you are less attached to because you really cannot bear the suffering. Sometimes we say things that are not really what we mean. Maybe you have a really strong marriage and a really strong partner but its all a bit too much. What me and my h have found has helped us more than anything is not to have any expectations from day to day about health, or whether we will go somewhere or not. We dont make plans ahead we just do what we want to do each day together and spontaneaously. Sometimes his pd progresses a bit and then it relaxes a bit. I'd love you're h to join the blog but mine would never do that either. Good luck. Love to know how you are getting on. There is a lovely humerous book entitled Selfish Pig's Guide to Caring by Hugh Marriott, it is hilarious and also a real help. The author cares for his wife who has Huntingtons Disease love from Sunray

#10
Hi marymo,
Know exactly where you are coming from.My Wife does not understand what it means for us that have pd.She has fleeting moments of caring.In general though,it's as if she tries to bury things under the carpet.She gets bad tempered often and totally resents anything to do with Parkinsons.If I am not fast enough with the key in the door,then I get moaned at,parking straight on the path,anything really.It takes me longer to do most tasks,but there is little understanding from her.
Any time spent with anything concerning pd,local meetings,forums etc,she just rolls her eyes and is not interested.
I suppose I am mostly to blame,because I tend to try and act if I don,t have pd,not hiding it though.I think the true reality has only just begun to sink in itself with me.I diden,t take any meds for the last 2 months and realise just how badly I function without them.After a long letter hand delivered to my Neuro,my Wife and I both had an out of clinic time appointment,because I was quite bad.Having both realised now I think,just what the condition means and how the future is going to pan out.We both agreed for me to re-start my old meds under stricter supervision.
Will my Wife be more caring and understanding,probably not.However with the extended appointment with the Neuro.I think she now realises just what we both face.
I reckon it,s just as hard for partners to watch,they are often helpless by standers,the easy option then is detachment.This self preservation which to those of us with pd,seems heartless,is understandable really.In fact it probably shows they love us more.Well at least i'd like to think so.
Needless to say,you are not on your own.I hope that things work out for you.In our case,my Wife and I often at loggerheads,generally ends up with feelings out in the open and a clearing of the air.Better than being bottled up inside I think.
So,take care,look after each other
It should then all then work out well
Titan

#11
It's almost as if we read each others thought . We have been married for 53 years

.My husband is the one with Parkinsons When you love and care as much as we all seem to . ITS WE HAVE PARKINSONS >

It is very difficult for both parties and takes a time for both to come to terms with .. There is such a lot to learn about it and understand . Some people are more able or have the energy or the will to cope with everything .

Each day can be different , in our case we both have our moments but we had those even before Parkinsons was diagnosed . I think if most of us look back we have been living alongside Parkinsons for a very long time .

It is reassuring to hear your stories and I hope mine is just as helpful ..