*Hello


#1
Hi to everyone on here. I am new to this forum. My hubby has been dx for about three and half years although we were told he had already had PK for about twelve years. Looking back now we can see that. Unfortunately after the first year of dx he seems to have deteriorated pretty quickly and both his and my life have totally changed. I feel like I share a bungalow with a friend rather than a husband. I was only 55 when he was diagnosed and all our future planning seems to have gone AWOL .:rolling_eyes:

#2
Hello parkywife,

I do understand how you feel as my husband was only 39yrs when he was diagnosed and is now in a nursing home. There is no easy anwser i am afraid life is different and relationships change but your love for one another will see you through. We tried to make the best of everything and turn a negative into a positive not always easy I know but it does help if you can make adjustments and still enjoy some life together. Where we would go for meals with friends they all understood that it was now too difficult for us and they come to our house and insisted they provide a pudding or some like that which made them feel easier about not taking their turn so to speak. Going out in a group with other people with pwp can really help and you gain a lot of new friends at the same time.
As I said we were both very young and I was also disabled with a chronic back from nursing but we have some very happy memories of our time with fellow pwp's and carers so I hope you have some near you and then you will feel a bit better about your situation.
Good luck
vivian

#3
Hello Parkywife and everyone

I have been lurking here for a couple of months I think, reluctant to introduce myself but your 'name' tempted me in. My husband was diagnosed in August last year after a tremor developed in April or May. At the moment he is not taking drugs, having been offered ropinerole or neupro patches. I am terrified at the idea of these drugs and their side effects.

At the moment he is trying alternative treatments and seems to be OK though he still has the tremor and lots of stiffness (which he has had for years...not sure if its just him or the parkinson's.

I know what you mean about the future. I think the hardest thing about the diagnosis was that as a dreamer I had lots of ideas of things we would do and suddenly there was no way of knowing what the future will bring. I wish there were more husbands and wives and carers posting here as it would be nice to have support and conversation with similar. Oh well I've come out now.

Hope you don't feel hijacked. Perhaps i should have moved the stuff about me to another thread.

#4
parkwife hello and welcome, you post where ever you want to. The good thing is that you have posted. Hope to see you around the forum,.

Radz x

#5
Hello Parkwife and Parkywife and welcome to you both.

I am carer to my husband who is 76 and was diagnosed 4 years ago. He has since also developed Parkinsons Dementia - a double whammy.

I am an intermittent poster on the forum and tend to read more, much more, than I post but have found that there are other folk here who are in the same situation and who will always have a comforting or cheery word if you are down.

We surely can't change our situations so we have to make the best of it. I have found that knowing there are others in the same boat helps. It is also important to make some time to do things for yourself. If I have two or three hours off - with somebody else keeping an eye on my husband I feel refreshed and able to carry on.

With my very best wishes

Worrals

#6
Hello and welcome ladies, I'm glad to see that you have revealed yourselves.
I'm sure that you will both find the forum informative and supportive.

I was 50 at dx, which was 12 years ago and I worked for 8 years as a full time social worker following my dx. I retired 4 years ago but I probably could have worked for a few more years, however I decided to quit whilst I was still able to enjoy some of my retirement.

My advice regarding the future would be to take each day as it comes, it's really not the end of the world and a positive outlook does make life much more enjoyable. My PD still allows me to travel and although I can't take part in many sporting activities now I am able to lead a reasonably full life. You will learn to make adjustments to you lifestyle as things develop. it's important to know that PD is unique to each person and while one's condition may deteriorate quickly another may remain the same for many years.

I hope to chat to you both along the way, take care.

Glenchass

#7
Thankyou all for your kind words.
I would like to also join our local support group but my husband will not come along as he says he doesn't want to see others worse than himself has it will scare him.
I am on my third day now of him sleeping nearly all day and when awake only muttering a few words here and there.
Thank God in having you all here to talk to, I have five children whose ages range from 16 to 38 but it's very difficult to let off steam to them as they kinda think I am picking on their dad in any little moan I may make. help!!!:rolling_eyes:

#8
Hi parkwife, I am happy to have given you the courage to post on here. I too have been reading on here for a couple of years before taking the plunge.
You just get to feel so lonely I think, well that's my problem anyway. We are slowly but surely becoming a coupe of recluses as my hubby doesn't want to go anywhere or do anything unless it's under his terms or likes anyway.
It is our 40th wedding anniversary in June and last year booked a short Norwegian Fjord cruise to celebrate. However I had to go last week and cancel it as he said he can't face up to going now with all the people that will be on the ship. I could cry. X

#9
Hello Parkywife

Oh dear that sounds hard about the holiday. This sort of thing is not happening for me yet so I guess others will have better things to say. I do feel limited though as we now have my mother in law living with us and that was the first brake on my dreams as it is such a palaver to leave her and then only for a short time.

My way of dealing with it was to make sure I had something for me...I went to a book group and got a once a week job outside the house. For me just [u]deciding[/u] to do something usually helps. I also spend a lot of(too much) time on the computer.

I think it is important to be able to moan but it has to be the right people as you say. I use either people who don't know him or people who know him well enough to love him whatever I say..and yes, the kids don't really work for me either. This place would work for this I guess/hope.

#10
Hi parkwife and thankyou x

#11
Hi everyone,

I was dx at the end of 2008 after having not been well in one way or another since the end of 2006. Although basically it was a huge shock, I suppose parkinsons had crossed my mind. It was actually a relief to find out it wasn't something worse. I will be 60 this coming summer so at the time of dx I was 56. I've been married to my lovely husband for almost 39 years, we both retired early and we haven't got any kids. He's wonderful to me, as he always has been.

We used to have great holidays and have been to lots of far flung places and thank goodness that we have because it seems to have been impossible to arrange anything much lately. When I was first diagnosed and given tablets they had an immediate effect and made me feel so much better, then the effect started wearing off and I had to have a higher dose, so on and so on. The meds I'm on now still have a good effect and when they're working well I'm not too bad, but when they wear off, which they keep doing lately, I can barely move. It's somewhat unpredictable what will happen each day, so it's difficult to organise anything particularly a holiday and we could both so much do with a holiday. I get so frustrated that I can't always do the things I want to do, or if it's something I can do, it has to be at a time when I'm capable and not necessarily when I want it to be.

I worry that I'm spoiling things for my husband, he's such a lovely person, his patience and support is legendary, he really is the love of my life. I have bad nights and I worry that I must disturb him, but he always says that he doesn't hear me, except when I have vivid dreams and start shouting and screaming in my sleep (goodness knows what the neighbours think!)

Once or twice my meds have run out in the middle of the evening when we've been in a restaurant or wherever and my husband and friends/relations have had to help me out, (so embarrasing because onlookers must think I'm drunk which I'm not).

I'm sure the right dose of meds and the right routine for me are out there somewhere and hopefully we'll come across them one day soon. I've been going to a special parkinsons exercise class where we exercise to music, I've been really enjoying that. I've always loved music and I find that it helps me a lot.

I'm sure it will help us all to have each other to talk to. Anyway, it's good to know that there are people out there who understand, parkinsons is so difficult to explain to anyone.

Take care everyone, let's stay positive and hope for a good day tomorrow.

#12
Hello,

I've been diagnosed with PD last year and I am 46. I also have a loving husband and 2 beautiful kids at 6 and 9. Today is the first time I join the forum.

I strongly believe the real long-term effective medicine comes from myself. I, too, felt embarrassed when symptoms took over me outside the house. But I kept training myself to overcome this by going to high street Tesco on my own. Because after all, it's a sickness. There's no shame in it. If I am slow, I am slow. So what? But if I hide myself from doing all the fun things I used to do, I am in a way passing the depression to my family. My children are young. They like going out to fish-and-chips and have holidays. They are fully aware my hand shakes all the time. Maybe they also felt embarrassed which I must say if they did they hid it very well. But by not feeling embarrassed myself, I showed them how not to feel awkward themselves. In fact, last Sat. in a Cafe I told my daughter it was getting tricky for me to cut the bacon into pieces for her and she should try to do it herself. She said straight away she would try. I don't think she wanted me to stop going because I couldn't cut her bacon. And when we were leaving, I noticed other tables were watching us when I asked my son to help me get into my coat. I made my PD train my children to become better characters. So I am not losing much, am I!

I went on a holiday at Christmas. Although I was slow, I thoroughly enjoyed it, so did my companions. From that trip, I've learned something: HAPPINESS IS THE BEST DOPAMINE. I need to find happiness myself.

Please start having holidays. Choose the convenient ones like all-inclusive or cruise. Cherish every moment you have.:grin:

#13
well there been a few more new members joinin whilst i been in hospital,and alot to try and answer to,which atr the mo unfortunally i carnt type much,so i will just hi to all of you new members ,welcome you all to puk forum,its a good forum with good surport and nice freinds to make,im ali,im 42 years old and ive been dx for 11 years,it be lovley to see you all around the forum,and if u pop in to the cafe/diner in the socail i will make you a cuppa :wink:

#14
Hello Zorro, nice to meet you. Of course you are right, my husband tells me who cares what other people think, stop worrying! I do my absolute best to carry on as normal (shopping, general chores that sort of thing), I just carry my phone with me so that I can always contact my hubby If I ever need to. I do think that to a certain extent some of it is in the mind, if you think you're going to be allright you will be. I think it helps to let yourself be busy and distracted from it.

It's true what they say there are always people much worse off.

Have a good day:grin:

#15
Hi Zorro. I too have been dx just over a year. I have a lovely grandson aged 8 who understands as far as possible my condition. He is so helpful and seems to know what I need without being asked. He will instinctively open the car door and help me out of chairs.

I am sure you will find your own children grow into more compassionate and helpful adults because of your p/d.

#16
Hi everyone and a big welcome to all the new members. I agree with Zorro about pushing yourself! I am 52 and was dx 2 1/2 years ago, I have been on meds from the start. Some days i can feel so slow and stiff i daren`t drive let alone go into a shop or cafe! It took me 2 years to pluck up the courage to do a full supermarket shop and even then i ended up explaining why i needed help!My grown up children don`t notice my strange movement any more and they and their partners just automatically help with every day life!

I also agree about going on holidays, i do find the preparation puts me off and the travelling is realy hard what with medication etc. Planning and pre-booking seats is essential. Once away relaxation in a warm climate (and no one knowing you) really helps my pd.

I`m lucky my pd is under control (for now) but my attitude is - pd isn`t going to stop me enjoying life! I`ve spent too long worrying what people think, i have a long list of "to do`s" and i`m damn sure i`ll do them (in some way or another). I owe it to my lovely, caring, patient hubby to keep on trying to keep our dreams alive (god willing).


Fingers crossed

Big C
:wink:

#17
You lot are fantastic! Your husbands/ wives/ families are lucky to have you.

#18
Ali J, pleased to meet you lol. I am happy to hear you are out of hospital.
Parkywife