Hi... diagnosed about a year ago (but realise things weren't right for a little while prior)..
One of the things that can send me into "blind panic" is when, or it seems, muscles in abdomen and/or chest decide to go rigid - then it seems (as it would, I suppose) to affect breathing..
Anybody (1) experience same thing... and/or (2) got any "tips" for dealing?
(By the way - just grateful to all subscribers... lots that we share is really encouraging and helps, certainly for me, not to feel I'm the only one that feels 'that way')..
Hi there,
I was diagnosed 3 years ago and one of my problems is difficulty with my breathing. I find it more when I have had a bit of exercise or dance then it seizes and I am out of breath, I just sit down and take deep breaths in and out till it settles down, also I seem to get a sigh in my breathing and in my speech there doesn't seem to be much you can do about it just add it to the list. Try and not panic too much. Take care.
Marymo
I was diagnosed 3 years ago and one of my problems is difficulty with my breathing. I find it more when I have had a bit of exercise or dance then it seizes and I am out of breath, I just sit down and take deep breaths in and out till it settles down, also I seem to get a sigh in my breathing and in my speech there doesn't seem to be much you can do about it just add it to the list. Try and not panic too much. Take care.
Marymo
Hi Marymo..
... just to say a sincere 'thank you' for taking the trouble to reply - and in so doing, believe me, you have encouraged and made me feel more at ease..
... and, maybe for those just reading this (maybe looking for a little reassurance yourself), you can see the Forum is a wonderful 'vehicle' for simply reaching out for some help and understanding..and there are plenty of friends out there that, like Marymo, are only too willing to share and help one another...
So, thanks again, Marymo... David.
... just to say a sincere 'thank you' for taking the trouble to reply - and in so doing, believe me, you have encouraged and made me feel more at ease..
... and, maybe for those just reading this (maybe looking for a little reassurance yourself), you can see the Forum is a wonderful 'vehicle' for simply reaching out for some help and understanding..and there are plenty of friends out there that, like Marymo, are only too willing to share and help one another...
So, thanks again, Marymo... David.
hi David,
This forum site has been a lifeline for me before I knew that it existed I felt so alone because no one else knew what I was going through and every time something else threw up I thought it was all in my mind or was led to believe so. We are all in this together although we don't all have the same symptoms or medication, we are a group who will get help from another sufferer to see if it can help and get reassurance. The sad thing about this illness is that it's thought to be an old persons disease which we know isn't so, and people look at you and don't see the real person underneath. Hope you have a lovely Christmas and just take each day as a bonus.
Marymo
This forum site has been a lifeline for me before I knew that it existed I felt so alone because no one else knew what I was going through and every time something else threw up I thought it was all in my mind or was led to believe so. We are all in this together although we don't all have the same symptoms or medication, we are a group who will get help from another sufferer to see if it can help and get reassurance. The sad thing about this illness is that it's thought to be an old persons disease which we know isn't so, and people look at you and don't see the real person underneath. Hope you have a lovely Christmas and just take each day as a bonus.
Marymo
Yes you're all helping me too, I am just the carer for h but I need you're help too cos I panic , thanks so much it is great to be able to pass on you're experience and insights to my h who is also blind. Yes he has little bit of the tight abdomen and breathing a bit love sunray
Hi Sunray...
.... at least your Forum name is a lovely encouragement.. but so sorry to hear about your husband... not only PD but blind... how do you both cope - (silly question really... you either don't or you have to.. suppose same for all of us but so terribly exacerbated for you)...
... There is always encouragement here - thankfully - 'cos although we are told we have to be positive.. well, on my own I don't do "positive".. but this Forum is great.. I've only "cried for help" a couple of times when things got really grotty, but always people have replied.. empathising but encouraging (and often with some good advice/experience - which you cannot rationally come up with for yourself in the "darker times")..
In addition, like your husband, I, too, have a lovely, committed wife.. grown children.. and lots of friends in our Church (two of whom also have PD!)..and I am so grateful to all of them... So... please count the folk here amongst your friends.. never be afraid to ask.. and if you need to shout at someone sometimes, just address it to me!!
Bursardavid..
.... at least your Forum name is a lovely encouragement.. but so sorry to hear about your husband... not only PD but blind... how do you both cope - (silly question really... you either don't or you have to.. suppose same for all of us but so terribly exacerbated for you)...
... There is always encouragement here - thankfully - 'cos although we are told we have to be positive.. well, on my own I don't do "positive".. but this Forum is great.. I've only "cried for help" a couple of times when things got really grotty, but always people have replied.. empathising but encouraging (and often with some good advice/experience - which you cannot rationally come up with for yourself in the "darker times")..
In addition, like your husband, I, too, have a lovely, committed wife.. grown children.. and lots of friends in our Church (two of whom also have PD!)..and I am so grateful to all of them... So... please count the folk here amongst your friends.. never be afraid to ask.. and if you need to shout at someone sometimes, just address it to me!!
Bursardavid..
hello BursarDavid,
I have asthma, but since Oct I have been having tests for my breathing problems. Its gotten worse. They tested my heart,but its ok, now I'm going for tests on my lungs.....we'll see what that brings. I was not aware that anyone else had the problem with the abdomen getting rigid. It is really bad if I lay on my back, then I panick too...cause I really, really can't breathe....
I'm in the US...so I always post at the wrong times...but will be back tomorrow - hope you have some help with your breathing soon........
nonnameme
I have asthma, but since Oct I have been having tests for my breathing problems. Its gotten worse. They tested my heart,but its ok, now I'm going for tests on my lungs.....we'll see what that brings. I was not aware that anyone else had the problem with the abdomen getting rigid. It is really bad if I lay on my back, then I panick too...cause I really, really can't breathe....
I'm in the US...so I always post at the wrong times...but will be back tomorrow - hope you have some help with your breathing soon........
nonnameme
Hi
Re: difficulty breathing and tight stomach muscles.
O/h had been progressively getting more bouts of this and 2 years ago was rushed to hospital from the GP surgery after making an appointment to discuss why ? and i suppose lucky for him as far as explaining what happens to the GP had an attack there !
He had every test available and eventually he was diagnosed with diaphragmatic dystonia if you google it is classed as separate disease although can rarely go alongside a dx of PD
Following several trials it was found to be responsive to Apomorphine which unfortunately is a DA and in o/h situation does not agree with him.
He has no choice though as the only rescue drug that helps when he has these episodes,
Apologies if this worries anyone it is not my intention but definately worth exploring.
Regards xx
Re: difficulty breathing and tight stomach muscles.
O/h had been progressively getting more bouts of this and 2 years ago was rushed to hospital from the GP surgery after making an appointment to discuss why ? and i suppose lucky for him as far as explaining what happens to the GP had an attack there !
He had every test available and eventually he was diagnosed with diaphragmatic dystonia if you google it is classed as separate disease although can rarely go alongside a dx of PD
Following several trials it was found to be responsive to Apomorphine which unfortunately is a DA and in o/h situation does not agree with him.
He has no choice though as the only rescue drug that helps when he has these episodes,
Apologies if this worries anyone it is not my intention but definately worth exploring.
Regards xx
Hi Nonnameme and bubble x...
Firstly, thank you bubble x - don't worry about adding to my (our) concern - if things aren't right, everything is worth following up.. so your thoughts are helpful..
Secondly... nonnameme.. your experiences rang such a chord... obviously, like for myself, I would wish you and I had got a cold or the flu (i.e. it would go away eventually - unlike this lot!)..but the irony is we can give each other such encouragement by sharing our experiences (and our fears if we're honest!)so thank you for doing just that.... now,together with all these other friends, we know we're not alone..
... and to all who subscribe, let's wish ourselves as peaceful and good Christmas as we can... and a kind New Year that, if it were possible, we would wish for..
Thank you, again, for all your support..
Firstly, thank you bubble x - don't worry about adding to my (our) concern - if things aren't right, everything is worth following up.. so your thoughts are helpful..
Secondly... nonnameme.. your experiences rang such a chord... obviously, like for myself, I would wish you and I had got a cold or the flu (i.e. it would go away eventually - unlike this lot!)..but the irony is we can give each other such encouragement by sharing our experiences (and our fears if we're honest!)so thank you for doing just that.... now,together with all these other friends, we know we're not alone..
... and to all who subscribe, let's wish ourselves as peaceful and good Christmas as we can... and a kind New Year that, if it were possible, we would wish for..
Thank you, again, for all your support..