hello, everyone,
I'm not sure if I am in the right place, I have been diagnosis in April 2010, with Functional neurological disorder,my whole life has been devastated, my legs don't work now, I drag myself around the house, I also have no bowel control either, which upsets, but I've been manage to control it with laxative, I also have tremors now and again, in the beginning I couldn't food myself, it was very scary at the time,Ive improved some what, I've managed to drive with hand control which has given me my independence back somewhat, I have to make sure that someone is at the other end as I can't manage on my own, but its better than nothing!
I have a support working now a few hours a week, which is a godsend, although its taken me a long time to accept her, we manage to go swimming once a week, which i love, the freedom,
my family and hubby have been brilliant, through all of this terrible illness, ive worked all my life, so being ill-health retired was and still is devastated for me, i miss the company, friendship, most of my friends have disappeared, i feel so lonely and isolated, i have tried to join the MS group, but the lady refused to have me as i didn't have MS, i was devastated again, i have joined the stroke group, but they are all very old, and mainly men, i am only 47 years, i am hoping that i can join your group, i need to speak to people who are going through the same thing!! I have already spoke to the north west parkinsons people, they don't see why i cant join, as i don't fit into any box, its very difficult to get support!!! if fact its does exist!!! you are my last hope!!! i hope i haven't moaned to much.........
yours happydog xxx
is that the same as functional neurological deficit?
if it is then that seems to be neuro-speak for 'somethings not working but we don't know what'.
my personal opinion is - make yourself at home but don't let all the other FNDs know or they be all over us. its a bit tricky. do you know someone with PD? perhaps you think you might have PD - wouldn't be the first time its not been diagnosed in a young person. if anybody asks i would go for that last one, it might even be right.
anyway - shows we're better than that MS lot.
It sounds like you've had a terrible time. Are you on any meds?
I don't do the cafe but i'm sure they'll be nice. if you can rhyme two words together why not try a poem in the corner?
cheers
if it is then that seems to be neuro-speak for 'somethings not working but we don't know what'.
my personal opinion is - make yourself at home but don't let all the other FNDs know or they be all over us. its a bit tricky. do you know someone with PD? perhaps you think you might have PD - wouldn't be the first time its not been diagnosed in a young person. if anybody asks i would go for that last one, it might even be right.
anyway - shows we're better than that MS lot.
It sounds like you've had a terrible time. Are you on any meds?
I don't do the cafe but i'm sure they'll be nice. if you can rhyme two words together why not try a poem in the corner?
cheers
hello happydog,
as far as I am concerned you are very welcome here.. And good for you for the driving & the swimming!
With best wishes
as far as I am concerned you are very welcome here.. And good for you for the driving & the swimming!
With best wishes
Welcome happydog to the forum. As far as I'm concerned you don't have to fit into any box to join us, we are all here to support and help each other. I'm sure you will find someone to chat with you no matter what time you are around and need company. We all have our moans and gripes but we also share the happy and good news times too. The social club site is a good place to start, there are word games and a general chat room so why not pop in some time.
Best wishes Px
Best wishes Px
Hi Happydog,
I say a big welcome to you.
I am new to this site in the last week as I was desperate and confused about my husbands diagnoses and subsequent treatment for Parkinsons. Everyone who replied to my posts have been very kind and understanding.
I can see no reason why you should be excluded from any site or group that deals with neurological conditions.
After all, I am not even sure my husbands diagnoses is correct and so little seems to be know about all these neuro and movement conditions that I feel everyone should be there to support each other.
I think you are amazing to manage to drive and swim when it seems you have had such an awful year, with so many health issues.
Regarding your friends, well I have found its times like these you really find out who your friends are and it can be an real eye opener. Those friends who let you down, just move on , you will find people who are more genuine and it's not worth wasting energy worrying about those who have not shown care and support for you.
Well done for accepting the assistance of a care worker, that must be hard after being so independant but it will mean you can really start to concentrate on yourself and keeping mobile as often as possible.
I hope you have a happy day today and a nice weekend.
I say a big welcome to you.
I am new to this site in the last week as I was desperate and confused about my husbands diagnoses and subsequent treatment for Parkinsons. Everyone who replied to my posts have been very kind and understanding.
I can see no reason why you should be excluded from any site or group that deals with neurological conditions.
After all, I am not even sure my husbands diagnoses is correct and so little seems to be know about all these neuro and movement conditions that I feel everyone should be there to support each other.
I think you are amazing to manage to drive and swim when it seems you have had such an awful year, with so many health issues.
Regarding your friends, well I have found its times like these you really find out who your friends are and it can be an real eye opener. Those friends who let you down, just move on , you will find people who are more genuine and it's not worth wasting energy worrying about those who have not shown care and support for you.
Well done for accepting the assistance of a care worker, that must be hard after being so independant but it will mean you can really start to concentrate on yourself and keeping mobile as often as possible.
I hope you have a happy day today and a nice weekend.
Hi Happydog, welcome. I have found it very helpful and everyone is very sympathetic and offer some great and inspirational advice. My husband(52) was newly diagnosed in april 3 days before our daughters engagement party. Its been an emotional 6mths and at times I don't know when we will get out of it. But with positive thinking lots of exercise we will get through this. His symptoms are nothing compared to some people and its great to see you are still able to drive that must be great for your independence. Keep your chin up and we are here at all hours if you need to chat..
Welcome From what I read on the web it seems to be a term used by neurologists when no other condition completely fits, so I can see how you might remain out in the cold,so to speak. As far as I am concerned you are welcome as you share many things in common to P.w.P.
Hello Happydog and a very warm welcome to the forum. I've just googled FND and it say's it's an umbrella term for a number of neuro symptoms that don't fit any specific condition. Well, I'm sure that you'll feel at home here because there are many people that have been in a similar position themselves before they received their pd diagnosis, some for a number of years.Anyway, I'm sure that you will find the forum useful.
Has your neuro put you on medication yet, if so what. It just struck me that if they don't know what your condition is, how can they treat it?
I was dx with PD over 10 years ago and worked full time for the first 8 years, retired about 3 years ago. My condition seems to have deteriorated over the last 6 months, so I don't really know what the future holds for me.....can't complain though, there are worse things in life I guess. Hope to chat with you along the way.
Take care
Glenchass
Has your neuro put you on medication yet, if so what. It just struck me that if they don't know what your condition is, how can they treat it?
I was dx with PD over 10 years ago and worked full time for the first 8 years, retired about 3 years ago. My condition seems to have deteriorated over the last 6 months, so I don't really know what the future holds for me.....can't complain though, there are worse things in life I guess. Hope to chat with you along the way.
Take care
Glenchass
.
Hi Happydog, nice name!
These medical types have massive egos, don't they? Nice flash cars, big shiny brass name plates on their doors. And most of all a desperate need to have the public believe they're scientific geniuses, sitting high up on their mighty thrones, waving their magic health-giving wands!
Unfortunately we know as well as they do that these geniuses have invented scores of meaningless phrases whose sole purpose is to cover up the fact that haven't got a clue what they're talking about, and have no idea what you're suffering from, nor how you got it or what to do about it.
Functional Neurological Disorder is just such a phrase. The only meaning it has is "It seems to be neurolgical (so I can't dump you off on another consultant), but beyond that I just haven't got a clue"
They'll probably stick you under observation for a couple of years, avoid medication if they can ("these drugs can do strange things to you, you know"), and then look round at their colleagues to find out what the current fashionable diagnosis is.
It took my own consultant 3 years to "upgrade" my diagnosis from "a Parkinsonian condition" to yer actual "Parkinson's Disease", and I know there are plenty in here in similar situations. Since [u]your[/u] consultant has yet to make a decision, PD is still a possibility, so you have every right to join us as a suspected PD patient.
Hope to see you around. There's usually someone here 24x7 if you can't sleep, have problems to discuss, or you just fancy a natter or want to play word games.
Take care,
Ray.
.
Hi Happydog, nice name!
These medical types have massive egos, don't they? Nice flash cars, big shiny brass name plates on their doors. And most of all a desperate need to have the public believe they're scientific geniuses, sitting high up on their mighty thrones, waving their magic health-giving wands!
Unfortunately we know as well as they do that these geniuses have invented scores of meaningless phrases whose sole purpose is to cover up the fact that haven't got a clue what they're talking about, and have no idea what you're suffering from, nor how you got it or what to do about it.
Functional Neurological Disorder is just such a phrase. The only meaning it has is "It seems to be neurolgical (so I can't dump you off on another consultant), but beyond that I just haven't got a clue"
They'll probably stick you under observation for a couple of years, avoid medication if they can ("these drugs can do strange things to you, you know"), and then look round at their colleagues to find out what the current fashionable diagnosis is.
It took my own consultant 3 years to "upgrade" my diagnosis from "a Parkinsonian condition" to yer actual "Parkinson's Disease", and I know there are plenty in here in similar situations. Since [u]your[/u] consultant has yet to make a decision, PD is still a possibility, so you have every right to join us as a suspected PD patient.
Hope to see you around. There's usually someone here 24x7 if you can't sleep, have problems to discuss, or you just fancy a natter or want to play word games.
Take care,
Ray.
.
Hi HappyDog,
Welcome to the forum!!
The MS forum twit (with all due respect to the twits!) sounds like a dictator. As if we all want to sign up for this pretisgious club of chronic illness.
Have you got a second opinion from a neuro? What are your symptoms? Situation permitting, it would be good if you could get some other opinions. A neuro specilising in movement disorders can either rule in or rule out PD or related illnesses. That could be a start, if you want to go that far that is.
It's great to see your support network is in place and is a strong one at that
Welcome again and best wishes to you and your family,
rico
Welcome to the forum!!
The MS forum twit (with all due respect to the twits!) sounds like a dictator. As if we all want to sign up for this pretisgious club of chronic illness.
Have you got a second opinion from a neuro? What are your symptoms? Situation permitting, it would be good if you could get some other opinions. A neuro specilising in movement disorders can either rule in or rule out PD or related illnesses. That could be a start, if you want to go that far that is.
It's great to see your support network is in place and is a strong one at that
Welcome again and best wishes to you and your family,
rico
A big fat PD welcome.
I am really proud to be part of this forum. It works things out together and comes out stronger. Welcome.
mrs.t.
I am really proud to be part of this forum. It works things out together and comes out stronger. Welcome.
mrs.t.
Hello FATDOG and welcome, hope you enjoy your time on the forum, be good to yourself.
Radz xx
Radz xx
I am so sorry, HAPPY DOG, when I was typing the above my lab walked across the room and I said to him, " boy oh boy Murphy, you are getting to be a Fat dog". The thought was still in my head answering your post, I am a twit at times.....sorry.
Radz xx
Radz xx
Hi i'm Magpie,
I think i start the forum thing all wrong sorry. I was diagnosed with parkinsons in 2000 after my right hand swelled and started shaking. I worked till 2006 when i had to give up, my decission and have not regretted it since. I'm a house husband as my wife works full time. I enjoy it but it takes me a while to the chores. I still drive and we've just moved so i've got the new garden to sort out and decoorating to do. I have to do things in bits as my legs do'nt like it if i do to much. I've joined the local branch and go there clinic once a month for therapy. I've built to ships Titanic/ Bismark. last year i put the Titanic in a newsagent window foor showand raised £142/ this year put ships in and raised £152. We are now in the process of raffling them off with 2 bottles of wine on the 8th September at a Cheese and Wine evening and hope raise a good amount of money to be split between the branch and the rescearch dept. My family are really great with me but can give me a kick up the backside which sometimes we all need. The people at the clinic are a nice bunch really freindly and helpful. For anyone who has just been diagnosed life can be just same with a possitiive attitude. I try while the weather is good to go for walk and i also do Tai Chi every Tuesday which restarts next month. I'm 60 now and still on the same medication, hopfully mmy consultant will me off lebadopamin for a bit longer keeping my fingers crossed.
I think i start the forum thing all wrong sorry. I was diagnosed with parkinsons in 2000 after my right hand swelled and started shaking. I worked till 2006 when i had to give up, my decission and have not regretted it since. I'm a house husband as my wife works full time. I enjoy it but it takes me a while to the chores. I still drive and we've just moved so i've got the new garden to sort out and decoorating to do. I have to do things in bits as my legs do'nt like it if i do to much. I've joined the local branch and go there clinic once a month for therapy. I've built to ships Titanic/ Bismark. last year i put the Titanic in a newsagent window foor showand raised £142/ this year put ships in and raised £152. We are now in the process of raffling them off with 2 bottles of wine on the 8th September at a Cheese and Wine evening and hope raise a good amount of money to be split between the branch and the rescearch dept. My family are really great with me but can give me a kick up the backside which sometimes we all need. The people at the clinic are a nice bunch really freindly and helpful. For anyone who has just been diagnosed life can be just same with a possitiive attitude. I try while the weather is good to go for walk and i also do Tai Chi every Tuesday which restarts next month. I'm 60 now and still on the same medication, hopfully mmy consultant will me off lebadopamin for a bit longer keeping my fingers crossed.
Hi Magpie,
Welcome to the forum! I wanted to write previously but have not had the chance.
If you start a new thread by yourself I am sure you will get quite a few replies and welcomes.
Well done to you the way you are being proactive. I find your story quite inspirational, living with PD for 10+ years and being so active and still no levodopa
If you wouldn't mind also going to my thread "Age and Date of Diagnosis" and adding your age of dx, date of dx and current meds, that would be great. It would definitely help and inspire all newly diagnosed PDers.
Again welcome and hope to hear from you,
Best wishes,
rico
Welcome to the forum! I wanted to write previously but have not had the chance.
If you start a new thread by yourself I am sure you will get quite a few replies and welcomes.
Well done to you the way you are being proactive. I find your story quite inspirational, living with PD for 10+ years and being so active and still no levodopa
If you wouldn't mind also going to my thread "Age and Date of Diagnosis" and adding your age of dx, date of dx and current meds, that would be great. It would definitely help and inspire all newly diagnosed PDers.
Again welcome and hope to hear from you,
Best wishes,
rico
Hi Magpie and welcome to the forum. You sound as though you have a very positive approach to your dx and it must help having a support network around you.
House husband mmmmm.......if you live anywhere near me I have a few chores
Enjoy the forum, there are some lovely people on here to chat with.
House husband mmmmm.......if you live anywhere near me I have a few chores
Enjoy the forum, there are some lovely people on here to chat with.