Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Probable parkinson's disease at only 42.

17 replies

pralinegirl · 15/07/2008 21:51

For about 3 years have had jerky tremor in right hand. Spread to right leg and also affects my dominant left hand slightly, no tremor but writing and typing bad. After being reassured by gp two or more years ago neurologist did a newish type of scan and it looks like I may well have parkinson's he says. I feel like I am living in a nightmare - this was two months ago. I'm only finding the strength to go on for my family, son is only 4. I am terrified. Because it is not formally diagnosed and is still mild I am not on any drugs yet for it. Does anyone else out there have this or any similar condition? - I feel so isolated, as if I have no real future. Am dragging myself into work each day because at home I am worse but any time I think about it I feel desperate.Until recently I was a very fit healthy person,in all ways.

OP posts:
ButterflyBessie · 15/07/2008 21:52

I am so sorry to read this, I don't have any knowledge of this disease but wanted to keep thread bumped for you

Dottydot · 15/07/2008 21:56

I'm so sorry you're feeling so down. Have you tried any support websites or maybe go to your GP and ask if there's a local network you can access? You need to talk about it and maybe talking to others with something similar will help?

I know it's not the same at all, but when I was diagnosed with having Coeliac disease, I found the Coeliac society incredibly helpful - particularly their website. I was miserable when I first got the diagnosis and it helped to go on there and be bloody miserable!

Others on MN will have experienced something similar to what you're going through I'm sure - hopefully someone will be along soon with more relevant experience, but please keep posting.

Tinker · 15/07/2008 21:57

How frightening. Isn't this what Michael J Fox has? He must have been similar age. Also Ray Kennedy (ex Liverpool player). Will a formal diagnosis make you feel "better"? At least treatment can be started. I don't know what to say but it must be terrifying for you.

Dottydot · 15/07/2008 21:58

this might help?

Sorry - you've probably already googled lots, but just in case.

Doodle2U · 15/07/2008 21:58

My brother-in-law was diagnosed with early onset Parkinson's when he was 42 (about 4 years ago).

Firstly, a proper DX so you know what's what.

Second, the drugs used to control everything are so much better than they were only a few short years ago. Takes a bit of fiddling around with the dosages but once you're on the right levels, they help enourmously.

Thirdly, do not give up hope. Lots of research going in to this at the moment and quite a few avenues, including stem cell, look very promising.

If you do have Parky's - don't dispair. There are things you can take, therapies you can use, all sorts of stuff and please remember, you are not alone....there are many, many younger people out there with the same thing and they are leading full and fulfilling lives, just like you will.

Hope this helps.

Doodle2U · 15/07/2008 22:00

"enourmously." - that's not the right spelling, is it?

enormously?

sallystrawberry · 15/07/2008 22:00

This reply has been deleted

Message withdrawn at poster's request.

Original poster
pralinegirl · 15/07/2008 22:18

Thanks all of you for the support and advice. Have tried parkinson's organisation and use their talk forum regularly. Its helpful but of course the feelings and thoughts are still there. Doodle2U, my neurologist is excellent and is sending me to a specialist in london to try to firm up diagnosis as much as they can. He refers to it as 'eminently treatable' if not curable so am pinning my hopes on the medication angle and trying to remember all you rightfully say about the future and the progress they may make. I am thinking of seeking therapy. Trouble is when I talk about it even to my husband I cry and cry and afterwards everything is worse, including the symptoms.When I am at work I switch to 'coping' mode. If anyone has had talking therapy to help them adjust to something like this did it help? My family are great except my mum is in her 70s, lives far away and if I tell her how bad I feel she gets scared. I am in limbo waiting for some kind of plan. My husband will talk about it but only if I do and can't see how it will help. He is relentlessly positive. Sometimes this is better, sometimes I wish he'd ask how I feel.

OP posts:
Doodle2U · 15/07/2008 22:56

Dopamine, or lack of it, is supposed to have a huge impact on moods, depression, ability to cope etc. Hopefully, the final DX and potentially, the dopamine drugs (or other drugs, depending on what you're prescribed) might help with your feelings of lowness.

It's a shitty ride for a while PG, if our Stephen's experiences are anything to go by but you can come out the other side of this. As long as you have your wonderful sounding DH by your side, you'll see this through. I'm sure of it.

Stephen is well adjusted to it all now. Once he'd got his meds sorted out, he felt in himself like he could handle it all much better. His sense of humour remains fully in tact (if the shitty, tat solar powered garden ornament, OMG I've never seen anything so hidious, fairy he bought me for my birthday is anything to go by!) and since being diagnosed, he's met a lovely lady and his sex life has never been so good!

Hang in there PG. Everything crossed for you hear

Doodle2U · 15/07/2008 22:58

here, I meant "everything crossed for you here"

For the love of God, I'm getting thicker by the minute

Original poster
pralinegirl · 16/07/2008 14:10

Thats ok, I'm so preoccupied I notice nothing wrong!Apparently the meds can trigger obsessive shopping in some folks - so lets hope he sticks at one garden ornament! See sense of humour not completely gone.....Its just trying to find things to hold onto to feel safe. I sometimes give DS hugs for the sheer normality and comfort of it, to remind me that how I cope with this is what he'll remember, mummy crying now and then is fine, mummy yelling at him and crying all the time and giving up is not fine. Thanks.

OP posts:
Aniyan · 16/07/2008 14:21

Hi pralinegirl - can't give you much advice, but wanted you to know that my brother was diagnosed with early-onset Parkinson's about a year ago - he's in his early 40s

It's taken a while to find the right meds / doses for him, but now he's so much better (drugs have not just controlled his symptoms but pretty much eradicated them) and his prognosis is excellent. He's working & functioning pretty much as normal now, which he hadn't been for over a year before his diagnosis.

He has a dp and two young dcs, and I know the last year has been an emotional roller-coaster for them all, but things are much better now & look very good for the future.

Just wanted to tell you this so you know you are not alone, and that there can be very positive outcomes, even if it all seems very scary now.

I'm several steps removed from my brother's situation, and even so it was a real shock & took some coming to terms with, so you have my sympathy - stay strong.

summer111 · 16/07/2008 16:50

Pralinegirl, my very good friend has MS and aside from regular hospital visits, with meds is pretty much symptom free and leads a very normal life. I was totally unaware of her illness when I met her and I'm a health professional! One of my family was diagnosed at aged 20 and now at 51 remains in very good health. She is a determined woman who has faced her diagnosis head on and will not allow it to get the better of her.
Thirty plus years on, she remains fully functioning - her walking is slower and her hands a little weaker, but she has just adjusted her life accordingly.
The most important thing that you can practically do is to pace yourself and conserve your energy for those important things in life that you do. If you are physcially tired, you will find that it affects your symptoms. The MS society are very helpful so you might be able to get some support from there.

Best of luck

FossilSister · 16/07/2008 17:14

My boss and good friend's DH both have Parkinson's - both young. Think very much linked with depression as others have said. It's such early days, you are bound to be in shock.

Hang in there. Lots of research going on - may be more in States with a new president. George B was always against stem cell research.

Original poster
pralinegirl · 16/07/2008 17:27

Thanks so much all of you - just to know others at my age know people who have this and are coping, even if it seems awful now. It has taught me to appreciate what I have, all other worries, lines, grey hairs, etc, go out the window. Thing was I never really worried much about those things but give me an injury and I was murder to live with! So any limitation is not easy and you always worry about its effect on the DCs. Thinking positive helps but sometimes only kind words do and some hope - am encouraged about the medication as I'm not on any PD meds yet. Must admit not entirely hopeless - did book skiing holiday for next year - seize the day and all that!Hope teachers agree when I take him out of school for it!

OP posts:
Quiltingmama · 04/01/2010 14:42

Hi Praline just wondered how you got on? I have PD and just turned 40 and am pg with DC2 - its hard at times but isn't all life? Hope you are doing OK

teatotal · 04/01/2010 20:50

Hello Praline, There is a link to PD- google mold fungi parkinson's disease, it may be seen or hidden in the home or workplace also check out google images and youtube and sick building syndrome. Read Get Well Soon-Remove The Cause The Effect Will Astound You by United Authors. I sincerely hope this helps.

New posts on this thread. Refresh page