Sound bite for Younger Partners


#1
I am 50 and my husband has was Dx 10 years ago. He copes amazingingly well but it is so tough. I am frightened by what the future holds for us both. I have just helped him to get to bed tonight when his tablets have just not held out for the night. I dont mind but I know he hates having me to help him get undressed and get him in to bed. How much we can take for granted the normal things we do in life when they become such a job to do when you are battling with such a cruel condition. I hate what this is doing to him. We have a fantastic relationship spanning over 30 years but this has so changed the dynamics of what we had. You try and be strong but this is heart breaking. I can take a break but he has to cope with this. I wont let him down.

#2
Hello Suzie,

How I agree with you, my husband has had pd for thirty years and is still only 69years old. We managed at home for most of that times but two years ago he had to go into a nursing home. It is really hard to leave him especially when although quite nice people the carer's haven't a clue on basic care. This very difficult condition especially when diagnosed before 40 is heart breaking for all concerned no matter how well you cope.We must all hope that with new research that at least the management of this condition will get better.
best wishes
vivian

#3
Susie,

No magic words of wisdom, my wife was dx 4 years ago, when just under 50, looking back the symptoms had been there for probably another 5 years, but caused no real problems. If you think too deeply about what has happened and beat yourself up about what might happen you could drive yourself mad ... don't.

Do whatever it is that makes you happy, sometimes it insn't the best idea to continually talk about it as often it is merely a reminder of what is happening to you. Surround yourself with supportive positive people and to hell with everyone else if it helps, in truth only your family, specialist and trusted people really know what is happening, in addition to other people with the same condition.

Laugh as often as you can, don't get too low when days or things get ontop of you .... they do and they will, tomorrow will hopefully be better, if it's not, then the next day will.

Remember this isn't a terminal condition, well not really any more terminal than anyone else, PD or not. Keep smiling and enegerise yourself off other people.

Everyone deals with it in their own way, some don't want to shout about it or be a flag bearer, and not being a particularly religious person, I haven't got the answer to the question "Why the love of my life" ..... other than "WHY NOT".

Try not to be overly upset or bitter, people often don't understand about your situation, often the people who you think know you best, and family, can often suprise you with their insensative comments that occasionally beggar belief ..... that's a failing in them, not you, so treat it and them with the contempt they deserve.

It's tough sometime watching your 'better half' suffer, it is unfair, it's s***, but thats life.

Also be good to yourself sometimes, you need your strength to recharge your batteries, you're not being disloyal, but there's no point in the Captain jumping overboard if his ships going down. Researching everything isn't always good, and opinions and advice is just what it is Opinion and Advice ... not instruction.

You can occasionally feel alone, but your not .... the love of your life will always be there, and need you ...... Lifes a tough game, there will always be people worse off than you, and amazingly I quite often find they are the ones that moan the least. whereas the type of people that usually whinge the most can often be found down at the local tennis club (or similar) bleating about the crust on the sandwiches curling up.

Smile, laugh and give yourself a pat on the back sometimes, you deserve it as I have an idea what you're going through, don't beat yourself up for previous, current or future mistakes ... you're doing the best you can and nobody could do any better.

I herewith award you the PD equivolent of the Victoria Cross

:laughing:

#4
Hi catalyst
I've stressed and worried about the future not for me but my kids,one in wheel chair and one aspergers whom I've pushed around for 14 years in pain but making the most of it everyday.my symptoms got worse last year and was dx stage two pd.i don't rest I keep going all but slow,I can sleep at night and have trouble with everything to do with muscles.blinking,swallowing,choking,biting tongue,cramps everywhere,weak joints,fluttering heart,freezing,dizzynessf,toes curling,concentration,slowness,trembling,bells palsey giving me a constant head aches since April.apart from that I'm ok but do feel alone,my family are living in front of me unaware of the twinges and pain and restriction that I'm going through and feel my pd is holding them all back.i feel I'm now a burden on the family instead of the help.the mother in law thinks I putting it on. Cause somedays in better than others.she doesn't see me after an in period.sorry i gone on a bit.just going on the wii fit to exercise my arm.all the best b.john

#5
Hi potter64130

I'm assuming you are the mother of the two children. Anyway, if you are the parent/carer of disabled children and even if you are in employment you are entitled for Social Services to give you the Carers Assessment which you are entitled to by law. The helpline top left should be able to put you in touch with a PD UK welfare assistant who can support you pursue the assessment and other help which you might not be aware of or have the time to pursue yourself. I take it the mother-in-law won't have been looking for help as she obviously feels she knows better than your neurologist as to the reality of your condition!!! I won't trust myself to comment further.

The helpline above left is there to give help, support and informed advice - PLEASE DO PHONE.

Best Wishes

#6
Hello Catalyst and Potter64130

I totally agree with you Catalyst with all you say in your post as it is the best way to cope with this condition or any other for that matter. Although I agreed in my previous post that it is heart breaking you still have to adapt and live your life the best way you can.

Potter have you tried to download some of the publications from PDUK as they may help your family to understand how you feel. I am not sure if they still produce dvd's that would be suitable I hope so as years ago there were several video's that explained how it really was for people with pd and I used them all the time when giving talks to care homes and respite units. To actually see the visual effects of PD rather than written information is so much better to get people to understand.
Your situation of people not understanding that you can do something one minute and not another is one of the biggest problems for pwp's.
Do you belong to a branch or support group at all as you would meet many people there and it lifts your spirits t be able to share and exchange idea's and experiences.
best wishes
to you both
vivian

#7
Hi Catalyst
What wise words. Thank you for taking the time to write all that you did I cannot tell you how much that helped me to read and it all makes a huge amount of sense
I can already identify with what you said.
I was having a tough day when I went on the forum. I am normally a really positive person and so is my husband. Having a better week and we had some good news yesterday which will help our financial situation. thank you:grin:

#8
Hi Suzie,

Just remember "We're all on the same train, that's on the move and as yet we don't know which station we're stopping at .... So we might as well enjoy the ride"

Be strong ... and be kind to yourself

It could just have easily have been you rather than the love of your life, and they would probably be having the same doubts as you.

We weren't born saints, nobody was! and amuse yourself when dealing with people who think they are.

Sometimes dealing with everything that comes your way is like 'Juggling Soot or Knitting Fog', in fact thinking about it, it's probably not that easy.

'Life's a race Sometimes you're ahead, sometimes you're behind, but at the end of the day the only person you're racing is yourself'. It can be fun not being perfect and people who understand your predicament come from the strangest places .... You'll know them when you meet them, and you normally don't see them coming.

Keep smiling .... and keep in touch

Catalyst :laughing:

#9
Hello Catalyst
thank you for the wise words once more. I have come back to these several times and re read them as they are very encouraging and it feels like you know exactly what we are going through.

My husband has recently started to cut back on his hours at work which has helped and someone from our branch put us in contact with an information support worker who has been very helpful.

I am trying to think of ideas for alternative ways for him to spend his time as I feel sure it wont be long before he needs to stop working.

I noticed from an earlier posting that you have gone through a similar time.

Any ideas would be welcome.
thanks in anticipation

:grin:

#10
Suzie,

My wife was made redundant, so the decision to retire was taken out of her hands, it knocks your confidence and self esteem , as I think we all need to be wanted in some way, however the cards are dealt and you pick them up and make the best hand you can.

Health needs to be managed, but the conclusion I drew from a very early stage is YOU and YOUR OTHER HALF know the answers to the vast majority of the questions.

Don't compare yourself with anyone else, everyone will be at a different level, up or down. Everyone will deal with there particular stage of the condition how they are made to deal with it. there is no normal level, and always remember, even the professionals who monitor and treat your Hubby, haven't got the condition.

We are always given health advice from the medical profession about how we should live our life, but if that's the case and they take their own advice, why don't the majority of Doctors live to be 100?. Believe it or not they are as vulnerable as we all are.

What is it that you both have always wanted to return too, or take up? .... Do it.

My better half took up horse riding again and it's doing her the world of good, the horse and the exercise is in some ways better for her than the medication and achipucture and physio and advice.

Also be good to yourself, I'm sure your hubby will be energised seeing you happy aswell, bet you feet like you're always riding the motorbike with your mate in the sidecar?..... Well give him a go with the steering and you take a rest in the sidecar ... it's fun for you both.

You,ve been married for 30 years, us too.... lots of fun in the bank, but that's where it is ..... Both of you open a new Joint Account, and don't overly worry about the future ... that's just what it is.

Figure out the things that make you happy and do them .... and don't hammer yourself when you feel low, you will do, but there isn't any other person walking this planet that wouldn't.

We don't ask to be hero's, we probably don't want to be in the spotlight, but by merely being there, people like you, Suzie, will ensure you are the head of the queue when it really matters.

Be good to yourself .... keep smiling .... and on occasions the whole world can kiss your A**. The world can be a dirty place, but I've never seen a happier kid than one who's playing in it.

:laughing:

#11
Hi Catalyst
Thank you for your response. Wise words. I wonder how you know all these things.
Great advice and sensible not depressing. My husband is a great guy and we have had some amazing years and as you say still more fun in the bank but it is tough adjusting. I try and focus and what we can do and not what we cannot do.

thank you for responding. :smile:

#12
Well done everybody ,such wise and profound words . I agree with each and everyone

the other morning as I was helping my husband get up and all that it entails he started on about how it wasn't fair that I had to do so much for him . Well I haven't !got! To it's second nature to do it .I said to him we are not the only ones just think how many other peoplewho are doing the same things we all just get on with it whether the sufferer or people around them .

No it isn't easy for any of us but if you can keep your spirit's up it is easier all round . The occasional times when he does get low I start singing and then he ends up joining in . If it happens to be not such a good day I tell myself it will be better tomorrow and very often it is .

When we first started on this journey I would get confused/ frustrated /upset about how when we got up in the morning he would not be the same as he was yesterday . I now take it a day at a time or even hour to hour and am thankful we are still together
/ upset even the mornings when we got up and he wasn't the same as the day before

#13
Hi Johnnie,

Your post reminded me of a fit of depression (bear with me) I once had.

With a tear in either eye, I bemoaned to Mrs Eck that I had become a burden to her.

She took me face in her hands, looked into my eyes, dried my tears and tenderly told me:

"Mr Eck, what do mean 'became a burden', you've ALWAYS been a burden to me!"

I wont say she cured my depression, but now when I feel low, this creeps back into my head and makes me smile, and helps turn my thoughts around.

[u]FYI[/u]

“Bear with me,” the standard expression, is a request for forbearance or patience.

“Bare with me” would be an invitation to undress.

Lucky I looked that up, would have been embarrassing, and earned me a life time ban and an entry on to the sex offenders register.

#14
LOL (a rare thing) Mrs Eck is an icon.

#15
Hi Eck sounds a lot like living in our house . You are reaping what you have sown .

We have been looking after each other for the last 54 years , I am not going to stop doing it now when he needs me the most . Looking back Parkinsons has lived with us for more years than we realise .

#16
Soz about delay, lost the thread there. Tends to happen.

So 54 years, thats only 24 more than Mrs Eck and I.

Well, that took a lot of effort to find this thread.

Oh that was the other thing Mrs Eck said.

Apparently my conversation skills are rubbish, The dampt cheek of the woman.


Dont know where she gets that idea.