Hello


#1

My husband was diagnosed with Parkinsons about 10 years ago, just a few months after my elder brother had the same diagnosis.  We have continued to work and get on with our lives, but my husband was finding his work (he's a lawyer) increasingly difficult to cope with, so we finally both retired earlier this year, age 61.

He is now adjusting slowly to his forced retirement, but finds it very frustrating, at times getting angry and depressed - he feels he has somehow failed.  I suppose I am looking for support in how best to help him to get through his mood swings so that we can enjoy our retirement as best we can.  

I found this website entirely by chance yesterday!  

 


#2

Hi StellaM,

Welcome to the forum.

Have a look around the website; there's a lot of information here, including all sorts of publications and details of support in your local area.

I'm sure there will be other forum users who understand your husband's frustration and might have some experiences they will share.

Please feel free to give our helpline a ring on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm) if you'd like to speak to one of our trained advisers (which include specialist Parkinson's nurses). They can provide information and advice about all aspects of living with Parkinson's.

Best wishes,

Ilona (Moderation Team).


#3

Thanks Ilona - our local Parkinson's nurse has been brilliant and we are getting a lot of help now.  For the first 8 or 9 years we have seen the neurologist privately through health insurance and then for the convenience of appointments on demand to fit in with my husband's busy work schedule of court hearings, but then it was suggested to me that we were missing out on a lot of support given on the NHS - and that was so true!  For all those years all we had was the specialist - now we have the Parkinson's nurses, physio, helplines and a host of other stuff we didn't even know existed.  

My husband has been a little in denial up to now, preferring not to read up on what might happen in the future.  I have persuaded him to read a couple of the leaflets on this website recently, particularly the one on sleep problems, and hope to get him involved.  For now, I am happy to find somewhere where I might find a little support too!  That might sound selfish to those who are suffering from Parkinson's, but I am having to come to terms with the fact that my role as wife is slowly turning into the role of carer and I know we are going to need all the help we can get.  

 

 

 


#4

Hi Stella 

the best advise I can give you is for you both to get busy with whatever your fit for , stop thinking about PD and live life to the full you only get one so try and enjoy it , some might give you sympathy but no me am all for capers and fun cause if you go on thinking  your gonna fall you will fall !!!!   So please think of all the nice things in your life and focus on them , you probably think am cheeky but am right take care of yourselves 

Ian xx


#5

Hello and welcome 

I have been diagnosed for 4 years and worked as a Senior Charge Nurse, retired November last year.  

Yes your role may change but please allow your husband to continue doing the things he can do. Have you made contact with your local support group? When I was first diagnosed my husband found the local group in Aberdeen and this has really been of great support for both of us. It's not everybody's cup of tea but it's worth looking into. 

I hope you find the help and support you are looking for, there really plenty folk on here with lots of words of wisdom.  

Best wishes 

Helen. 


#6

Aye aye Helen 

dam the bit your the nearest to my city dulnain bridge capital of the highlands , if your ever up oor way come in by the wife and ma sell we'll make you more than welcome just up from the heather centre man  it's a small world all the best 

Ian xx.       (Ps fit hospital wis ye at ?) 


#7

I agree with Bethankit, try to find a local group. My group, Stafford, holds events for everyone, and some just for carers.

I also find it useful to find out as much about my Parkinson's as possible. This gives me both practical skills and a sense of control, moving away from being a victim to being an activist.

John


#8

Hello Stella


I have had Parkinsons for possibly 6 yrs now and compared to some i manage with day to day life quite well. We all cope with PD differently, it can depend on how progressive the disease is within a certain individual. For a professional  capable man who i presume had a lot of control and influence with the career he had, to now having to focus his thoughts on a retirement shadowed by ill health, it's not surprising your husband has been depressed. Retiring in itself is a huge milestone, I retire on Wednesday at the age of 51, reason being whilst i am capable, i want to live and do the things i enjoy in my own time. I found over the past 8 months i have just lived to work and struggle when i do work. My main roll in life is being mother and wife so i haven't lost that, i am still as busy as ever with what that roll entails. I am sure that your husband feels quite grieved for the loss of what he was and what he worked for all his life this coupled with the illness is a double blow!.


Stella you said that your husband had a certain amount of denial about his condition. i suppose that could be said about me from someone looking on because i make no secret about the fact that i limit the amount of information given to me by the medical profession and i ask very little. If i need to ask then i will but knowledge of symptoms that affect PD sufferers that may or may not happen to you would be a long time in my thoughts and worry me, blocking my ability to get on and enjoy the positives my life has in store. So it may not be denial it maybe survival.


When you love someone, to watch them struggle with an illness can be quite unbearable, I would rather have all the conditions that i do have than watch any of my family go through it themselves. Reason being it is simply easier!. I don't wish to sound flippant to anyone reading this, as though PD is easy to live with, but to have no control or ability to improve the health of a loved one must be so difficult to cope with too. The whole family is affected.

I hope your husband finds a way to manage and adapt himself to the things in life that he can do and can still enjoy at this moment in time, not looking ahead too much ahead. Good luck

Rachel


#9

Thank you all for your words of support - it is good to feel there is somewhere I can come to ask about things.  

Stella

 


#10

I have had pd 3 years am 65,, was very active. Can't tolerate the tablets So only on patches.

can only hobble to to toilet but go out in wheelchair. Join your local PD group, and pd nurses are brilliant.

i do a lot on line, can help others by on line chats. I get very frustrated asking for help,can understand.  I also go to help with research. 

A few ideas X 

try to keep positive 

brenda,X k


#11

Aye aye western 

I don't mind the tablets but that patches are a pest I feel like a bike tube getting a puncture fixed  but there you go we are all different 

take care Ian xx


#12

I have been lucky Ian patches ok.

ha ha bike. Tyre !