My partner misses his old self, pre PD

About me Introductions and personal stories
21

This is just a general message to anyone who has read or contributed to this page. Anyone reading my normal drivel will realise this is my serious side and not my usual flippant stuff.

First.......I need to thank people on here for support you can only get from fellow sufferers, both male and female. I will not be touching on anything negative, so don't turn off now. All the support has been positive.

This next bit relates to the problem discussed in this post. What you will read is not a cure, it is a personal way of dealing with it. It might not suit all, but I feel it does apply to others who have contacted me.

I have forged ahead with my 'new life'.

I will not say it is easy, but the benefits are there.

As you know I joined Pilates.......I now share a room with a whole heap of ladies who are far fitter than me. The instructor is kind and helpful, without being condescending, the other ladies are friendly and welcoming.

Would I have done this before my diagnosis......No!

Would I recommend it now......Yes! It's brilliant.

It has beneficial effects mentally, as well as physically. I thought being the only man there would be embarrassing......far from it.....a lady with MS came to talk to me and within minutes I knew I was among friends 'to be'.

On the strength of this I went this week to the computer club for the first time. Again apprehension was the biggest stumbling block.

My wife put my lead on and dragged me down. I was up front with my condition and my socialising problem.

The lady who runs it placed me next to her husband at a table for four. She must have done this deliberately. I was made extremely welcome yet again. Far from it being just computers, all manner of things were discussed. The ladies husband pointed out other avenues of social interaction going on in our village.

I came away looking forward to our next meeting.

Far from my other life of being in pubs, all this is actually giving me a far reaching insight into other aspects of my life. Things I never even dreamed of.

I am going for a meal with friends in a pub in our nearest city on Thursday. These two friends don't give a damn about my condition. They have told me in advance all will be well, no matter what we do.

Slowly but surely I am building this very different life. It is not a boring one, which at first I feared.

My wife has played a huge part in all this. She talks sense to me, when Madopar talks nonsense to me.

Her opinion.....my sense of humour is coming back to what it was, I have more things to talk about and I am looking more relaxed.

I must now mention someone on here who has also supported and encouraged me. This person understands from personal experience why and how I have had this lack of confidence. Tips about being up front and how to go about telling people so they are forewarned.

What to do if they reject a sociable approach and realising it is not my weakness, but the weakness of others that is the problem. All longer serving members than me will know her well as BA. Despite her own problems she has taken the time to help me. She is not the only one either.

I still have problems and things I must overcome.

I have a chain of support I am now beginning to realise is far stronger than I ever imagined it could be.

I know I must do this myself, but it sure helps when the crowd is behind you, when you thought everything was against you.

Letting go of a lifetime of male macho ego and being the big strong  'I AM' is not easy. What I am learning is strength comes from far more than just the physical aspect. Mental strength, which ladies seem to have more of than us physically strong men, is far more important.

My chain of support is my wife (who is brilliant....disregard all my jokes about her, she is lovely)

My PD nurse Vicky Travers, who is magic and has so much time for me. She is available, caring and keeping a close eye on my condition.

My doctors receptionists who deal with medication prescriptions and queries.

Friends who boost me up.

And last, but certainly not least, PUK and my advisor BA.

Is it possible to build a second life of different parameters? I think so. I certainly hope so. It will be a slow process of little by little. Given time it should be achievable.

Orpheus.

 

 

22

 

Hi Orpheus

Glad you are still going to pilates. The reason I wanted to know how you got on with it is because I am going to attempt to do it, or take on yoga, to keep me motivated.

I am looking for something to do when I retire later in the year, because my work keeps me supple because I know I have to keep moving.

Yes I do think you can build a second life of different parameters, it helps if you stay focused and not give in to PD, as I have learnt to do.

 

Regards Sheila

23

Sheila if I can do it anyone can do it. The lady who runs ours, has slightly modified some exercises for the lady with MS and me. We sit on a chair for odd ones.

Far from feeling inadequate about this, I found exactly the opposite. I got nothing but encouragement.

I ache in places I never knew I had places. I also feel uplifted and very positive. I am sure you will enjoy it.

I don't know much about Yoga. I think it requires a little more subtleness than I posses at the moment.If you are fairly active it would probably suit you. I have seen the ladies coming out and they are all ages.

I have also been told about meditation classes. I am intrigued. I am undecided. I may give it a go, my wife thinks it might help.

It's a bit outside my normal sphere, but these are not normal times. I am pondering this one.

I have a lady friend who studied under the Maharishi Yogi many years ago. We have been platonic friends for years.

When I was divorced (over 21 yeras ago) she read to me once. It was a very peaceful and enlightening experience.

You can believe this or believe it not, but I swear it is true.......She trusted me as a friend and let me stay the night. She is a very pretty lady.

We slept in the same double bed and had the most relaxing nights sleep. No hanky panky went on. It was just amazing and I still remember how she made me feel with her philosophy and reading.

So maybe meditation is a possibility.

It is not the same lady as runs the present classes I hasten to add. I don't expect they sleep together either.

Who knows it could be something to think about for the future.

I am looking at life totally differently now and seeing so many things I bypassed before.I hope you find what I have found, if you do decide to take up Pilates or Yoga.

It took a lot of support from others to get me where I am. There is a long way to go yet. I am really grateful for the encouragement you and others have offered me.

Being a lady you have more common sense than some of us daft males, so you will take to it like a duck to water if you decide to go.

We really are a daft breed, we live in a world of pubs and football and miss out on so much. 

With best regards Orpheus.

24

I have experienced technical difficulties with the Orpheus account. Saturn is now Orpheus Sheila, if you need any further contact. If you require authentication ask Blue Angel she knows me well and will vouch for the verification.

25

Orpheus, your recent posts have been so pleasant and cheering to read!  You speak with a new wisdom, thanks to your courageous forays into new situations.  Some people look at me as if I've lost my mind when I say that Parkinson's is, in a sense, a gift; our challenge is to find out what to do with it and how to benefit ourselves or others through it.  But your words reflect the same principle.

I would suggest, too, that your challenge was much greater than mine.  You were living in a physical world and have now entered and are learning about a mental or spiritual realm.  (I don't mean to imply that you didn't think before now, of course, just that your life emphasized physical over mental activities.)  I was always of a scholastic turn of mind and lived in my mental world, so an ailment that limited my physical abilities wasn't as great a disaster for me as for some others.  My only difficulty was developing the self-discipline to leave my world of books and language long enough to get the physical exercise that a pwp needs.  

Your changes in life have been much more difficult than mine.  I admire your determination and applaud your successes! 

26

Hold the applause J. I know I have a long way to go yet.

You are very accurate in your assessment though. My wife would fully concur with it.

One thing I have in my favour is my lack of arrogance (I am definitely open to good ideas). I know and accept I need help, that's a big hurdle to jump. I think I'm over that one with reasonable success.

I have found that the best encouragement comes from gentle persuasion and a little cajoling. My wife is very good at both.

Add to that equation the information and support I get from the likes of your post above, my PD nurse and others who contact me regularly and the pressure is eased even more.

That J is what I have now identified as the second biggest hurdle.......pressure.

It is very helpful being on here.

I don't say that for effect, I say it because it helps to train my mind to be more receptive over a period of time, then when it comes to the moment of reality, it gives me the confidence to push back the reticence and go for it.

I find it very strange to come home after what most people would take easily in their stride and feel like I just climbed Everest.

The exhilaration of such things is slowly becoming like winning a hard fought game of football, when you score the winning goal in the last minute (sorry about the male based comparison, it's my only relevant equivalent in terms of entertaining activities).

If I can keep each small step firmly fixed in my mind and recall this feeling, I have half a chance of success.

Last Thursday I went to a pub for lunch in the big city with my wife and two very good friends. Prior to setting off the hebegebies set in as usual. I sat down and talked to my wife who pointed out the obvious, very gently and persuasively.

I thought about my friends on here and how much I wanted to be able to tell them I was successful. I thought about how much my wife wanted to enjoy her day out like we used to. I thought about things BA tells me on a regular basis.  I thought about what it means to my good friends who want me back in social gatherings.

I took a deep breath and remembered my old gangers saying from many years ago when he used to say (very crudely) 'a faint heart never fu**ed a pig' ..........and set off.

I had a marvellous day. The lady of the couple we went with said on the train back.......'you seem just like your old self to me'. If only she knew how much that meant to me! She never dwelt on my condition and never once preached at me. Mind you both her and her husband are very good friends and also very astute.

In psychology, which I was taught in my last years of work, Human Givens states clearly......Only those who want change, will change.

So I hang on to this and messages of support.

I hope in some small way, as time goes by, to be able to help others. Some already say this is happening and that makes me feel good, because you can't just take, you must give as well. To maintain the balance is very important.

So I thank you for your kind words J and I hope you can take something form this which might help you. We're all in this together and we are all different as you have pointed out. The common aim is universal though.......help each other.

From Orpheus .....now Saturn (due to technical glitches).

 

 

 

 

27

Thanks for your response, Saturn.  Trust me -- I always gain something from reading your posts.  Sometimes it's a laugh; sometimes it's a technique of coping; sometimes it's appreciation for the camaraderie of forum members.

By the way, I think I would really like your wife!  She sounds like a wonderful woman.

My best regards, as usual --    J

28

My wife is very caring J.

I spent ten years, after a bad first marriage, looking for someone like her. I have now been married to her for over 20 years and can honestly say I have never regretted it for a minute. We laugh like drains, we love like characters in a romantic novel, we share everything.

When I first met her I told her after the first week I was going to marry her. She was highly sceptical. So I gave her 12 months to make up her mind and when 12 months had passed, I asked her officially.

I took her to Gretna Green in Scotland where all the young lovers used to elope to........it was the best day out I ever had.

She posses the rare quality of being pretty on the inside as well as the outside.

I sometimes make jokes about her, which BA says I shouldn't......but it's only in fun. We both see the funny side of things. We have never been prim and proper.

BA has actually spoken to her several times. That's why she is probably protective of her.

You would definitely get on with her J,  she is liked by all my friends. I will give you three short words which describe her.......

Honest

Loyal

Loving

What more could a man ask for.

I may never win the lottery...........but I am a very lucky man and I know it.

Morph, Orph, Or, Saturn. Call me anything you like as long as it's not late for dinner. XXX

 

 

29

Saturn, I think maybe you have already won the lottery!  And it only took two tries.  Not bad!

My husband and I treasured every one of our 40 years of marriage.  We knew we were more in love at the end of the marriage than at the beginning.  When the match is right, love deepens and keeps growing.  I'm happy for both of you!

30

Thank you J. I'm glad you have experienced the same thing.

I no longer posses the male macho ideology so I speak as I feel and with honesty. It is not soppy to be in love, it is a gift.

I find the word that is most important as the years roll on is compromise. A little give and take, remembering to allow your partner freedom of expression and to have girlie time with her mates, goes a hell of a long way.

Trust would be the second most important one for me. I won't go into first marriage territory, but I value that highly.

I love talking to ladies, not for any other reason than they are far more open and don't get stuck in football arguments. I gain so much insight into life from them.

I envy you your 40 years. I frequently tell my wife we should have met 20 years earlier than we did.

My daughter has adopted my second wife as her Mum. She is also official Grandma to my Granddaughter. They chat for hours together.

It was ten very long years trying to find the right lady, but well worth the wait. My wife's commonly used phrase is......Giz a hug. That tells me all I need to know.

Keep your memories tightly held J......they are pure gold.

31

You are so right, Saturn!  Memories are the key.  Hearing about other happy marriages like yours doesn't make me envious, just pleasantly nostalgic.  Keep enjoying your time together!  (As if you needed to be told . . .)

32

 

Hi Saturn

It's ok for you men to go to the pub in a group, if a went with my pals everyone would think we were on the pull!! As for football I used to hate it until my grandsons came along, all three are footballers in the local teams so now I really enjoy it. Hubbies just upstairs listening to Leicester on the radio, our local team, they are doing really well. Sunderland is my home team and they are going to Wembley. It's all happening. 

Anyway I've made my mind up about pilates, if you can do it at your time of life I can do it, I totally admire you.

 

Take Care Sheila

 

 

 

 

 

33

Hi Sheila,

I went to Pilates on Monday. The ladies are about my age and some are a bit younger. The lady who runs it is about 30. She takes good care of me. I'm sure you will find the same if you explain any problems. You can do as much or as little as you want.

Physically I am 63, mentally I am still a teenager. My friends are nearly all the same age apart from one very good lady friend who is 50 and married to my mate.

We have two pubs in our village. I guarantee you, if you were in either one, you would be looked after with respect. We are used to an influx of caravanners and holiday makers in summer. We enjoy meeting new people and all the local lads I know would chat, but not chat you up unless you made it obvious you were on the pull and single and they were single.

Due to meds I have not been in the pubs lately round here. It's the side effect of Madopar. I am working on it......hence Pilates and computer club.

My wife has bought  a lead and now shouts walkies to me. So far so good.

Morph

PS.......Gus Poyet has improved Sunderland no end. If they keep going at the present rate they should stay in the premiership.