Young onset parkinsons disease

lila1

Hi Just wondered is anyone or their family living with parkinsons I was diagnosed in 2000 at the age of 39.

Nearly 2014

Hi. Have you chatted to anyone in the Parkinson's Association of Ireland?
The freephone helpline is 1800 359 359.





*Disclaimer: I work with Parkinson's Association of Ireland

lila1

Hi Yes I am a member think I know everything that there is to know about the illness at this stage have it 13 years now just thought if anyone wanted to ask anything maybe I could help thanks for your reply

Chrisita

Michael J fox was very young when diagnosed with parkinsons, perhaps younger than 39.

lila1

Yea you are right and he is still going strong and looking good into the bargain:)

Chrisita

There is some exciting new research on a gene mutation called MFHTR that will hopefully help many of us in the future. I dont have Parkinsons myself, but I do have have quirky gene expression here, which for me has caused life log depression, fatigue and anxiety. I have made great progress with vitamin/mineral rebalancing on the depression and anxiety fronts, but the fatigue is an ongoing battle. Anyway this research looks promising.

lila1

there is major reserch beginning in the near future in Frenchy hospital in bristol where they want pwp to volenteer to have an op to place 4 tubes into their brain there are going to be 36 people in this project half will receive the placebo meds and half will receive the real thing.The outcome should be interesting. If you dont mind me asking were you tested for the gene.

Chrisita

Through one of the Biobalance.org practitioners. This is mainly for mental health probs.

lemmno

lila1 wrote: »

Hi Yes I am a member think I know everything that there is to know about the illness at this stage have it 13 years now just thought if anyone wanted to ask anything maybe I could help thanks for your reply

Hi there, just wondering how your symptoms are now after 13 years? I think a big worry for people is 'what will I be like in 5,10 years time'. I know someone who has been diagnosed recently

JillyQ

My mother was diagnosed about 15 years ago, to be honest her symptoms havent really got any worse. From time to time she does complain about the discomfort, but she sticks rigidly to her med's schedules etc. she also gets massages done, she feels that it helps. She only recently joined the parkinsons assocation, she gets the speech therapy done through that.

lila1

lemmno wrote: »

Hi there, just wondering how your symptoms are now after 13 years? I think a big worry for people is 'what will I be like in 5,10 years time'. I know someone who has been diagnosed recently

Hi I had dB's two years and I can honestly say I am almost 100% except my walking is not great try and reassure your friend no one knows what lies ahead and a pwp is no different any more questions I will b only to glad to help

lila1

JillyQ wrote: »

My mother was diagnosed about 15 years ago, to be honest her symptoms havent really got any worse. From time to time she does complain about the discomfort, but she sticks rigidly to her med's schedules etc. she also gets massages done, she feels that it helps. She only recently joined the parkinsons assocation, she gets the speech therapy done through that.

Hi Jilly could I ask what age your mother is didn't realise the pai dealt with speech therapy wishing her continued good health

lemmno

He can get very down about it. Biggest change I see in him is he takes bad news very badly and is more nervous than before. Is that something you noticed yourself?

JillyQ

lila1 wrote: »

Hi Jilly could I ask what age your mother is didn't realise the pai dealt with speech therapy wishing her continued good health

She was in her late 50's when you got it first but wasnt actually diagnosed until her early 60s. The speech therapy is great the lady they have here in Galway does it in person and also through skype, if they cant make it to a session. I would contact you local parkinsons assocation to see if they have something like it in your area. My mum is Galway.

lila1

that is great that your mum is getting all the services that she needs and also that she is keeping so well I am in Donegal and althouh i have had speech therepy in the past i dont need it any more it would be physio i would need but no physo specialises in pd here
thanks for reply

JillyQ

lila1 wrote: »

that is great that your mum is getting all the services that she needs and also that she is keeping so well I am in Donegal and althouh i have had speech therepy in the past i dont need it any more it would be physio i would need but no physo specialises in pd here
thanks for reply

Lila the Galway parkinsons assocation have a physo here if you contact them they maybe able to give you her number and she might be able to help you with the name of someone up there.

lila1

Hi when i left hospital after being dianosed i said to myself its not cancer I am not going to die this is your lot make the best of it. Anxiety and depression are very common in pd and if he is newly diagnosed make sure he knows all about the side effects of medication tell him to ask his neuro plenty of questions. ps if you want to get in contact through e mail or fbook no problem will b only to happy to help ps nearly forgot to answer your question no i didnt have anxiety or depression thank .goodness What age is your friend

lila1

Thanks very much jilly we have one physio here who deals with everything i forgot to ask you dose your mum have access to a parkinsons nurse

JillyQ

lila1 wrote: »

Thanks very much jilly we have one physio here who deals with everything i forgot to ask you dose your mum have access to a parkinsons nurse

Lila im not sure about the nurse but i can ask her. I havent heard her talking about it.

Btrippn

Hey,

There's a Young Onset Parkinson's disease Meeting on the 8th March in Dublin. It's open to PD patients and their families and friends and could provide you with a better insight into managing your life around PD. Visit http://www.parkinsons.ie/YoungOnsetMeeting to register or for further information.

I'm a 22 year old final year biomedical student at TCD and have had manifesting Parkinson's Disease (PD) symptoms for the past 9 years. So far it hasn't hindered my capacity to achieve my goals. It has been an added challenge yes, and everyone deals/progresses differently but the main thing I believe is not to dwell on the diagnosis of "Parkinson's Disease". It's important to accept and adapt to your diagnosis but The early onset hereditary forms tend to differ from the common idiopathic PD that occurs in older people in the sense that it progresses much slower. In fact, I believe the early onset form will adopt a different clinical title within the coming years.

It's also important not to read too many blogs or online articles about peoples symptoms/experiences (hypocritical I know but make this an exception) yes they can be uplifting and provide you with an insight into the disease from a patient perspective but aren't always the best source of knowledge. Often I find the most severe sufferers will post on these pages and hence they don't represent the true spectrum of PD. This is another reason why the Parkinson's Foundation meeting might be a more authentic, supportive experience.

As mentioned earlier neurodegenerative research is progressing and small but novel improvements are being made everyday. I myself was involved in research in dystonia during a summer internship, I also took part in an early onset PD family study as a participant. I'd advise anyone interested in getting involved with research to mention it to their consultant. Getting involved really does make a difference as we are such a minority. Furthermore, if you're interested in the research that's occuring in Ireland check the parkinsons.ie page for information.

Coming from a scientific background I myself am very passionate about PD in every aspect. I think the early onset form is neglected in Ireland in terms of support groups. Hopefully this will change within the next few years and I intend to address this issue myself.

I hope this was helpful to anyone reading and I hope to see some of you at the meeting.

lila1

Hi first I want to say u are really brave and I really wish you the best of health for the future.yes u are absolutely right about not dwelling on it I think that is rwhat keeps me going I do my own thing ji take my meds but don't panic if I am half an hour late.one thing u say is about more severe people posting on forums before I had dB's I have to say I was pretty bad I couldn't talk walk or do anything for myself it really is not an easy illness to handle if it gets the right grip yea I know about the meeting in Dublin but that is 4 hours from me they are having one closer to me in April

pog it

JillyQ wrote: »

My mother was diagnosed about 15 years ago, to be honest her symptoms havent really got any worse. From time to time she does complain about the discomfort, but she sticks rigidly to her med's schedules etc. she also gets massages done, she feels that it helps. She only recently joined the parkinsons assocation, she gets the speech therapy done through that.

Hi jilly my dad has parkinson's and now parkinson's related dementia but he didn't get diagnosed with PD until he was in early sixties.
I'm so happy to hear your mum is doing so well. She obviously has a really good consultant. Can I ask who her consulting neurologist is?

JillyQ

pog it wrote: »

Hi jilly my dad has parkinson's and now parkinson's related dementia but he didn't get diagnosed with PD until he was in early sixties.
I'm so happy to hear your mum is doing so well. She obviously has a really good consultant. Can I ask who her consulting neurologist is?

Hi Pog i have just PM'd you his name. My mum raves about him. My Mum was with him a couple of weeks ago and he is still talking about new treatments with her. Thats one of the things i like about him, he dosent right people off because of age.

Btrippn

lila1 wrote: »

Hi first I want to say u are really brave and I really wish you the best of health for the future.yes u are absolutely right about not dwelling on it I think that is rwhat keeps me going I do my own thing ji take my meds but don't panic if I am half an hour late.one thing u say is about more severe people posting on forums before I had dB's I have to say I was pretty bad I couldn't talk walk or do anything for myself it really is not an easy illness to handle if it gets the right grip yea I know about the meeting in Dublin but that is 4 hours from me they are having one closer to me in April

Hi,
Thank you for your comment. I realise you started this thread, my comments weren't aimed at you specifically but were more appropriate for newly diagnosed people who might happen to view this thread, I didn't mean for it to across that way. You represent the people who provide an honest story of their experiences for example DBS and it sounds like you have had many troubles with PD and I didn't mean to come across as young and ignorant I was trying to portray my story rather than compare it to yours.

When I used the word “severe” I meant in the sense of people posting who may not be as truthful as yourself and perhaps focus on the negatives rather than offering honest advice because they haven’t yet managed to get to the same stage of adaptation and acceptance that you have. By “dwell” I was referring to the title of PD, often it scares early onset patients when they are first diagnosed with Parkinson ’s disease they picture an elderly patient with idiopathic PD rather than a young person with early onset PD but do not realise that they are two different things. I think this definitely stresses the need for a support group in Ireland for young patients would you agree?

lila1

HI Yea there is definately a need for a support group in Ireland but will people go that is the question. When I was first diagnosed there was no one in my area with pd except a man of about 75 who said to me "dont worry about it it wont do u a bit of harm" The nearest group in my area is an hour and a half's drive away. I really would not want to scare anyone but at the same time would not want to mislead anyone either We were talking about support groups do I am a member of pai there are 116 registered members and no one asks any questions Myself and another lady also young onset are in the chatbox almost every night from 8 to 10 this past 3 years and no one uses it. It is a mystery to me have a look at the recent posts title to post or not to post written by myself

lila

lemmno

lila1 wrote: »

Hi when i left hospital after being dianosed i said to myself its not cancer I am not going to die this is your lot make the best of it. Anxiety and depression are very common in pd and if he is newly diagnosed make sure he knows all about the side effects of medication tell him to ask his neuro plenty of questions. ps if you want to get in contact through e mail or fbook no problem will b only to happy to help ps nearly forgot to answer your question no i didnt have anxiety or depression thank .goodness What age is your friend

My dad's 59. I think he's had it a while to be honest but it was only diagnosed last year. He went on medication and the symptoms appeared pretty much overnight. We're in Galway and at the moment still finding our feet with it, he won't do everything the doc is telling him to do, tai chi was recommended to him!

lila1

Hi Lemmo Yes I would believe you when you say he had it long before he was diag I had it a good two years before diag. The thing is it creeps up on you so slowly and before you know it there is another tell tale sign that things are not right You say your father wont do what the doc tells him he just dosent want to believe he has an ilness I dont know about tai chai but would your father go? Sorry cant figure out about the symptoms suddenly appearing more after starting meds could i ask what meds he is on

lila

JillyQ

lemmno wrote: »

My dad's 59. I think he's had it a while to be honest but it was only diagnosed last year. He went on medication and the symptoms appeared pretty much overnight. We're in Galway and at the moment still finding our feet with it, he won't do everything the doc is telling him to do, tai chi was recommended to him!

We are in Galway as well the Galway Parkinsons assocation is brillant, they work tirelessly with people in Galway who have parkinsons, through speech therapy, phyiso etc. I went to the last meeting with my Mum, there was about 30 people there, ppl with it and family members.

lemmno

The symptoms appearing overnight could just be me..it could be that it was only after his diagnosis that we began to notice things. He accepts he's ill but has written himself off already-you plan things for the future and he says he doesn't know how he'll be down the line. He takes the meds(will find out name later) religiously and lifts small weights..the tai chi was a step too far though(he's a 59 year old country man!)
Don't get me wrong, he can have great days but bad ones too where he can get really down. The cold weather affects him too. Now that the days are getting longer I can already see his spirits lift a little bit but I'd love to know if any of you have any little tips on how I could make his life easier-without making him feel like an invalid.

lila1

hi lemmo.

Do not make a fuss or treat him any differently to what you did before his diagnoses. Dont run and do things for him even if you see he is struggling a bit because he will get there in his own time. I dont know what your dad symptoms are if he has a tremor of if he has slowness of movement or both. Assure him he is far from written off. My own cousin also has pd diag about 14 years ago she still goes to ceile dancing twice a week and is never off the road in the car and she is 67. Would your dad dance? set dancing is supposed to be very good for pwp ps i will send you a pm

lila

JillyQ

Lila there is actually a proven link between Set Dancing. There is a conference every year down in Clare about it. My mother is in her 70's now and still doing all the things she normally did all be it a bit slower and bit more drawn out.

lila1

Felek in co clare prob not spelt right there was a get together in athlone
last year was your mum at that they done the set dancing there and they also had yoga you can see the pics on the pai website

JillyQ

Lila she was at the one in Feakle not sure about Athlone.