annabernadette,trees,xx
Hello Emswife
when i was dx in jan this year, i must admit it was difficult for me and i was angry and all the other emotions that it hit,my husband 2 nites ago only began to talk on our he felt about the parkinsons which i only ever refer it has not disease because i personally don't like it.
it all depends on how you both relate to each other ,some couples talk how they feel some do not.but the must important thing is that affects both of you ,the person with parkinsons and your o/h.
i must admit i was upset to know that my o/h was,nt coping well,so i made a promise to him that i will help him through his feelings about parkinsons and anything that bothers me i will talk as well.
i wish you both well and keep posting
janine
when i was dx in jan this year, i must admit it was difficult for me and i was angry and all the other emotions that it hit,my husband 2 nites ago only began to talk on our he felt about the parkinsons which i only ever refer it has not disease because i personally don't like it.
it all depends on how you both relate to each other ,some couples talk how they feel some do not.but the must important thing is that affects both of you ,the person
with parkinsons and your o/h.i must admit i was upset to know that my o/h was,nt coping well,so i made a promise to him that i will help him through his feelings about parkinsons and anything that bothers me i will talk as well.
i wish you both well and keep posting
janine
Ali J I think you are doing really well and I like your postings.
Morning all,
would,nt it be nice just for 1 day wake up without any health issues,why i say that is at times ,is that im reminded by my hubby that i cannot do what i want.at the moment he is so protective its driving me mad and feel i need some space.don't get me wrong he means well but when you have parkinsons you live,think,and feel pd 24/7 and it gets to you.sometimes i want to go for some me time or drive to a place i enjoy and can relax .i understand it is very differcult for family,friends or carers they just what's in your best interest and care for you,but please all we ask sometimes is give us space and freedom while we can because im me and i want to live and not reminded all the time i have health problems and pd .sorry,for waffling on !!!
would,nt it be nice just for 1 day wake up without any health issues,why i say that is at times ,is that im reminded by my hubby that i cannot do what i want.at the moment he is so protective its driving me mad and feel i need some space.don't get me wrong he means well but when you have parkinsons you live,think,and feel pd 24/7 and it gets to you.sometimes i want to go for some me time or drive to a place i enjoy and can relax .i understand it is very differcult for family,friends or carers they just what's in your best interest and care for you,but please all we ask sometimes is give us space and freedom while we can because im me and i want to live and not reminded all the time i have health problems and pd .sorry,for waffling on !!!
Hi Janine,
I know what you mean, on a smaller scale perhaps. I have a neighbor/friend who knows about my health issues, and sometimes she is too protective/worrisome. Last week, after I went grocery shopping, I left my car doors open, as bringing in the bags ( about 8 of them). Well, when I saw her the next day, she wanted to know if something had been wrong, why were all the doors open so long? I said I was fine, I was just putting some things away (like meat in the fridge)...think I had gotten a phone call, which I took right away... and she acted very concerned. What I don't think most people without PD realize is that its a slow progressing disease, and lots of people who get it, have mild symptoms at first.
I go see the neuro. next Monday, and I am worried about what my fiance' will do...what will be his reaction to the doc visit...and my dx. I also don't like to think about this illness 24/7, who would? My grandchildren are little, so they have no idea there's a problem, so being with them is like a bit of "vacation" from it, if I don't have bad symptoms when I'm with them. They only know that 'nonnameme" is getting older, and tires more easily now.
Hope you are feeling ok today....not too bad?
I know what you mean, on a smaller scale perhaps. I have a neighbor/friend who knows about my health issues, and sometimes she is too protective/worrisome. Last week, after I went grocery shopping, I left my car doors open, as bringing in the bags ( about 8 of them). Well, when I saw her the next day, she wanted to know if something had been wrong, why were all the doors open so long? I said I was fine, I was just putting some things away (like meat in the fridge)...think I had gotten a phone call, which I took right away... and she acted very concerned. What I don't think most people without PD realize is that its a slow progressing disease, and lots of people who get it, have mild symptoms at first.
I go see the neuro. next Monday, and I am worried about what my fiance' will do...what will be his reaction to the doc visit...and my dx. I also don't like to think about this illness 24/7, who would? My grandchildren are little, so they have no idea there's a problem, so being with them is like a bit of "vacation" from it, if I don't have bad symptoms when I'm with them. They only know that 'nonnameme" is getting older, and tires more easily now.
Hope you are feeling ok today....not too bad?
hi polly ddunna thinks i spoke with u before but i just saw ur post above and i would likes to say thankyou very much for ur thoughts ,and i hopes u doin alrite xx
Hello all. I'm jenniferchristine and I'm new. I've read all your posts and every time I read anything on the forum there is something that touches our lives. Be it symptoms, affects or about feelings. My hus has p/s and mild dementia which maybe Lewy Body. We talk all the time, about how the illness affects us both but it wasn't always like that. He found it difficult to express his feelings; I was the opposite.
Since his diagnosis in April this year (has had symptoms for 10 yrs)which he found hard to cope with, I carefully forced the issue of facing up to things and being able to talk freely.
He hated it at first and especially the input from the Parkinson's team, namely the p/s nurse and mental health care nurse who came to the house, because they encouraged him to read lots of material on Parkinson's. Gradually he admitted that it became much easier and he felt so much happier when he accepted the illness and opened up generally. In fact it has drawn us closer.
My husband's family are awful about the illness, don't want to accept it and don't want to hear anything but good news, so when they ask after him, with the exception of one lovely couple, he tells them what they want to hear which really narks me. Thank god my family are totally supportive but it's great to know all you guys are out there with understanding and care.
Since his diagnosis in April this year (has had symptoms for 10 yrs)which he found hard to cope with, I carefully forced the issue of facing up to things and being able to talk freely.
He hated it at first and especially the input from the Parkinson's team, namely the p/s nurse and mental health care nurse who came to the house, because they encouraged him to read lots of material on Parkinson's. Gradually he admitted that it became much easier and he felt so much happier when he accepted the illness and opened up generally. In fact it has drawn us closer.
My husband's family are awful about the illness, don't want to accept it and don't want to hear anything but good news, so when they ask after him, with the exception of one lovely couple, he tells them what they want to hear which really narks me. Thank god my family are totally supportive but it's great to know all you guys are out there with understanding and care.
Hello Jenniferchristine,
i was dx in jan this year age42 and at first i was in shock but now i find everything about pd as much as i can,even though i meet it head on and talk to my o/h about the future i feel its important to communicate with family and friend.don,t get me wrong i will not come to terms with it and have only one word for it(hate)for the pd.but i have like many others on this forum just carry on with my life and make what i can.
i understand that many pwp do not want to face up to the dx and have nothing to do with it at first but as time goes by gradually you start and think about pd each day and in time want to know.
thinking of you both and beleive me you are in the right place on this forum for so many are willing to give advice,support or just listen,we all care for each other.
i was dx in jan this year age42 and at first i was in shock but now i find everything about pd as much as i can,even though i meet it head on and talk to my o/h about the future i feel its important to communicate with family and friend.don,t get me wrong i will not come to terms with it and have only one word for it(hate)for the pd.but i have like many others on this forum just carry on with my life and make what i can.
i understand that many pwp do not want to face up to the dx and have nothing to do with it at first but as time goes by gradually you start and think about pd each day and in time want to know.
thinking of you both and beleive me you are in the right place on this forum for so many are willing to give advice,support or just listen,we all care for each other.
Thank you Janine.
I cannot say how much people like yourself are bringing me comfort. Until I joined the forum (had difficulty gaining access for ages - it didn't like my e address) I had no idea how much emotion I was burying. Some replies have nearly brought me to tears and some much needed laughter.
I understand how you're feeling. We have lost so much to park's. Our livliehood and possibly our home if the demonic three (Cameron Clegg and Osbourne) get their way to mention but two and maybe hate is lurking somewhere in our emotions.
We have realised through reading every category, that it's possible hus has had Parky's for many more years than was realised. I wish I'd known but there's no doubt that my own problems have made me empathetic to hubby's difficulties.
Makes you wonder doesn't it?
Was I meant to meet him to help and support him?
Please message me if you want to rant and rave the hate out. It's okay to be angry!
I cannot say how much people like yourself are bringing me comfort. Until I joined the forum (had difficulty gaining access for ages - it didn't like my e address) I had no idea how much emotion I was burying. Some replies have nearly brought me to tears and some much needed laughter.
I understand how you're feeling. We have lost so much to park's. Our livliehood and possibly our home if the demonic three (Cameron Clegg and Osbourne) get their way to mention but two and maybe hate is lurking somewhere in our emotions.
We have realised through reading every category, that it's possible hus has had Parky's for many more years than was realised. I wish I'd known but there's no doubt that my own problems have made me empathetic to hubby's difficulties.
Makes you wonder doesn't it?
Was I meant to meet him to help and support him?
Please message me if you want to rant and rave the hate out. It's okay to be angry!
Hi all. Had a fright this morn. I had an athsma attack. It was bad; I couldn't move. For the first time in ages hubby panicked because he couldn't remember where I keep my emergency kit. It's beside the toothpaste in the bathroom; he sees it every day!
Had enough breath to gasp out where it was and he got it, just in time. The effect it had on both of us was significant. We thought we were managing well. Now we've both been reminded sharply how fragile we are.
I've got a lung disease (never smoked a fag in me life - just everybody elses I guess, which seriously p**s me off) and lately found it hard to move around without being breathless despite all the meds.
But now it's scaring me. I need to be as well as poss for HIM.
Had enough breath to gasp out where it was and he got it, just in time. The effect it had on both of us was significant. We thought we were managing well. Now we've both been reminded sharply how fragile we are.
I've got a lung disease (never smoked a fag in me life - just everybody elses I guess, which seriously p**s me off) and lately found it hard to move around without being breathless despite all the meds.
But now it's scaring me. I need to be as well as poss for HIM.
Hi jenniferchristine,
sorry to hear about your asthma attack not very pleasant and frightening for you and o/h.hope you are feeling a little better with the medication to treat the attack.
i also suffer with asthma but not as bad as you,but back in august i was very ill with flu and chest infection and could work for 3 weeks .
this made my parkinsons worst has unknown to me took all the cold remedy's under the sun and it interacted with my pd meds.
take care of yourself and take it easy this afternoon.
sorry to hear about your asthma attack not very pleasant and frightening for you and o/h.hope you are feeling a little better with the medication to treat the attack.
i also suffer with asthma but not as bad as you,but back in august i was very ill with flu and chest infection and could work for 3 weeks .
this made my parkinsons worst has unknown to me took all the cold remedy's under the sun and it interacted with my pd meds.
take care of yourself and take it easy this afternoon.
Thank you Janine. I'll do my best, but a donkey sized Newfoundland and not the smallest Labrador don't understand the meaning of rest!
Luckily our garden is huge (great in theory for the dogs - not so great on mowing days) and we can chuck em outside (not literally - not wishing to incur wrath of animal lovers.)
However this doesn't cut it with them. We get that look..'surely you jest'.
Luckily our garden is huge (great in theory for the dogs - not so great on mowing days) and we can chuck em outside (not literally - not wishing to incur wrath of animal lovers.)
However this doesn't cut it with them. We get that look..'surely you jest'.
Hi again Janine. Whilst hubby slept I got onto here and flipped between threads. Really enjoyed myself in Social Club. As for the dogs, they're still waiting!
Hi JenniferChristine,
I had a similar experience with my asthma last week. I had a sinus infection, with a cold, and I have sleep apnea, where I stop breathing an average of 12x an hour. That nite I woke 3x, each time completely closed up, not able to breathe. Almost called 911 (here in the US)...but figured I could not speak, so it might have been useless anyway. My o/h was asleep, and snoring...I think he needs to learn how to do the Heimlich manuever, just in case. I will be getting a cpap machine to help me breathe while sleeping, soon. But each nite I worry -will I make it thru. I have an asthma inhaler, but it does not give me much relief, when it is that bad. I finally gained my breath again, each time. It is scary!
I am not yet dx with PD, but have most of the symptoms. They are working on the sleep apnea first. I think they did not want to give me the bad news at the holidays, really.
Today I went and got my flu shots, and now am sore, and very tired.
hope you are doing better today....
I had a similar experience with my asthma last week. I had a sinus infection, with a cold, and I have sleep apnea, where I stop breathing an average of 12x an hour. That nite I woke 3x, each time completely closed up, not able to breathe. Almost called 911 (here in the US)...but figured I could not speak, so it might have been useless anyway. My o/h was asleep, and snoring...I think he needs to learn how to do the Heimlich manuever, just in case. I will be getting a cpap machine to help me breathe while sleeping, soon. But each nite I worry -will I make it thru. I have an asthma inhaler, but it does not give me much relief, when it is that bad. I finally gained my breath again, each time. It is scary!
I am not yet dx with PD, but have most of the symptoms. They are working on the sleep apnea first. I think they did not want to give me the bad news at the holidays, really.
Today I went and got my flu shots, and now am sore, and very tired.hope you are doing better today....
Hi all,
thats something i need to sort out is my flu jab ,never had the time to make an appointment always something crop up.been contrating on getting my pd meds correct and everything else has gone into the background .nobody i know is their and the pd ive afraid will show ,my mistakes when i write posts and spelling mistakes are to see.dont want to draw attention to my self.dont get me wrong i meet pd head on but their are times i just do not want to say anything,i guess under all the feelings their are times i cannot handle.
thats something i need to sort out is my flu jab ,never had the time to make an appointment always something crop up.been contrating on getting my pd meds correct and everything else has gone into the background .nobody i know is their and the pd ive afraid will show ,my mistakes when i write posts and spelling mistakes are to see.dont want to draw attention to my self.dont get me wrong i meet pd head on but their are times i just do not want to say anything,i guess under all the feelings their are times i cannot handle.
Didn't bother with the flu jab, too much hassle.
Hi nonnameme
Thank you for your message.
I can relate to your problems. Also have sinus stuff. It's called Polypoidal Rhinosinusitis (I think!) So when you sleep you get post nasal drip, it goes into your lungs, which in turn causes you to choke and gives you a cough that makes you sound like Muttley. Or worse, a 60 a day person. Either way, people visibly make a detour round you when hacking in public places. Sounds like a case of serious bronchitis yet there's no infection.
The meds dont seem to be working so well lately, going up and down stairs has become hazardous. Shame the nebuliser isn't portable so I could carry it on my back. The medics don't want me to use it, they prefer the meds.
Hubby has always been alarmed by my stertorous breathing at times, but it never bothered me until that morning. Now I carry an inhaler at all times aware of the risk.
We can so do without this with regard to his Parky's. I like to be on top of things but the perishing flesh 'as they say'is weak.
Take care
JC
Thank you for your message.
I can relate to your problems. Also have sinus stuff. It's called Polypoidal Rhinosinusitis (I think!) So when you sleep you get post nasal drip, it goes into your lungs, which in turn causes you to choke and gives you a cough that makes you sound like Muttley. Or worse, a 60 a day person. Either way, people visibly make a detour round you when hacking in public places. Sounds like a case of serious bronchitis yet there's no infection.
The meds dont seem to be working so well lately, going up and down stairs has become hazardous. Shame the nebuliser isn't portable so I could carry it on my back. The medics don't want me to use it, they prefer the meds.
Hubby has always been alarmed by my stertorous breathing at times, but it never bothered me until that morning. Now I carry an inhaler at all times aware of the risk.
We can so do without this with regard to his Parky's. I like to be on top of things but the perishing flesh 'as they say'is weak.
Take care
JC
Hi to anyone,
not been on this forum quite awhile since jan and had frindship ,good advice and support from all of you and greeted new pwp but not been the forum awhile in hospital very poorly also my parkinsons has gone worst. im a person willing to help other people when i can with want i know may sometimes gets it wrong and sometimes get it right i posted on the forum for the very first time last night and only one reply ,to me was strange and felt quite hurt.the hospital thought i had a stroke or bleed and thankgoodness not but the feeling of worry i had .has i came home i went straight on the forum to count on my friends and talk since im in the same boat has everyone else a person with parkinsons i need this support.
this how i feel,sorry for being truthful but i feel hurt and need people on here
take care
janine
not been on this forum quite awhile since jan and had frindship ,good advice and support from all of you and greeted new pwp but not been the forum awhile in hospital very poorly also my parkinsons has gone worst. im a person willing to help other people when i can with want i know may sometimes gets it wrong and sometimes get it right i posted on the forum for the very first time last night and only one reply ,to me was strange and felt quite hurt.the hospital thought i had a stroke or bleed and thankgoodness not but the feeling of worry i had .has i came home i went straight on the forum to count on my friends and talk since im in the same boat has everyone else a person with parkinsons i need this support.
this how i feel,sorry for being truthful but i feel hurt and need people on here
take care
janine
Janine =I am so sorry that you are feeling so rotten. i did see your post last night, but as I was having a bad time myself I thought it wiser not to reply That was unkind of me & I apologise
Hugs to you, Janine.
This stupid, weird "condition" we have, with its ups & downs or ons and offs, leads us all (especially me) to forget the obvious. When we are down we turn to the forum for help, but forget that those on the other end of the keyboard have their own problems, and they too may be looking to be perked up by someone in good form.
When I look back at some of my own posts made when I felt life was excrement, I'm very embarrassed. Sometimes I've let out streams of pointless bile at old friends and newbies alike, who'll wonder what's happened to "good old Ray".
Perhaps we should start all posts with a title of "GOOD MOOD" or "BAD MOOD", to warn readers what they might be hit by!
xx
This stupid, weird "condition" we have, with its ups & downs or ons and offs, leads us all (especially me) to forget the obvious. When we are down we turn to the forum for help, but forget that those on the other end of the keyboard have their own problems, and they too may be looking to be perked up by someone in good form.
When I look back at some of my own posts made when I felt life was excrement, I'm very embarrassed. Sometimes I've let out streams of pointless bile at old friends and newbies alike, who'll wonder what's happened to "good old Ray".
Perhaps we should start all posts with a title of "GOOD MOOD" or "BAD MOOD", to warn readers what they might be hit by!
xx