Hello,
I am feeling very isolated,although I am in contact with people all the time.
I lost my wonderful husband suddenly last year.He was my dearest friend,and the only person who would discuss my illness with me.
My children are very kind but don't wish to hear of my symptoms,or fears.
And I am being bullied at work.by people who seem to think,I can switch off my symtoms at will. One said stop the shaking.and answer the phone,or go home!
Some of my close friends have drifted away,and the others don't feel comfortable coping with my illness together with the unexpected loss of my husband.
No one seems to want to know how I am really feeling.
I am offen in lots of pain,and am so heartbroken that I have no one to cuddle and comfort me.
Has any one felt like I do
Dear pmc,
Welcome to PD UK forum
You have come to a good place for support and although I can't be of much direct help I'm sure others will soon be replying to you. Also please ring the helpline above left - they can help in all sorts of ways both medical, workplace etc etc. I have been divorced for many years and although my sons were very supportive and said all the right things when I was dx I find that if I refer to my illness now , they really don't know what to say for the best so they say nothing. As for your workplace, I don't know how big an outfit it is but is there not a Human Resources person you can talk to because I would describe such remarks as bullying especially to someone so recently bereaved. It is beyond me why some people find it so difficult to understand PD perhaps others can enlighten us. If you look back in the employment thread at the Forum Home page you will find there has been a lot posted on workplace reactions and People with Parkinsons rights to consideration.
PD UK have Welfare officers in many areas who could help you but do phone the helpline above left.
Best wishes
Welcome to PD UK forum
You have come to a good place for support and although I can't be of much direct help I'm sure others will soon be replying to you. Also please ring the helpline above left - they can help in all sorts of ways both medical, workplace etc etc. I have been divorced for many years and although my sons were very supportive and said all the right things when I was dx I find that if I refer to my illness now , they really don't know what to say for the best so they say nothing. As for your workplace, I don't know how big an outfit it is but is there not a Human Resources person you can talk to because I would describe such remarks as bullying especially to someone so recently bereaved. It is beyond me why some people find it so difficult to understand PD perhaps others can enlighten us. If you look back in the employment thread at the Forum Home page you will find there has been a lot posted on workplace reactions and People with Parkinsons rights to consideration.
PD UK have Welfare officers in many areas who could help you but do phone the helpline above left.
Best wishes
i am sorry to hear you lost your husband, I am sure he would have been a big help. but as far as having a good moan, this is the spot. there are people here who have been through everything. however, i must say i have rarely heard of such awful work 'mates'.
Hi pmc i feel so sad for you after reading your post.I know how much i rely on my husband, like you he is my everything and i don't know what i would do without him. I just wish i could give you a big hug and be there to listen and talk to. You are so brave and i admire your determination to carry on working but you shouldn't have to accept the bullying, i don't know about employment law but you must report it!
Please don't feel alone, here on the forum you will find lots of friends and plenty of help whatever time day/night.
Keep in touch
big hugs
Big C
Please don't feel alone, here on the forum you will find lots of friends and plenty of help whatever time day/night.
Keep in touch
big hugs
Big C
ps 'moan' may not be the right term! sorry if it offended
Hello pmc
A very moving story and my heart goes out to you. Please keep posting and don't be alone as there are plenty of lovely people on this forum who can give excellent advice and support to you. Even a Social club to play games and have a chat to get things off your chest.
PD is cruel and can isolate us from activities that once where normal everyday tasks. I live on my own and yes, I dread the time when I can no longer look after myself, so try hard to keep going.
So keep posting on the forum and if you want to have a moan about things go ahead, we understnd.
Chin up love PB x
A very moving story and my heart goes out to you. Please keep posting and don't be alone as there are plenty of lovely people on this forum who can give excellent advice and support to you. Even a Social club to play games and have a chat to get things off your chest.
PD is cruel and can isolate us from activities that once where normal everyday tasks. I live on my own and yes, I dread the time when I can no longer look after myself, so try hard to keep going.
So keep posting on the forum and if you want to have a moan about things go ahead, we understnd.
Chin up love PB x
Hi pmc... really sorry to hear you're in such a "dreadful place" - we can all empathise as best we can, but only you really know how it is "where you are"...BUT.. as some have already said... a really warm welcome... and you'll find this is a good place... with good people.. fellow "sufferers"... and a lot of understanding and love...
Sorry.. read your post and am responding almost at a "knee jerk" cos it was so moving,, but has anybody said don't forget our HelpLine?? I can promise you, from personal experience, they are wonderful, understanding people... and will keep in touch all the while you need...
What you've been through/going through is b***** tough at the best of times... but being "one of us", too - how dare I feel sorry for me sometimes!!
Please keep us all informed and always... always.. don't bottle it up, tell us how it is.... "saying" it will help you.. and will give us an opportunity to have a meaningful dialogue - and think of without having to "second guess"...
So come and cry together... hopefully laugh, or at least, smile together...
Where we can't always help ourselves, there is always someone extending a hand - so grab hold!!... tonight!!
Thinking of you.... bursardavid
Sorry.. read your post and am responding almost at a "knee jerk" cos it was so moving,, but has anybody said don't forget our HelpLine?? I can promise you, from personal experience, they are wonderful, understanding people... and will keep in touch all the while you need...
What you've been through/going through is b***** tough at the best of times... but being "one of us", too - how dare I feel sorry for me sometimes!!
Please keep us all informed and always... always.. don't bottle it up, tell us how it is.... "saying" it will help you.. and will give us an opportunity to have a meaningful dialogue - and think of without having to "second guess"...
So come and cry together... hopefully laugh, or at least, smile together...
Where we can't always help ourselves, there is always someone extending a hand - so grab hold!!... tonight!!
Thinking of you.... bursardavid
Hi pmc.
People who bully are usually very insecure themselves. Try and remember that if it ever happens again.Don't let bullies beat you.Also, they are a minority. Meanwhile , try & follow the good advice others have given you here on the forum. So sorry about your loss. Best wishes.
EM
People who bully are usually very insecure themselves. Try and remember that if it ever happens again.Don't let bullies beat you.Also, they are a minority. Meanwhile , try & follow the good advice others have given you here on the forum. So sorry about your loss. Best wishes.
EM
Thanks so much for your replies.It was lovely to contact people who understand.
Does any on know any good tips for the extreme I'm suffering,caused by dystonia.My feet contract into tight balls but the pain goes up to my hips,where it is awful.It mostly caused by wear off,but can happen at other times unexpectedly.Leaving me in dreadful pain and unable to move,especially awful when I am in the street.
Any help would be greatly unappreciated.
Does any on know any good tips for the extreme I'm suffering,caused by dystonia.My feet contract into tight balls but the pain goes up to my hips,where it is awful.It mostly caused by wear off,but can happen at other times unexpectedly.Leaving me in dreadful pain and unable to move,especially awful when I am in the street.
Any help would be greatly unappreciated.
Hello pmc,
I too have very painful dystonia which sounds very similar to yours. Physiotherapy excercises may help. This one, kindly provided by Kate can be done several times a day. Holding on to a secure surface eg kitchen work-top, raise yourself onto your toes. Hold for a few seconds, then slowly lower. Repeat 5 times. Then, still holding on raise your toes upwards so you are "standing" on your heels. Hold, slowly lower and repeat.
A PD nurse suggested drinking tonic water - the quinine in it may help some people.
My consultant precribes Diazepam for me as a muscle relaxant. This does help, but not for long.
A rather more drastic solution is botox injections.This is said to be effecive, but needs to be repeated every 3 months
I too have very painful dystonia which sounds very similar to yours. Physiotherapy excercises may help. This one, kindly provided by Kate can be done several times a day. Holding on to a secure surface eg kitchen work-top, raise yourself onto your toes. Hold for a few seconds, then slowly lower. Repeat 5 times. Then, still holding on raise your toes upwards so you are "standing" on your heels. Hold, slowly lower and repeat.
A PD nurse suggested drinking tonic water - the quinine in it may help some people.
My consultant precribes Diazepam for me as a muscle relaxant. This does help, but not for long.
A rather more drastic solution is botox injections.This is said to be effecive, but needs to be repeated every 3 months
Dear PMC,
My heart goes out to you please do try all the things the others have said, also have you got a branch near you if so do think about joining. You don't say your age so perhaps if you don't like to join a branch perhaps there are other people in your area that you could get in touch with. Your local information support worker will be able to help you quite a lot and they may be able to put you in touch with other pwp's. They will be able to talk through the issues you have at work. It is so important for people with pd and their carer's if they have one to get together as they often become very good friends and this leads on to a very good social life with people who understand. My husband has pd and he had to go into a care home two years (he has had it for 30 years) so it has been very difficult for us living apart, I miss his presence all the time but I can't get into that it is too hard.
Please also think about counselling as you have had a double blow, and be kind to yourself now.
best wishes
vivian
My heart goes out to you please do try all the things the others have said, also have you got a branch near you if so do think about joining. You don't say your age so perhaps if you don't like to join a branch perhaps there are other people in your area that you could get in touch with. Your local information support worker will be able to help you quite a lot and they may be able to put you in touch with other pwp's. They will be able to talk through the issues you have at work. It is so important for people with pd and their carer's if they have one to get together as they often become very good friends and this leads on to a very good social life with people who understand. My husband has pd and he had to go into a care home two years (he has had it for 30 years) so it has been very difficult for us living apart, I miss his presence all the time but I can't get into that it is too hard.
Please also think about counselling as you have had a double blow, and be kind to yourself now.
best wishes
vivian
Thanks very much for your helpful ideas,I shall certainly try them out,although I'm not sure which bit of me could do with the botox most!
I really have to be quicker with my typing, or write shorter posts. I keep losing them.
I have found it somewhat difficult to reply to your post re isolation pms. My mother died in the same month as I was dx in 2009, and my son not very much later.
I had not been working for some time. I loved my job but health problems (which I now recognise to be pd related made, and caring for my mother it impossible for me to continue. I did not experience any bullying, but neither did I feel that I received any support. And my friends seemed to "back off". To be fair they were busy with work and families. And if GP's and hospital Drs could not say what was wrong, how could I expect friends & family to understand? After all I didn't. I remember well my mother telling me to "stop that awful shaking."
I agree wholeheartedly with all that other posters have said. Just one thing that I would add - The Samaritans are open 24 hours/day, 7 days/week, 52 weeks/year. Many people think that this organization is soley there to help those who are feeling suicidal. This is not the case. They do not advise but will let you talk and listen. Sometimes this may be all that is needed (in the short term) to get you through a rough patch.
I wish you all the best
I have found it somewhat difficult to reply to your post re isolation pms. My mother died in the same month as I was dx in 2009, and my son not very much later.
I had not been working for some time. I loved my job but health problems (which I now recognise to be pd related made, and caring for my mother it impossible for me to continue. I did not experience any bullying, but neither did I feel that I received any support. And my friends seemed to "back off". To be fair they were busy with work and families. And if GP's and hospital Drs could not say what was wrong, how could I expect friends & family to understand? After all I didn't. I remember well my mother telling me to "stop that awful shaking."
I agree wholeheartedly with all that other posters have said. Just one thing that I would add - The Samaritans are open 24 hours/day, 7 days/week, 52 weeks/year. Many people think that this organization is soley there to help those who are feeling suicidal. This is not the case. They do not advise but will let you talk and listen. Sometimes this may be all that is needed (in the short term) to get you through a rough patch.
I wish you all the best
I have just noticed that i addressed you as "pms"! Please forgive me
U sound like you're having a hard time.
There are all sorts of factors affecting hoe honest we r about our feelings.. there is a need to share but a real fear that we drive people away by being too honest ...... soem people can handle it and some cannot .... time and place palys a part as well.
I've found Counselling of use , its 1 place u can tell the truth . It lets the steam out of the kettle !
rgds
Andy (ojalahey)
----------------
There are all sorts of factors affecting hoe honest we r about our feelings.. there is a need to share but a real fear that we drive people away by being too honest ...... soem people can handle it and some cannot .... time and place palys a part as well.
I've found Counselling of use , its 1 place u can tell the truth . It lets the steam out of the kettle !
rgds
Andy (ojalahey)
----------------
hi im so sorry to her about the passing of your hubby,big hugs to you,i would give you one for real if i could reach you
,i understand how your feeling though,and i feel for you.the forum can give lots of surport and guidence,and many friends to help you,you will find many people in your position,and can come here then to open up and say how they feel,some times its best to get it all off your chest,makes you feel a little beter.i think everyones posts above of me have said it all,and all i can say is if you wont to chat any time,please pm me.x
,i understand how your feeling though,and i feel for you.the forum can give lots of surport and guidence,and many friends to help you,you will find many people in your position,and can come here then to open up and say how they feel,some times its best to get it all off your chest,makes you feel a little beter.i think everyones posts above of me have said it all,and all i can say is if you wont to chat any time,please pm me.x