Frustration

[Drew Saunders]

I have been on this forum from the start and to my shame this is the first time I have really looked at the caregivers corner. I was diasgnosed with PD 8 years ago and after reading your comments I am lucky in that my main problem is tremors and lack of mobility. I get occasional anxiety/panic attacks. Depression is very common in PD sufferers and I think this is due to the fact that there is no cure so some patients cannot see any light at the end of their particular tunnel. There is medication that can help reduce to affects of PD but is very much a trial and error thing because we are all different and the best the medical fraternaty can do is second guess the best medication to ease the problems. One of the medications that I take is diazepam. It is an anti-depressant with a difference. It has 2 main areas of help. 1, it is a quick fix for anxiety/panic attacks and 2, is a muscle relexant. I know that this medication is helping Jim, Heather's husband. If we can help the physical side then the knock on affect could be to reduce the depression. Does this make any sense to you?
Most people concentrate on the patient which is all well and good but the carers should be considered equally as they have to watch there loved ones going through all sort of hoops and being frustrated that they cannot do more.
I take sinemet 62.5mg x 9 per day, azilect 1mg x 1 per day and diazepam when required up to 6 per day. I do not take antidepressants because they have an adverse effect on me and negate the sinemat. I must stress that above medication works for ME and would not necessarily suit everyone else. I was tried on agonists (cannot remember the name of the medication) but made things worse.
As you will have read in other parts of this forum humour is a fundemental requirement to living with PD. Encouraging people to laugh or smile is as good a medication as any pills. Sure it is not easy to gee up people with depression but if you can it is a neat trick.
Again this is difficult but try and give yourself a break and do something just for you as a carer. Do not feel guilty. You have to have that time to yourself otherwise you will wear yourself out. My wife goes out 1 night a week linedancing which gives her a chance to fully relax and enjoy herself and so she should. Elaine and I have a wonderful relationship and while my PD is not at a chronic stage I realise the need for ELaine to have that time to herself.
Sorry if I am rambling a bit but I am typing as I think of issues and may be bit disjointed but hopefully this monalogue has been of some help.

[Pauline]

Drew I think you have said it beautifully I think all care givers should be applauded they go through this as much as we do and it must be very frustrating to watch a loved one go through this and not much they can do but to be by our side and give us a hug every now and again just lets us know we are still loved :):):)Pauline

[heather]

Hi My 2 special friends
welcome to the carers corner, i don't think many get down to the bottom of any Forum, I have found that it's usaly the top 1/4 of any forum people go as far as.
being a carer for Jim for 12 years, I still say i no who's shoes i would rather be in , my size 6, yes it is hard watching/going through all the stages ,but with out being selfish, i'm the one on hear talking to my new friends, Jims' the one laying in bed, i'm the one who has the choice to go to work tomorrow, Jim would love that choice
I do agree that carers must have some time to themselves,and i try to get to bingo once a week with my special friend, but i also have time on hear which is just as relaxing, as going out
Drew , Jim has antidepressant's , one is for the hallucination,and they work well, the others he was given, and the psychiatrist, told us he didn't think they would be much use, as most antidepressant's don't work on neurological illnesses,

Thank you for visiting, next time we will put the kettle on

[Gail]

This is a hard section for me because it brings to reality what my children will have to go through someday when they have to care for me. I have wonderful children and I hate the thought that someday I will be a burden to them. They don't feel that way, but do.

[Drew Saunders]

Gail,
I don't know what to say - unusal for me!
I had to give myself some time to think about this.
Elaine, my wife, knows that I will at some point get worse and will need to give me more care that I currently require. Her outlook is that no matter how black the future looks we will still have each other. I am sure I will feel guilty but that will not stop her loving me. We agree that if she cannot cope then we will make arrangements for me to have external help to give me the best quality of life that I can have but she will still be there beside me because she wants to be there. You cannot stop someone loving you in this situation - they will suss you out if you try. Caring is voluntary and without condition like love.

Anyway all this is a long way off so enjoy each day and the company and love of your children. Welcome each day with open arms the way you do your children and ENJOY.
THE FUTURE IS TOO FAR AWAY

[Gail]

Gail,
I don't know what to say - unusal for me!
I had to give myself some time to think about this.
Elaine, my wife, knows that I will at some point get worse and will need to give me more care that I currently require. Her outlook is that no matter how black the future looks we will still have each other. I am sure I will feel guilty but that will not stop her loving me. We agree that if she cannot cope then we will make arrangements for me to have external help to give me the best quality of life that I can have but she will still be there beside me because she wants to be there. You cannot stop someone loving you in this situation - they will suss you out if you try. Caring is voluntary and without condition like love.

Anyway all this is a long way off so enjoy each day and the company and love of your children. Welcome each day with open arms the way you do your children and ENJOY.
THE FUTURE IS TOO FAR AWAY I like THE FUTURE IS TOO FAR AWAY. For the most part, I live do live by that. I am always saying that I will not let my tomorrow ruin my today. Every once in a while I just need to be reminded. I am lucky and have great children and just worry about how my future will affect them. Thanks for the pep talk.

[Drew Saunders]

We all need reminding from time to time about what is important and I am no different - I often need a smack round the head to bring me back to earth. If we were not human and if we did not care it wouldn't matter but here's the rub - we are and we do care. I'm sure this forum isn't unique but being able to "bounce" off one another sometimes in a light hearted way and at other times in a more serious mode makes this site increasingly vibrant and gives us all a lift. Long may it continue and 3 cheers for Lianna Marie.
It's now 2.20am UK time so up the "wooden hill" for me,
Be as well as you can Gail
God Bless

[suzie Q]

I also wonder who is going to take care of me if i get so i cant do normal things and look aftermyself.At the moment i work 3to4 days a week some days find it hard but i love my job .Reading how you all care for your loved ones with this disease makes me think will my family be like that .at the moment i find it hard to ask for help ,nobody does your housework like yourself .i am sure that they will all be there for me if and when i need them .i have a lovely family and maybe it will not even happen

sue

[Drew Saunders]

Suzie Q,
The one thing that I have taught myself for very good reason is not think too far ahead. It is a neat trick which requires practice like wearing sunglasses in a dark room - you cannot see much ahead. I'm sure you have read this elsewhere on this forum but - live for today, worry about the future when and if it happens but until then enjoy what you have now. Worrying about the future will only accelarate the down turn of PD because of the stress that you inflict on yourself. See the funy side of any given situation and have a good laugh - often. I'm falling asleep at the wheel now so must go. Hope this helps,
God Bless

[Peggy T.]

My husband and I have been married less than 7 years, having spent over 20 years finding our ways back to each other since college. I was vibrant, strong, and active when we married. Now I'm slow, misshapen, and often depressed. Since he retired 3 years ago, my husband has cared for his parents until their deaths, and now he has me. He does everything, and I feel so useless and guilty. He's running himself ragged, and I can't make him stop. I wish he'd just sit with me and hold my hand. I need HIM, not what he does, but I can't seem ungrateful.

[MargieA]

I also wonder who is going to take care of me if i get so i cant do normal things and look aftermyself.At the moment i work 3to4 days a week some days find it hard but i love my job .Reading how you all care for your loved ones with this disease makes me think will my family be like that .at the moment i find it hard to ask for help ,nobody does your housework like yourself .i am sure that they will all be there for me if and when i need them .i have a lovely family and maybe it will not even happen

sue


Hi Sue,

http://i302.photobucket.com/albums/nn88/Bronx628Margie/smileyhappyday.gif

Hang on to that last thought you put down"maybe it will not even happen"...that might be truer than you can realize. Whoever thought that man would fly? Now there are airplanes everywhere. Case in point...just like we have airplanes now...in the maybe very near future we will have the cure for PD.

Having a lovely family is one of the strongest bonds us humans can have. That alone is a big punch in the stomach of PD. You being positive is another punch. You keep on 'punching' that PD until the cure is found and it will be found. We are all with you...and in unity there is strength.

God bless you Sue.

Margie

[suzie Q]

thanks so much Margie i am so glad that we have this forum and able to talk to each other


hope you are well
sue

[grldnklly]

Hi All,
I want in in this discussion too. I would like to give you my perspective as a carer. I have been my father's carer for the last seven years and I hope and pray to God that I have a lot more years left. This is not because I am a sad individual who doesn't have a life outside of caring for my father. I have a very busy life full of lots of lovely people (not least my new friends on the forum). I work full time as projects director for an overseas aid organisation. A job which I love and which entails me working in Romania for about 9/10 weeks in the year (my brother and his wife take over then). I also work part-time as a trainer and assesor for youth workers. I did do some lecturing but gave that and a few other things up to spend more time with my father.
I look after my father, not for money (thank God I don't need it), not out of duty nor out of pity but because I want to. I am the one in control. I can just walk away any time I want. At present my father needs a lot of care. Before going to work in the morning I shower, shave, dress him and then we both take the dog for a walk. The rest of the day my father sits in the chair sleeping and reading. I do all the house work, shopping, cleaning, cooking, gardening etc. as my father is unable to do it. I take him to all his appointments (doctors, hospitals, podiatry, speech therapy etc) I am happy to do this and more as long as I can keep my father at home and more importantly help him keep his dignity. Yes, I know I am entitled to help, but whilst we can manage on our own, we will. When things get too much then we will get someone else in. Until that time my father and I have agreed to manage on our own.
As you will notice I have said that at present my father requires a lot of care. That's because I agree with what Margie says, that is that we don't know what the future holds. There could be a cure for parkinsons just around the corner. Not only that, my father is waiting to go into hospital to have his medication changed and I believe that this could improve his life immensely. What if he doesn't improve, what if he gets worse , what if ...............? Well, we will face that when we come to it. As far as it is humanly possible I will look after him. Because someone has parkinsons doesn't make them any less of a person. Actually, the fact that my father has parkinsons has allowed me to get to know him more. We spend more time together and get more opportunities to discuss things.
I knew my father before he had parkinsons. He is still the same man who made all the sacrifices for my brothers and me. He is still the good husband and good father. He is still the same man who helped to shape me and make me what I am (and I am not that bad) and gave me an excellent start in life. I care for my father because I love him and no matter what mr parkinsons does, he is not going to change that.
I also agree with Heather. I know which role I would choose if I were given a choice. It is a privelege to be a carer.
I know this is erratic and all over the place, but I hope you can understand what I am trying to say.
God bless
Geraldine

[suzie Q]

that was lovely Geraldine.your right we dont know what is down the track, but if we dwell on it and let it take over our lives mr parkinson has won I am sure my family will be thjere for me whatever thank you for your thouights

Sue

[heather]

Hi all my friends
Geraldine reading your post, is like looking in the mirror
I First went out with Jim 3 months after my 17 th Birthday, i will be 60 in August,so i think it's love and sweet memories that keeps us going.
It is easier for me to explain Jim, that the only thing he can do for himself is Breathe, and scratch his nose :), he understands every single thing,Geraldine like you i have to fully run the house in side and out side,but at least i have the last say :D[don't women always have the last say ;)]
Being a community nurse for 28 years last 2 part time then reduced to 3 days a week, I no what help is available, and how to obtain it, but at this moment in time, i want to do all the caring he needs, I say this moment, because, who knows what the
And i would not change one day of our life for anything, not even the lottery, and that is the honest truth.

Peggy our new friend [i need to explain Jim my husband hasn't got PD only a illness that mimics it, so i only talk as a carer]
Your husband is a knight in shining armer,let him keep that armer on, he has been through a lot bless him , he will take it off in time
Jim was never still, did all out side the house,and fixed every ones cars. painted the inside, fixed everything in doors, built our kitchen etc etc The Garden was his pride and joy , now i find it just if not more important to keep his Garden up to a standerd I think he would proud of, your hubby is trying to do the same with your home
Jim has his hospital bed down stairs, Every night about 1 hour before i go to bed, i lower the bed, and get into bed with him,this is our time for cuddles, i have often woke up 3-4 hours later as stiff as a board, climb back out of his bed, and go up to mine, and i will never stop doing that, on a weekend, when all is done i pop on the bed with a coffee and we watch the Tv together.
What i'm trying to say is, if he was a burden, no way would i be hanging around,
So all my Friends i'm sure your loved ones will do what ever you want/need, when or if the times come,
You lot grow on us, :D , yes we have our moments, when we want to scream, but it's not at you it's your PD,
We do make plans, even sometimes when we make them we wonder if they will happen, but if we don't try, illness has won
before we have tried
The only thing i ask of you ,is to try and listen to your carers
we only ask you to use that stick, chair whatever, take your medication ,to help you and us. not doing these will NOT win PD, it will do the opposite , you will fall more, be it due to medication or a simple thing like a stick , When you don't do it , it stresses us out, we no stress is no good to PD, so we hide it from you, and it makes us feel lonely, sad and depressed.
hope i haven't gone on to much, but just need to let you all no we do love our families and want to no that if you want anything you will ask, we are most things, but not mind readers
http://i10.photobucket.com/albums/a126/maesisaf/ifthispostcauses.gif:D
Drew
http://i10.photobucket.com/albums/a126/maesisaf/sayings5.gif:p

[Gail]

Geraldine and Heather thanks for sharing your experiences. None of us know what the future holds for us, but I do know that I have a wonderful, supportive family that will always be there. Reading your stories eally helped ease my mind. Gail

[Pauline]

my Hubby John treats me different since he found out I have PD< he won't argue with me he just give into me , he is such a good man I know he is only trying to help
But I don't want to be treated different I just want to be treated like a human being and if he is frustrated then just put his arm around me and give me a hug when he does hug me it is the best medicine there is :):):)Pauline

[Gail]

Pauline, My best friend is that way, well not the hugging. But she treats me differently too. She wants to help me do everything. We have had several discussions on PD is something I have, not who I am and she can't make it go away. We have been best friends for 22 years and sometimes I thnk this is harder on her than it is on me.

[grldnklly]

Hi All,
Isn't it great to have somewhere were we (both sufferers and carers) can say what we are really thinking. Somewhere were everyone understands where we are coming from and so we don't have to keep explaining ourselves or make excuses for what we say or do.
I am so glad that everyone is so open and honest. That's what makes this forum special.
The forum gives us all a great opportunity to get an overall picture of what parkinsons is and what it isn't. It also gives us somewhere to vent our worries and fears, and most importantly to share the good things of which there are plenty!
God bless
Geraldine

[Drew Saunders]

Hello everyone
Well, what an interesting read. Where else would you get such information? I have decided to make myself a life member. This forum is so good. Three cheers for Lianna and everyone who contributes. I have learnt so much on this site and more importantly made new friends who you don't have to try and explain things to because they already know.
I hope you all have the best day that you can.

[Gail]

This has been an interesting read and very helpful to me. It is comforting when you express your feelings to both have them validated and have someone make you stop and re-evaluate your outlook.

[heather]

my Hubby John treats me different since he found out I have PD< he won't argue with me he just give into me , he is such a good man I know he is only trying to help
But I don't want to be treated different I just want to be treated like a human being and if he is frustrated then just put his arm around me and give me a hug when he does hug me it is the best medicine there is :):):)Pauline

Hi Pauline
One of the first things i told Jim was that if he wanted poor Jimmy, he could go and live with mum, as she is all poor Jimmy. his face washttp://i10.photobucket.com/albums/a126/maesisaf/motocanaglia_sbiancato.gif
As i'm no good trying to walk on egg shells, If i had listened to everyone he would have been tube feed and hoisted, about 2 years before his time, i told him he could Transfer, eat and drink, and that's what he was going to do,and did, people where coming and giving him all these ideas, and you could see him thinking , that would save him a lot , so in the end i told them not always politely to get lost, and i would say when theses things would happen
We argue just like we always have, only difference i get the last word :D , but Jim just turns his head away and closes his eyes,which he knows winds me up, as he would always walk out on a argument, and it annoyed me more
We never went to bed our out to work with out a kiss, we may not have been speaking, and now i never go up to bed without a kiss [ he does turn his head away to tease me monkey] and our hug time,
But then my daughter does call me the wicked witch of the north:D

[heather]

Geraldine and Heather thanks for sharing your experiences. None of us know what the future holds for us, but I do know that I have a wonderful, supportive family that will always be there. Reading your stories eally helped ease my mind. Gail
Hi Gail
like you said , no one knows what the future hold, and by trying to keep a normal as possible home, if anything happened to, any of you, the other has a better chance of surviving, and would normally need support and love any way. we both no that if something happened to me, then yes Jim would have to go in care, not because no want wants to look after him, but because, they would not have the experience to give him the care that he needs, and has a deserves, so we as a family are once more organised, and put on top self for dust to collect.

[heather]

Hi All,
Isn't it great to have somewhere were we (both sufferers and carers) can say what we are really thinking. Somewhere were everyone understands where we are coming from and so we don't have to keep explaining ourselves or make excuses for what we say or do.
I am so glad that everyone is so open and honest. That's what makes this forum special.
The forum gives us all a great opportunity to get an overall picture of what parkinsons is and what it isn't. It also gives us somewhere to vent our worries and fears, and most importantly to share the good things of which there are plenty!
God bless
Geraldine

Hi Geraldine
that what i think makes the forum, and so many people come on
there is always something interesting going on, and like you said "everyone is honest and open," but in a nice way . no one is nasty, and if they disagree it's always said in a nice way, and no one takes offence, so we really are family, it may not be blood, but more special Friendship [hope that makes sense]
Take care

[susan wheatley]

hi everyone,

it was interesting to see things from both sides, my family treat me differently since i was diagnosed if i am trying to do something like opening a packet of something one of them will say here give it to me i feel like a child with them sometimes, i wish they could step into my shoes for just a day and see exactly what its like to have pd then maybe they would understand better, as a member of the pd society i recieved an invitation to attend an event at liverpool where there will be a talk by a consultant neurologist about pd and what the future holds i wish they would all come with me then maybe they treat me different and have a better understanding of what pd is, my husband knows that he will have to do more and more for me as the disease progresses he does try his best lets just hope things dont come to that for a long time, well here,s hoping.

[suzie Q]

Sometimes i get frustrated with my girls because they never mention the word parkinson disease ....they really dont know how to handle the situation
(they are better than they used to be because they talked to someone from our local parkinson group .the last time i attended the clinic)

i go for 2 weeks at a time it involves travelling by plane to Melbourne Australia.I usually do this once a year.but i have been good so far and have not needed to go .I am so glad about that because it is so far away i am over there on my own for the 2 weeks I dont have any visitors because i have no family there so it seems like i am there forever .Ken takes me over then comes back to travel back with me .

the last time i was there i had to come home earley because my dad got sick.Lucky i came home because i got to say goodbye to him he died .it was such a shock because he was well when i went away ..

the girls after talking to the person at the parkinson group are much better and said they were sorry they did not understand a bout parkinson and the side effects of the medication .I had lots of issues eg the gambling behaviour i talked about before .So i guesss it has been hard for them ...any enough they are great now except they dont mention it much .and i suppose that it is there way of coping with it all


Sue

[susan wheatley]

you probaly right every body has there own way of dealing with things, sorry to hear about you dad its always a shock to loose some one close but times a great healer so they say take care.

[heather]

hi everyone,

it was interesting to see things from both sides, my family treat me differently since i was diagnosed if i am trying to do something like opening a packet of something one of them will say here give it to me i feel like a child with them sometimes, i wish they could step into my shoes for just a day and see exactly what its like to have pd then maybe they would understand better, as a member of the pd society i recieved an invitation to attend an event at liverpool where there will be a talk by a consultant neurologist about pd and what the future holds i wish they would all come with me then maybe they treat me different and have a better understanding of what pd is, my husband knows that he will have to do more and more for me as the disease progresses he does try his best lets just hope things dont come to that for a long time, well here,s hoping.

Hi Susan
that sounds like a great event
I no what you mean by stepping in your shoes, that's why i keep saying i would rather be in mine as a carer than yours

Have you told your family, that if they take away your independences, then PD will take over very quickly
Tell them if you don't use it , you will lose it ,then you will become more dependent on people. and that's not just for PD
I have seen a lot of elderly been smoothed by their family, then they can't look after themselves.it is so sad

i made Jim do things, thought it was difficult for him, [cruel to be kind] and still do one example is, they have told me about 2 years ago he should not be eating , in case he chokes and aspirates, well he still has his tablets in cereal for breakfast, liquidised fruit lunch time, small custard with tablets, and pot supplement and tablets for bed, his tea and coffee is thickened,so if i listened to them , he would not be swallowing anything now,He was told what could happen, and he made the decision to eat, and because i have power of attorney i can still carry out his wishes, as they could say because he can't talk that i had to stop it
good luck my friend ,please will you give us some feed back on your event

[heather]

Sometimes i get frustrated with my girls because they never mention the word parkinson disease ....they really dont know how to handle the situation
(they are better than they used to be because they talked to someone from our local parkinson group .the last time i attended the clinic)

i go for 2 weeks at a time it involves travelling by plane to Melbourne Australia.I usually do this once a year.but i have been good so far and have not needed to go .I am so glad about that because it is so far away i am over there on my own for the 2 weeks I dont have any visitors because i have no family there so it seems like i am there forever .Ken takes me over then comes back to travel back with me .

the last time i was there i had to come home earley because my dad got sick.Lucky i came home because i got to say goodbye to him he died .it was such a shock because he was well when i went away ..

the girls after talking to the person at the parkinson group are much better and said they were sorry they did not understand a bout parkinson and the side effects of the medication .I had lots of issues eg the gambling behaviour i talked about before .So i guess it has been hard for them ...any enough they are great now except they dont mention it much .and i suppose that it is there way of coping with it all


Sue

Hi Sue
so sorry to hear about your dad, but so glad you got to say your good byes, he will be looking down on you, and helping you , I often talk to my dad for guidance,i no i get my strength from him,I was the only one with him when he dropped dead, and we where very close, he was very strong willed, deter mend, and call a spade a spade but give any one his last
Though Jim hasn't got PD [his illness mimics it] my children didn't talk about it, i don't think they realised at first, I would say things, and they wouldn't reply, but i ignored it, and continued to tell them day to day things, My daughter was the first one to start to acknowledge, something was wrong, and soon after my son, now they don't make a big fuss, but no what's going on.

[suzie Q]

Thats what my girls are like now .It does not mean that they dont care ,because one of my daughters told my mum that she cant even think about it she tries not too ,that is there way of coping

Sue

[heather]

Very true Sue
we all have our coping mechanism,mine is talking about what's going on ,but at first it was keeping it all bottled up
I believe as long as the children no what's going on, and what is happening to there Father, then they are prepared, and if coping is, not talking,then that's fine, but they no they can talk or ask any questions if they need to.

[MargieA]

Hi Geraldine
that what i think makes the forum, and so many people come on
there is always something interesting going on, and like you said "everyone is honest and open," but in a nice way . no one is nasty, and if they disagree it's always said in a nice way, and no one takes offence, so we really are family, it may not be blood, but more special Friendship [hope that makes sense]
Take care

A GREAT DEAL OF SENSE! I couldn't have said it any better.
Margie

[susan wheatley]

hi heather,

good advise now i have just got to get over to my family, its difficult sometimes as they think they are helping me and i dont want to upset them but i,ll find a way thanks susan.

[Elaine May]

I complain to Drew when he has done some ironing while I have been at work in the mornings. I don't want him to get too tired and have a few bad days after. I have had to accept that Drew gets a lot of pleasure from doing some chores as he says he makes him feel as he is contributing. As long as he doesn't get too tired then I am going to have to accept that as long as he can do things he will. I am looking forward to January 2009 as we can then do the chores together!:cool:
Oh and by the way the carers forum is at the bottom as it is the carers who support everything and everyone!:D

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomegdn7-vicopybmpmrsdrew.jpg

Hello,sorry not been on before to welcome you
I have turned into a man, I have the flu and feel very sorry for myself:p

It is difficult you want to protect/help/love them,but you do have to let them prove to themselves, they can't always do what,they
could do. they will learn you just have to trust them.

There is a old saying "If you don't use it, you lose it"
We soon found that out,It seems it a thing with all neurological illnesses.
Are you looking to 2009, for a reason, you may have posted it
as this is only the second posting i have done today :eek: ;)

[Drew Saunders]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomegdn7-vicopybmpmrsdrew.jpg

Hello,sorry not been on before to welcome you
I have turned into a man, I have the flu and feel very sorry for myself:p

It is difficult you want to protect/help/love them,but you do have to let them prove to themselves, they can't always do what,they
could do. they will learn you just have to trust them.

There is a old saying "If you don't use it, you lose it"
We soon found that out,It seems it a thing with all neurological illnesses.
Are you looking to 2009, for a reason, you may have posted it
as this is only the second posting i have done today :eek: ;)

Eh? It cannot be man flu you have 'cos that is really serious. Flu and man flu is like comparing chocolate to real ale - no comparison! You know me Heather - only joking except the bit about man flu - that is super serious (HA HA). Elaine is retiring end of January 2009 and then we can spend all of our time together - you know - watching me ironing! Too much (I've started giggling now must have been the chocolate) - oops! I know you sent this to Elaine but could not help myself reply as Elaine is zedding having had a busy day.
Love to you and Jim

[MargieA]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomegdn7-vicopybmpmrsdrew.jpg

Hello,sorry not been on before to welcome you
I have turned into a man, I have the flu and feel very sorry for myself:p

It is difficult you want to protect/help/love them,but you do have to let them prove to themselves, they can't always do what,they
could do. they will learn you just have to trust them.

There is a old saying "If you don't use it, you lose it"
We soon found that out,It seems it a thing with all neurological illnesses.
Are you looking to 2009, for a reason, you may have posted it
as this is only the second posting i have done today :eek: ;)


Heather, I just read the above and learned you were sick. Please take care of yourself and get well fast. Drink plenty of fluids...some hot tea...and try to get some rest. WE'VE MISSED YOU! Love, Margie

[suzie Q]

same here heather look after yourself .Hope u feeling better

Sue

[ltd-addition]

Oh Elaine here's Heather & I thinking Nurses are the worse patients !! I'll have to get the fire brigade & ambulance , Doctor , Nurses and strip agram to come to your aid. Or we could just get Drew in his kilt to dance the Highland Fling !!

I KNEW YOU'd smile !!!!!!!!!!!!!!!!!!
Get well soon angel

[Elaine May]

Oh Elaine here's Heather & I thinking Nurses are the worse patients !! I'll have to get the fire brigade & ambulance , Doctor , Nurses and strip agram to come to your aid. Or we could just get Drew in his kilt to dance the Highland Fling !!

I KNEW YOU'd smile !!!!!!!!!!!!!!!!!!
Get well soon angel

Drew never goes commando so don't you get any naughty thoughts about looking up his kilt!
I've not been too well today but I hope to feel better tomorrow. I think it was the beefburgers at last night's BBQ.

[Elaine May]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomegdn7-vicopybmpmrsdrew.jpg

Hello,sorry not been on before to welcome you
I have turned into a man, I have the flu and feel very sorry for myself:p

It is difficult you want to protect/help/love them,but you do have to let them prove to themselves, they can't always do what,they
could do. they will learn you just have to trust them.

There is a old saying "If you don't use it, you lose it"
We soon found that out,It seems it a thing with all neurological illnesses.
Are you looking to 2009, for a reason, you may have posted it
as this is only the second posting i have done today :eek: ;)

I am retiring as I am 60 in January so I can't wait to have more freedom to spend lots of time with Drew - and be a lady of leisure!

Hope you are feeling better.

[heather]

Hi All
Hope you are feeling better Elaine
Thank you all for your kind messages
I was feeling better till i read Dr Drews report
that is really serious.
So i think i will have to have some time off work http://i10.photobucket.com/albums/a126/maesisaf/mixedlaugh24.gif
My dear friend Drew, i/we all no you are joking, so you don't have to keep reminding us :D, no answering back now, we love your joking, and battering, it's all great fun.
http://i10.photobucket.com/albums/a126/maesisaf/imright.gifhttp://i10.photobucket.com/albums/a126/maesisaf/men49-1.gif
Elaine i'm 60 this year, so your husband is quiet safe, as i'm now at the age to be looking for a toy boy
http://i10.photobucket.com/albums/a126/maesisaf/dancem.gif
I have got one of these
http://i10.photobucket.com/albums/a126/maesisaf/01238-2.gif

[Shirley]

Suzie Q,
The one thing that I have taught myself for very good reason is not think too far ahead. It is a neat trick which requires practice like wearing sunglasses in a dark room - you cannot see much ahead. I'm sure you have read this elsewhere on this forum but - live for today, worry about the future when and if it happens but until then enjoy what you have now. Worrying about the future will only accelarate the down turn of PD because of the stress that you inflict on yourself. See the funy side of any given situation and have a good laugh - often. I'm falling asleep at the wheel now so must go. Hope this helps,
God Bless

I am not sure if this is how you reply. Drew, I read all the entries and found yours to be closest to my thoughts. My husband Richard has been diagnosed 5 years with Parkinson's and is still fairly well functioning. Our biggest issue currently is his "futurizing" most things, and getting all buggered up. He basically "doesn't feel well" often, then doesn't want to plan things or go many places far from home. I feel like I am still young (60) and want him to participate more and try to move above and beyond his "discomfort". I've seen most times he does, it has been a good outcome. I feel like the best we'll have is always now. I appreciate your thoughts about not thinking too far into the future, I have found he gets even more depressed. Reading Lianne's book has been having that effect on him also, he sees the half empty glass instead of half full. But, god, is he a wonderful man and husband, I often feel sad myself to see the man as I once knew vibrant, alert, articulate, is now deteriorating before my eyes. Shirley

[Drew Saunders]

I am not sure if this is how you reply. Drew, I read all the entries and found yours to be closest to my thoughts. My husband Richard has been diagnosed 5 years with Parkinson's and is still fairly well functioning. Our biggest issue currently is his "futurizing" most things, and getting all buggered up. He basically "doesn't feel well" often, then doesn't want to plan things or go many places far from home. I feel like I am still young (60) and want him to participate more and try to move above and beyond his "discomfort". I've seen most times he does, it has been a good outcome. I feel like the best we'll have is always now. I appreciate your thoughts about not thinking too far into the future, I have found he gets even more depressed. Reading Lianne's book has been having that effect on him also, he sees the half empty glass instead of half full. But, god, is he a wonderful man and husband, I often feel sad myself to see the man as I once knew vibrant, alert, articulate, is now deteriorating before my eyes. Shirley
Hi Shirley, I'm no docotor but I think Richard is depressed. Does he take anti-depressants? Please speak to your doctor. Got any friends that make you laugh? Go see them or even better have them come to see you both, Drew

[ltd-addition]

Ah After reading all of this I have to admit I cried

I'm not feeling sorry for myself, nor am I feeling sorry for anyone else, I cried because of the strength I felt and its effects on me
1. Dignity
2. Strenghth
3. Honesty
4. Love
5. Trust
6. Friendship
7. Determination
8. Empathy
9. Family
10.Laughter

This is what I feel, upon having read all of this today 31/08/08

I'm honoured to be a member of this forum and although I have not contributed much lately, it is not because I lost faith or hope , it is due to fighting a battle for me to be kept on at work.

I thought I'd won through a case conference to have me retained not retired. I would not believe anything until I have it in writing. But as is the case, I do not believe that even after the minutes of the meeting were published that I still did not have what was discussed in writing.
It took my union solicitor to re write and include the MAIN reason we were there and todate I am still waiting for the revised Minutes to be published.

I have been selfish in a sence because I have not kept my Family both on the forum or by blood informed of my difficulties, but that is my way.

I Apologies for not being there for you guy's but I know you understand that I had to focus

I should have rang or replied to emails from the gang who I think of as my true Friends on the forum but I know I will be "Told off" for writing this because "You Understand"

However I'd just like to say "Thank you " for being there for me

I do struggle with typing and once I've saved up to buy "Dragon speak type for my computer " I will contribute more. Until then "Keep strong whilst smiling" !

My admiration is for all of you on this forum

[suzie Q]

Ltd Edition


you made me cry with your words .i hope all goes well with you i have been wondering how you were going with your work sitiuation..as if you do not have enough to cope with keep strong and know that we are all thinking of you

your friend from Tasmania

sue

[Gail]

Hi Ltd,

Somehow I doubt that you have a selfish bone in your body. Your fight has not just been your own, but all of ours.
I am sure it must be exhausting for you both mentally and physically. Many thanks to you! Gail

[Drew Saunders]

Ah After reading all of this I have to admit I cried

I'm not feeling sorry for myself, nor am I feeling sorry for anyone else, I cried because of the strength I felt and its effects on me
1. Dignity
2. Strenghth
3. Honesty
4. Love
5. Trust
6. Friendship
7. Determination
8. Empathy
9. Family
10.Laughter

This is what I feel, upon having read all of this today 31/08/08

I'm honoured to be a member of this forum and although I have not contributed much lately, it is not because I lost faith or hope , it is due to fighting a battle for me to be kept on at work.

I thought I'd won through a case conference to have me retained not retired. I would not believe anything until I have it in writing. But as is the case, I do not believe that even after the minutes of the meeting were published that I still did not have what was discussed in writing.
It took my union solicitor to re write and include the MAIN reason we were there and todate I am still waiting for the revised Minutes to be published.

I have been selfish in a sence because I have not kept my Family both on the forum or by blood informed of my difficulties, but that is my way.

I Apologies for not being there for you guy's but I know you understand that I had to focus

I should have rang or replied to emails from the gang who I think of as my true Friends on the forum but I know I will be "Told off" for writing this because "You Understand"

However I'd just like to say "Thank you " for being there for me

I do struggle with typing and once I've saved up to buy "Dragon speak type for my computer " I will contribute more. Until then "Keep strong whilst smiling" !

My admiration is for all of you on this forum

Hi ltd-addittion,
You have hit the spot - again.
You are a very remarkable person. I know - I've met you!
Thank you for your reply to frustrations. It brings everything back into perfect focus. I know the hoops that your employers have put you through uncessessarily while just trying to do your job which you love to the best of your obility. What is it a about able-bodied people that they feel inadequate when they come across someone who has a disablement? They talk above you, they talk to who you are with but they ignonre you like you do do exist - like your incabable of putting one word in front of the other and coming up with a sentance that makes sense. Well nuts, next time that happens say " Hey, I'm here - just ask me"."Being in a wheelchair does not make me an idiot. You got a question? Just ask the vegatable (as you see me, question directly). You may be surprised by my response!"
To lighten the subject most poeple who see you in a whelchair and caring and polite but still seem uncomfortable about talking to you as a "normal" human being WHICH I AM. We are off to Malta mid week for 7 days. Will report back on attitiudes of people, Should be enlightnening

[mwright305@comcast.net]

Hi All,
I am frustrated because I cannot fiqure out how to start a new thread! (I need threads for dummies). Drew, your "monolouge" is beautiful, and very inspiring.
I have a question that I hope someone can answer for me, or point me in the right direction. My husband (diagnosed 2.5 years ago) is having shoulder surgery next week. I have read in the past, and for the life of me cannot remember where, that a "Parky" has to be very careful about what types of anesthesia he has. My husband had a hernia repair 5 years ago, and in hindsight, he has never been the same since. I believe he already had Parkinsons and that just excaberated the symptoms (even though he was formally diagnosed only two years ago.) Any one have any information? Thank you all so much for this forum.
Mary

[Drew Saunders]

Hi ltd-addittion,
You have hit the spot - again.
You are a very remarkable person. I know - I've met you!
Thank you for your reply to frustrations. It brings everything back into perfect focus. I know the hoops that your employers have put you through uncessessarily while just trying to do your job which you love to the best of your obility. What is it a about able-bodied people that they feel inadequate when they come across someone who has a disablement? They talk above you, they talk to who you are with but they ignonre you like you do do exist - like your incabable of putting one word in front of the other and coming up with a sentance that makes sense. Well nuts, next time that happens say " Hey, I'm here - just ask me"."Being in a wheelchair does not make me an idiot. You got a question? Just ask the vegatable (as you see me, question directly). You may be surprised by my response!"
To lighten the subject most poeple who see you in a whelchair and caring and polite but still seem uncomfortable about talking to you as a "normal" human being WHICH I AM. We are off to Malta mid week for 7 days. Will report back on attitiudes of people, Should be enlightnening

Now back in UK after a week in Malta complete with my chariot (battery powered disability scooter). What a response - clearly Maltese people have a totally different attitude to disabled people. They opened doors, parted the way on the streets to make way for me and spoke to me as a person rather than treating my as a cauiflower. People in UK could learn a lot from the Maltese people. I rest my case