My partner misses his old self, pre PD


#1

Hi, 

 My partner was diagnosed in March 2013, he is 62rs old. Its classed as mild........but not to us!  We don't feel the Sinemet is helping as yet, but see the consultant in two weeks so fingers crossed he may change the meds.

My main concerns are his complete lack of socialising. He was a "larger than life character" loud and funny....he hates how he feels now and struggles with conversation so is becoming a recluse!  I cant seem to assure him all his  family and friends love and still want and enjoy enjoy his company.   He tells me he "just feels like a spare part" at any social gatherings. He wont entertain support groups or asking  for any help. Is it just early days and normal to feel like this?   He misses his old self!  

 


#2

Hello Tilley

I m sorry to hear how your partner feels but I think many people on the forum will relate to it. The wise and wonderful Turnip, a forum member who is missed for his knowledge and advice, said that it can take several years to come to terms with a dx of PD . I was diagnosed 3 years ago and am still struggling with accepting it. When I get down I try to distract myself with things I enjoy, seeing friends and having a laugh. I firmly believe that exercise is very important plus ,for me, singing. Our local Park group has a singing group which is great fun and the general meetings are a great way of making friends and talking to people in the same boat.

It isn't easy but, as I have learnt, life goes on but you have to adapt.

I wish you both all the best and of course you need to discuss the medication

samdog

 

 


#3

Hy Tiley I would like to reply,without being offensive ,to your partner.

Hy I've been DX 9yrs  and I'm not going to say it gets any easier,because it doesn't,but life is what you make it. You will find things that you did without thinking ,you will struggle with,and you will get frustrated when someone takes over.You will try to hide your condition,and how you feel ,make excuses so you dont have to socialise. You have lost your old self to this condition,but as they say life goes on. My advise to you is if you dont feel like it don't do it ,don't try to please other people,Your family will become very protective and you will  find out who your true friends are.  Don't lose control of your life.

i have a very dry sense of humour, which i haven't lost and I really take the P... Out of PD I'm also very stubborn so it's not in my nature to do as I'm told. So I guess it doesn't change everything.Angel4u

 


#4

Hello Tilley

I’m very sorry to hear of your struggles. When I look at other people’s journeys, I understand why my symptoms have been described as mild - but when you’re in the thick of it, it doesn’t feel mild, does it?

I'm no doctor, of anything. But just on my own observations I could hazard a guess there are three things possibly going on here. There’s the straightforward shock of diagnosis which - as you can read in many posts - takes different people different ways. I'm the same age as your partner, and also described as “mild”. And most of the time I’m mild in my reaction, a bit bemused if anything. But I can get terrified, violent, self-hating - all reactions that, when I’m calm and rational, seem reasonable to have. Certainly it feels to me that the only “normal” that matters is “normal for you.”

Then there’s the loss of function. Other posters offer reasons to be cheerful, or at least for not mourning lost capabilities - but mourning for others or self seems to me to be part of the human condition. My 87 year old mother in law, a Person Without Parkinson’s but now quite frail and rarely the life and soul anyway, clearly mourns the loss of her abilities in walking, making her own meals, having agency. And it seems to me reasonable that we should too.

Third is the PD itself, the “non-motor” symptoms of which can be at least as significant as the tremor and freezing and the rest and can hit you like a sand-filled sock round the back of the neck. Read all about it here: http://www.parkinsons.org.uk/news/18-october-2013/our-research-highlights-impact-non-motor-symptoms-early-parkinsons

And there’s possibly a fourth - the meds. A mixed and entangled blessing. Can’t live without them, can’t live with them, in some cases.

Somebody posting recently summed all this up: be kind to yourself. At the moment, that’s the only advice I can really offer. When I find out what works for me, I’ll let you know, in case it works for your partner too. In the meantime, I’d certainly say hang on in there.

Very best

Semele


#5

Hi

I too am in mourning for the loss of myself. When you are diagnosed you grieve for the person were going to be and the future you thought you were going to have. There are said to be 5 stages of mourning...here's my thoughts in relation to Parkinson's

http://dialoguewithdisability.blogspot.co.uk/2013/01/mourning-loss-of-yourself.html

dr jonny


#6

Thank you all very much....Samdog, Angel4u, samela and dr, Jonny.

It all takes some learning eh? I learn something new about PD every day, because symptoms seem to change so much from day to day!  No visible tremor as yet  but a very "twitchy finger" we do have to take the P.... in what problems that one dam finger causes?

All your comments have helped very much, thank you all again.  All the very best to you all, xx


#7

Hi Tilley,

I was diagnosed earlier this year. PD was masked for 8 years by other problems. When I finally went on medication I did the same as your partner. I found socialising difficult. Also like your partner, prior to this I was very out going. Pubs, dances, walking, swimming, you name it I was up for it.

It was therefor very hard to understand why all of a sudden I shied away from it all.

This is how I am fighting back.

I started by going out at quiet times into pubs with just my wife. I didn't drink  a lot, just a couple of pints then home. I then had a meal or two out, again at quiet times.

We used the gently, gently, catchy monkey, routine. In real terms what we are doing is re-building my life block by block.

Yesterday I was in town. I saw my PD nurse. She is the biggest boost I get. She is brilliant. The lady is working on my meds for me as well as counselling me.

There are numerous people you can talk to on the phone, on here and socially.

This is one reason I feel strange. I got on the train yesterday and only one seat was available. Normally I would have let my wife sit down. I couldn't because I can't stand for long periods of time. As I sat at a table for four I quite clearly stated 'excuse me for appearing rude, but I have PD and need to sit'. Immediately a young man stood up and let my wife sit down. It is not all people who don't understand.

Later in the day we went to a pub. I don't know anyone from this pub. I sat down and my wife got the drinks. I still pay.....I have that privilege. Four lads near us put some music on. My wife liked it. I asked her for £3.

I then asked the lads if they would do me a favour and put more of the same on. I remained seated but the lads at the bar started to have the crack with us. I enjoyed the day so much I couldn't believe it.

It's not easy. We were once big strong independent men. I now feel like I have a neon sign on my head saying 'I'm f**ked'.

I am slowly learning the majority of people, as long as I am polite, will treat me with respect. Things have changed, so I must change.

Make no mistake it is bl**dy hard. I will not undersell the problem. My wife fights for me like i have never seen her fight before. She says why not, you did so for me, long enough.

So may I say your role is very important in your partners life. Building back shattered confidence is not something to do alone.

I read a post from Jim on here. It was inspirational. He is no wimp, but what he had to do, and went through, took more courage than all his rough neck days.

All I can say is good luck. I hope your partner can find his own inspiration. Remember how important your role in this will be. You will also need the patience of a saint. My wife has this quality thank goodness and stuck to her task. It is now paying dividends.

 

 

 

 

 

 


#8

Hi Orpheus,

                       Thought i had replied to you yesterday........no send button as such  i think?

Thanks for your response, helped very much. He read it too, emotional to be honest. All for the good i feel. I had not looked at this from a strong male point, makes much more sense now, thank you again.

  He is still a little in denial i feel. Not a man who can open up emotionally or discuss feelings. We will get there, and yes i will fight for him.  He has your "neon sign too" says the same as yours.

He likes a drink or two more than you i think, now that can prove a little dangerous! Taxi men don't help customers who fall out of cabs after picking up from a pub!! 

Yes life has had to change, and it will get better, i will ensure.

Thanks again Tilly

 


#9

Your very welcome Tilly. The very best of luck to both of you.


#10

Hi Tilley,

             It was well before Christmas the last time I spoke to you. I'm not sure if you are still around.

I hope your hubby got through the festive season OK. I had to make some adjustments. I avoided crowds like the plague where ever possible.

On shopping days I got the wife to dump me in pubs close to the shops she wanted to go in. I found if I am up front about my PD most accept me for what I am. I ended up having some good laughs.

My next step is more unusual........remember I am a guy who played football twice a week, trained twice a week, worked as a fitter in a quarry and liked pubs......

On Monday next I am joining the local Pilates group.....no you are not misreading that......I am plunging into a group of ladies who are probably fitter than I am now.

It was initially my wife's idea. Naturally I poo hooed it at first.

Then I met the ladies coming out one day as I was going down the road with my wife. She stopped to talk to one of them. They had actually been doing yoga that day, but they also did Pilates.

I wont bore you with details but I made a call to the lady who runs Pilates. She gave me info that some who attended were worse than me. She asked me to phone back again after Christmas.

In the interim period I spoke to my PD nurse who said it could help with my core strength. I have no idea what that is but I'm sure I will soon find out.

I am hoping for two things.......one is to be able to socialise with the group and two...get my muscles working as well as I can.

If you mention this to your hubby he will probably give you the same reaction as I did to my wife.

My wife didn't nag me, she was very crafty, I ended up thinking the idea was all mine.

Not to put too finer point on it I took the attitude that a faint heart never f**ked a pig.

So to hell with not giving things a go, I'm off next Monday to Pilates come hell or high water. I have no intention of carrying a hand bag, or wearing a frock.

If you'd asked me a few years ago to do this I'd have laughed. I think it is slowly dawning on my male orientated brain that If I don't get on with things now, I might not be able to in the future.

One thing I am sure of from the day my wife was in conversation with the yoga lady.......they will laugh with me, not at me.

I hope your hubby is making progress.

Orphy.

 

 

 

 

 

 

 

            


#11

Hi Orpheus

 

Must say first of all love to read your posts and poetry, brings a lot of fun into the forum.

The post you sent to Tilley rings true. I am the same age as her husband , and was dx three years ago. I still feel a little uneasy in company especially when eating a meal, we tend to sit in a corner so I don't feel  so uncomfortable. As you say it does'nt go away you just learn to live with it. It's good that you are taking a positive attitude towards PD, please let us know how you get on with the pilates/yoga I for one will be interested to know!

Good Luck and Happy New Year

Sheila


#12

Sheila, your curiosity concerning my Pilates  (I'm not doing the Yoga.......unless they lock me in after Pilates) is only exceeded by my panic stricken trepidation at attempting it. I am wearing double incontinence pants already and I still have 3 whole days to go.

I have ordered one of those prayer mat thingy's to save lying on a cold floor. If I don't succeed at Pilates, I will have to become a Muslim and I really don't think I will suit a burka.

The lady who runs it sent me a very nice E-mail and I have made her promise to send flowers should it all get too much for me.

I will let you know how I get on. Orph.

P.S. thanks for the good wishes and Happy New Year, those about to die salute you too. I hope no wrestling is involved.

 


#13

 

Hi Orphy

Thanks for your response, brilliant!!

Really made me laugh don't know where you get your wit from!!

 

Regards Sheila


#14

My peculiar sense of humour comes from seeing the silly side of things Sheila. It is nearly always sparked by comments made by others.

I find on here there are several very amusing characters who make me laugh. I very much value this humour, it keeps me positively insane.

Working in heavy engineering caused a lot of laughs. The reason being, the conditions were enough to kill a Rhinoceros at times. So to forget the miserable conditions we made each other laugh in order to get through the day. I guess it forged a sense of the ridiculous in my brain, which has stayed with me.

I'm not sure if you are frequented with this area, but one freezing cold foggy day in January, on Shap summit, in temperatures which would have made an Eskimos eyes water, we were laying track for the railway. One man got so cold he actually broke down and cried. He just lost control of his emotions......and these were not soft men I assure you.

Levels are used to get the track to the correct height and alignment. One man looks through a sighting board at another mans level held on the rail down the track. With the freezing fog this was difficult.

Mecca was sighting, Ted Lambert was holding the traveller (level board). Ted had gone too far, Mecca yelled out to him......... 'Too far Ted'. For the next 3 years on that job, poor old Ted was always referred to as 'Too Far Ted'. The enunciation was biassed towards the obvious.

On the day it caused 20 grown men to laugh like drains. It took our minds off the conditions. And that Sheila is where my sense of the ridiculous stems from.

My profile is brief, it states.....

Still laughing in the face of adversity. If I stop someone please start me off again.

I just hope it happens on bad days to get me up and running.

Regards, Orphy.......

Only two days left to Pilates. I have a mental picture of me staggering out of the W.I. in a state of complete disarray. My wife says I am being silly, she was dusting the life insurance policy at the time.

Imagine my grave stone.....

Here lies Orphy at rest,

He gave Pilates his best,

The women were rougher,

And a damn sight tougher,

So the poor man failed the test.


#15

 

Hi Orph

 

Yes I know the area well having been across that way many times with my hubby lorry driving, I should imagine its horrid in winter being so open. Like the bit about Ted and your ditty at the end!

Just been thinking about where I had heard your screen name before and it takes me back to my school days, I had to sing a song about ' Orpheus with his lute ' in a school competition. failed miserably (thought I could sing)! Lovely song though pitty I made a pig's ear of it.

 

Regards Sheila

 

 

 


#16

My prayer mat arrived this morning. (Pilates mat actually, I just call it that)

I unfurled it on the living room carpet, got down on my knees ( I should be able to get up again in about a week), clasped my hands together and looked sorrowfully at my wife.....no word was spoken by me, she just said, ''YOU'RE GOING AND THAT'S THAT!''

I am doomed.....doomed I say.

My wife say she will hoover round me till it comes time to go on Monday.

This little anecdote is clean enough to relate........

I have a friend who was a fireman. In the course of his training they sent a lady round to his station. Her remit was to educate them on political correctness.

They all sat quietly trying not to go to sleep when she touched on the subject of nicknames. These she told the assembled watch were unacceptable.

Still they all sat obediently listening.

She moved on to the next subject.

Two of the watch had been assigned another duty and told as soon as they finished to join the class. These two were now crossing the yard towards the station. The lady saw them coming and asked what they were called so she could greet them.

A firefighter on the front row casually looked across and said,''It's Podgy Dimp and Duggy Deadman.

The poor lady was at a loss for words as the entire watch rolled about laughing.

It makes the world go round.

Orphy.

 

 


#17

Hello again, Orpheus --

Good luck with Pilates.  I think you'll enjoy it.  I know Tai Chi has made a great difference to me, both physically and emotionally.

I can't resist repeating a story I've told before, but long before you joined us on the forum.  My first introduction to pd humour:  On my first visit to a pd clinic in California, I sat glumly in the waiting room.  A man shuffled in and asked the receptionist where he should report for the pd exercise class.  "Beginning or advanced?" she asked.  "I don't know," he replied.  The pd patient sitting next to me spoke up, "Just go on in.  They give you a test.  They knock you down, and if you can get up, you're advanced." 

Happy New Year!


#18

I like that anecdote J, it fits in with my sense of the ridiculous.

To you and Sheila........

I survived. I wandered into the Lions den to find the only other man  who had attended last year, was no longer there. I looked round at the smiling faces and wondered. Had they disposed of the body?

The lady running the course put me front and centre. A fleeting thought crossed my mind......they wanted a laugh.

Now I'm not one to belittle ladies, in fact life has taught me my place, (under the table when the decibels rise), so I started to follow the instructions without question.

After half an hour I was knack**ed. The teacher had not even broken sweat. The ladies either side of me were bobbing about like two year olds. They were approximately the same age as me.

I managed the full hour. I was sweating like a pig in a bacon factory. I sat on a chair at the side to die quietly after it was over.....oh! the relief was enormous!

The lady who has MS and attends was the first to talk to me. She was a lovely little Irish lady. I started to feel more at ease. It was thanks to her that I had the confidence to join. The teacher had told me about this lady.

I had to take my trainers off to do the exercises (so I couldn't run away probably). This was not good news. I couldn't get down to fasten them to go home. A lady saw me trying and after picking me up and dusting me off she told me she was a nursery nurse and tied my shoes for me. She did it a hundred times a day so one hundred and one was no problem.

I felt like I'd been through a mangle for quite a few hours afterwards. Then the benefits kicked in and I felt better than I had in ages.

I have a hospital appointment next week so I can't go, but I will be back the week after.

Orphy.......I'm smiling!

 

 

 

 

 

 


#19

Orpheus, I'm so glad your experience was favourable in the end.  That's the strange thing about exercise:  you think it's going to kill you when you're pushing yourself to keep going; then afterward you find you've been energised.  No exercise for me today, though.  I'm off to the doctor to see if I have pneumonia developing or just a heavy cold.  Whatever it turns out to be, it was a Christmas gift from my sister!

Have a day full of laughter --


#20

 

Hello Orph

Glad you survived your ordeal!  Was'nt that bad was it!  At least you survived to tell your funny story, and know just how you feel about trying to do your shoe laces, and doing your coat up and eating meals etc. etc.

 

Think it envigourates you when you do a little excercising!

 

Keep on moving and a-grooving

 

Regards Sheila