Hi all my name is Adam and two weeks ago I was diagnosed with parkin gene. From what I have read this is a juvenile variant of Parkinson's disease but to be honest I'm really not sure.
I have always had shaky hannds since I was almost 13 years old and I have always been rather clumsy my ankles giving waPy and having a tendency to trip. I have also always had annoyances when eatin cereal or soup, with my hands tending to shake when they get close to my mouth. However in the last four years it has got progressively worse.
I have found it harder and harder to pick my feet up, rotate my ankles when I'm walking, the end result being as I walk I am walking on my toes and can't put my heel down first. The result is tripping up quite a lot and having several rather large falls. The worst of which happened about a month ago I fell over. whoops! My clothes ripped, I hurt my knees and lacerated my wrists. As a result of complications I was then hospitalised. I made a GP appointment to speak to my GP with a view to finding out why I trip over, the referral to a neurologist suggested perhaps it was Parkinson's disease!
You could have knocked me down with a feather. But to be honest, they days knocking me over is easy. I'm only 33 and apparently have been showing parkinson like symptoms since I was 13. The neurologist sent me for an MRI scan and a DaT Scan. The MRI scan result showed that my brain and spine and cord were perfectly normal. However the DaT Scan came back as abnormal. I was told by the nerologist that I have abnormal function in both of my dopamine producing glands.
I was told by the neurologist that I most likely have Parkin gene which apparently is a genetic variant of Parkinson's disease. Apparently this variant responds very well to treatment, which is good to hear. But it doesn't change the fact that I have just been told I have a chronic disease (Parkinson's) and will have to be on medication for the rest of my life. I know nothing about future prognosis, if it's going to get worse, if so how worse, can it been controlled, what's the worst case....... And I'm 33 and have had this for a minimum of 4 years! It's just so much to absorb.
I have now been placed on a course of medication which I'm told will have to continue for the rest of my life. I to take domperidone twice a day for anti sickness (though this is only for 1 week) and the main treatment is ropinirole. I have been started off at 2 mg for 1 week, 4 mg for the second week and see my GP on Tuesday. But have been told that the dosage must rapidly ramp upto at least 12 mg and may/will have to be tweaked over the years.
I'm just feeling completely overwhelmed. I feel much too young to have to be going through this and very uncertain of what the future holds. The consultant would not be drawn into a conversation about the future and I really can't find enough information on the Internet to tell me or prepare me for what the future holds.
I guess I was hoping that by coming on this forum i might find other people I could speak to who know what it's like to be going through this at such an early age and maybe have some advice. My parents try to be supportive but at the end of the day they think they know me and don't. My wife thinks (or at least acts like) now I'm being treated we should just forget it move along. She can't understand that for me everything has changed. And although positivity is good, her acting like I am being silly or pessimist to feel this way isn't helping.
Does anyone have any advise on what I should do or be doing?
Thanks for your time and sorry if this seems a bit weepy.
Adam
Hello SM (if I may call you that - typing is not so easy for me at the moment) and welcome.
Mutations in the Parkin gene have (relatively) recently been identified with early onset pd. This diagnosis is not based upon clinical signs at examination, and as far as I know a DaT scan will show evidence of lack of dopamine producing ability , but not the reasons why.
Do you know of any history of pd within your family?
I should imagine that your consultants reluctance to predict the future course of your condition is that s/he simply cannot.
The good news (I hope ) for you is that pd resulting from Parkin gene mutation shows a much slower progression of symptoms and a good response to medication.
As to what you should or should not be doing - many people with pd (arising from whaever cause) find that exercise, to the level of your ability, resting when necessary, dietary considerations, drinking plenty of fluid . Goodness me, I think that I may be talking about following as healthy as lifestyle as you are able. And, dare I say it ? A positive attitude. It may not cure you , but it will make life easier for you and those around you.
I believe that there are Young Onset pd Groups. Perhaps joining one may provide you with some support?
One last thing - when taking Ropinerole, it is best to take it with or after food. Not necessarily a full meal - just a couple of crackers will suffice. It helps with any nausea that you may feel.
I wish you all the best
AB
Mutations in the Parkin gene have (relatively) recently been identified with early onset pd. This diagnosis is not based upon clinical signs at examination, and as far as I know a DaT scan will show evidence of lack of dopamine producing ability , but not the reasons why.
Do you know of any history of pd within your family?
I should imagine that your consultants reluctance to predict the future course of your condition is that s/he simply cannot.
The good news (I hope ) for you is that pd resulting from Parkin gene mutation shows a much slower progression of symptoms and a good response to medication.
As to what you should or should not be doing - many people with pd (arising from whaever cause) find that exercise, to the level of your ability, resting when necessary, dietary considerations, drinking plenty of fluid . Goodness me, I think that I may be talking about following as healthy as lifestyle as you are able. And, dare I say it ? A positive attitude. It may not cure you , but it will make life easier for you and those around you.
I believe that there are Young Onset pd Groups. Perhaps joining one may provide you with some support?
One last thing - when taking Ropinerole, it is best to take it with or after food. Not necessarily a full meal - just a couple of crackers will suffice. It helps with any nausea that you may feel.
I wish you all the best
AB
AB,
Thanks for your reply. At the moment my symptoms are limited to making everyday easy tasks awkward. Other people notice it as hesitance and a weird gated walk (and sometimes a tendency to vibrate).
I work in IT on a computer all day so if my hands got too bad that really would be reason to panic.
Do you have any details about 'early onset' groups?
Also I see people refer to PD but what is the terminology for what I have?
Thanks,
A.
Thanks for your reply. At the moment my symptoms are limited to making everyday easy tasks awkward. Other people notice it as hesitance and a weird gated walk (and sometimes a tendency to vibrate).
I work in IT on a computer all day so if my hands got too bad that really would be reason to panic.
Do you have any details about 'early onset' groups?
Also I see people refer to PD but what is the terminology for what I have?
Thanks,
A.
hi SM
great name but tricky! Agree with everything AB says. I was diagnosed at 48 but there are quite a few people of the same age as yourself and I am sure they will be around. I work in IT. IT covers a lot of roles (don't work at natwest by any chance - would love to know how that one happened) but if typing got too difficult there are options. My biggest problem is accidental mouse clicks but that can be minimised too.
Try not too look too far ahead - you probably are in the slow lane and there are lots of new treatments being developed that i am sure you will be investigating for yourself.
Your partner's attitude is by far the best- and in a few months when you are over the shock things will look better.
Ropinerole is a dopamine agonist (DA) and is associated with obsessive behaviour (OCD) which hopefully your doctor has pointed out. Not a reason to not use them but something to be wary of when you are on the full dose.
cheers
great name but tricky! Agree with everything AB says. I was diagnosed at 48 but there are quite a few people of the same age as yourself and I am sure they will be around. I work in IT. IT covers a lot of roles (don't work at natwest by any chance - would love to know how that one happened) but if typing got too difficult there are options. My biggest problem is accidental mouse clicks but that can be minimised too.
Try not too look too far ahead - you probably are in the slow lane and there are lots of new treatments being developed that i am sure you will be investigating for yourself.
Your partner's attitude is by far the best- and in a few months when you are over the shock things will look better.
Ropinerole is a dopamine agonist (DA) and is associated with obsessive behaviour (OCD) which hopefully your doctor has pointed out. Not a reason to not use them but something to be wary of when you are on the full dose.
cheers
hi ya welcome to the forum,im ali,ive been dx for 11 half years,and im 43 years old.i agree with ab and turnip,as you can see there is good aadvice here and nice friends to meet,pd can be strange,everyone seems to act towards it in different ways,not only the suffer,the family and friends also towards them.i have found if the suffer accepts it at first,the family does not,and alot of questions to ask.and other way round.but im sure your aware of this.with me self 11 half years ago,i personally could not understand wot goin on,i did not no wot pd was at all,i had been checked for m.s cus me nan had it,and had to get 2nd opion with pd cus i would not belive i had pd.my family was suportive,but have ill health so hard on them selfs to.through my 11 years ive had good and bad,as we all get in life i guess.but the key to pd,is to try and keep head above water if you can ,take on board wot folk say to you,and try and stick togeather,this forum is gettin stronger and stronger latley,and when new suffers have joined they are welcomed with open arms,and tryed to give as much surport as we can.if there is any questions you would like to no at all,apart from wot has been answered above,please do put them down,were all in the same boat as ive said,even im learnin still new things,cus resurch is gettin more advanced now,so pd cure is always gettin closer towards us
Hi SM (sorry i can't spell your name)
Wow you have really gone through a lot, from the age of 13 you must have been so worried!
I sort of know how you feel - i had movement problems for a few years and after undergoing lots of tests was dx nearly three years ago with pd. I can still remember that day vividly with a sort of out of body feeling, a mix of is it me they talking about, how am I going to tell my children, my life is changed forever & relief at having a name for what was wrong with me.
Three years down the line I guess I'm lucky. I suffer slowness, stiffness and have problems with fine hand movement i.e typing, writing, buttons even cooking. My week side is my left side and tend to drag my left leg but only have a slight tremor. My biggest problem is nerve pain and anxiety. On the whole life is still good and as others have said just take everyday as it comes, try not to think about the future. You are still probably in shock, I couldn't accept that I would be on meds for the rest of my life either and still hate taking them but it just has to be and you do get used to it.
I hope you keep using the forum you will find lots of help and find people who you can talk to. Sometimes i feel like i'm on my own especially as my symptoms are not as advanced as some but then i count my self lucky (for now). The only advice i can give from my point of view is - don't read too much about pd - of course knowledge is a must but no one person is the same and if you dwell on the negative you can really depress yourself!
Get on with living!
Big C
Wow you have really gone through a lot, from the age of 13 you must have been so worried!
I sort of know how you feel - i had movement problems for a few years and after undergoing lots of tests was dx nearly three years ago with pd. I can still remember that day vividly with a sort of out of body feeling, a mix of is it me they talking about, how am I going to tell my children, my life is changed forever & relief at having a name for what was wrong with me.
Three years down the line I guess I'm lucky. I suffer slowness, stiffness and have problems with fine hand movement i.e typing, writing, buttons even cooking. My week side is my left side and tend to drag my left leg but only have a slight tremor. My biggest problem is nerve pain and anxiety. On the whole life is still good and as others have said just take everyday as it comes, try not to think about the future. You are still probably in shock, I couldn't accept that I would be on meds for the rest of my life either and still hate taking them but it just has to be and you do get used to it.
I hope you keep using the forum you will find lots of help and find people who you can talk to. Sometimes i feel like i'm on my own especially as my symptoms are not as advanced as some but then i count my self lucky (for now). The only advice i can give from my point of view is - don't read too much about pd - of course knowledge is a must but no one person is the same and if you dwell on the negative you can really depress yourself!
Get on with living!
Big C
turnip, Ali and Big C,
Firstly my name, schadenfreude is German, mei is 'me', basically I'm taking the piss out of myself. Just call me Adam :-)
Thanks for your response and kind words. On the whole I'd say that I am quite positive and think about the whole thing logically (I'm a database administrator) so tend to strip everything down to it's base components. But then when I'm not thinking about it, the emotional side takes over and...... Well, sure you know about that.
Big C, I would say that my symptoms are very much like yours. My week side is my right, and I tend to drag my right foot. I also have difficulty with fine hand movements (and typing this on a iPad, the backspace is my main key). I have mild tremor but don't have any pain. Plenty of anxiety but whether that's thanks to pd or the frustration of not being able to move the way I want I don't know.
It's good to know that there are people to talk to. My wife has suggested a local group which meets every three weeks. I think I will go but at the same time that kinda makes it real. Not sure.
One more question if I could? Ropinirole, can it be taken in the evening? The consultant didn't say owt, but the pharmisist said to take it first thing AM. Thing is, evening would be good as tiredness is (so far) my main side effect and taking in the evening would avoid that (cause I'd be in bed).
Thanks all again.
Adam
Firstly my name, schadenfreude is German, mei is 'me', basically I'm taking the piss out of myself. Just call me Adam :-)
Thanks for your response and kind words. On the whole I'd say that I am quite positive and think about the whole thing logically (I'm a database administrator) so tend to strip everything down to it's base components. But then when I'm not thinking about it, the emotional side takes over and...... Well, sure you know about that.
Big C, I would say that my symptoms are very much like yours. My week side is my right, and I tend to drag my right foot. I also have difficulty with fine hand movements (and typing this on a iPad, the backspace is my main key). I have mild tremor but don't have any pain. Plenty of anxiety but whether that's thanks to pd or the frustration of not being able to move the way I want I don't know.
It's good to know that there are people to talk to. My wife has suggested a local group which meets every three weeks. I think I will go but at the same time that kinda makes it real. Not sure.
One more question if I could? Ropinirole, can it be taken in the evening? The consultant didn't say owt, but the pharmisist said to take it first thing AM. Thing is, evening would be good as tiredness is (so far) my main side effect and taking in the evening would avoid that (cause I'd be in bed).
Thanks all again.
Adam
Hi love your name, like you I'm on Requip XL and I take it in the evening about 7.30 must say I now sleep much better. I was diagnosed in April 2012 and my symptoms are much the same as yourself and BigC. I am 51, work full time as a Senior Charge Nurse but PD is new to me, never really nursed many patients with the disease.
I did initially take my Requip XL in the morning but quickly realised I would need to change the time, asked PD nurse for advice and she recommended gradually moving it forward by an hour until I got at a time that suited me. However I have noticed that the effect doesn't last the full 24hours, but taking at 7.30 works for me.
I have gone to a local PD meeting which was an insight for both myself and husband meetings stopped now until after the summer but we will be going back. I know what you mean though makes it real, hope this has been of some help.
Take care Adam
Sorry forgot to welcome you to the forum
Helen
I did initially take my Requip XL in the morning but quickly realised I would need to change the time, asked PD nurse for advice and she recommended gradually moving it forward by an hour until I got at a time that suited me. However I have noticed that the effect doesn't last the full 24hours, but taking at 7.30 works for me.
I have gone to a local PD meeting which was an insight for both myself and husband meetings stopped now until after the summer but we will be going back. I know what you mean though makes it real, hope this has been of some help.
Take care Adam
Sorry forgot to welcome you to the forum
Helen
Hi I can understand your teariness at dx. I cried for weeks for my youngest daughter,my family and my husband but I didnt cry for myself til much later,Then I began to grieve for the loss off my former life..I told myself "They" had misdiagnosed and I would not believe it. After 6 years of different symptoms and misdiagnosis they finally told me 2 years ago it was PD. I am JUST coming to terms with it. The people/friends on this site have been a great help. I hope you get the same comfort. Do your grieving then you will move on, as for your wife,show her this forum. my husband is more understanding now.
best wishes neenag
best wishes neenag
Hi Adam i agree the backspace is my favourite key too (tablets are not pd friendly). Talking of tablets i also take Requip XL. I started on Requip 1mg three times a day but found i was so tired i would fall asleep at my desk (good job i'm married to the boss! I was put on 4mg once a day at breakfast but still felt sleepy, so after talking to my neuro i now take it at bed time. I would recommend moving it gradually as it took me a few days to adapt. Talk it through with your neuro first tho. Unfortunately i found work more & more stressful making my pd and anxiety worse, I'm lucky i work for my husband so now i work from home.
I think we forget how our partners are feeling living with a pwp, we tend to forget it affects them as much as us, my husband and grown up children are really good and treat me no different apart from having to help around the house more and coping with my mood swings (that could be an age thing!)
We have been advised not to join any society's as it may not be beneficial at the moment (maybe that's wrong) . I was dx at 49 and thought i was young but now i realise more & more people are even younger like you.
I think its only natural to get upset and feel totally frustrated, i often have really good cry and shout WHY ME?! but you just have to get on with it and make the most of the good days!
Take care
Big C
I think we forget how our partners are feeling living with a pwp, we tend to forget it affects them as much as us, my husband and grown up children are really good and treat me no different apart from having to help around the house more and coping with my mood swings (that could be an age thing!)
We have been advised not to join any society's as it may not be beneficial at the moment (maybe that's wrong) . I was dx at 49 and thought i was young but now i realise more & more people are even younger like you.
I think its only natural to get upset and feel totally frustrated, i often have really good cry and shout WHY ME?! but you just have to get on with it and make the most of the good days!
Take care
Big C
Hi Schadenfreude-Mei and everyone else who's commented on this thread so far. If you're looking for a local support group to go along to, take a look at our local group finder at http://www.parkinsons.org.uk/localgroups
To make it easier to locate groups specifically focused at people of working age with Parkinson's, we have a list at http://bit.ly/LkgGYp
Our local groups are there to provide friendship and support to people affected by Parkinson's. They can vary quite a lot, however, in terms of size, the range of activities offered and also age range.
On each local group web page accessed through the links above there are contact details of a relevant member of our regional staff (there are often contact details for a volunteer in the group too). So it's a good idea to phone somebody up or email them first to get an idea of whether the group might be a suitable one for you.
Hope this helps.
To make it easier to locate groups specifically focused at people of working age with Parkinson's, we have a list at http://bit.ly/LkgGYp
Our local groups are there to provide friendship and support to people affected by Parkinson's. They can vary quite a lot, however, in terms of size, the range of activities offered and also age range.
On each local group web page accessed through the links above there are contact details of a relevant member of our regional staff (there are often contact details for a volunteer in the group too). So it's a good idea to phone somebody up or email them first to get an idea of whether the group might be a suitable one for you.
Hope this helps.
The doctors' unwillingness to tell me what to expect was hard for me to. I wanted to be able to plan for my future disability as that's how I cope. I am now learning to live with uncertainty. I am also learning to look after myself better; insisting on regular meals, enough rest, holidays etc and it helps a lot.
I went to one support group for 'younger' peole (I'm in my 50s) but it didn't work for me; I got freaked out seeing all the people in a later stage than me and there was a detailed talk about donating your brain to science when you die which I really couldn't handle, and I left early and sat in the car and cried my eyes out. I don't expect I'll go again. That was 5 years ago.But they work for some people; the room was full.
My neuro says if you have PD that progresses slowly it tends to continue to progress slowly, doesnt speed up. So that might be true for you. It has been for me.
I now try to be prepared for the worst but expect the best.
I went to one support group for 'younger' peole (I'm in my 50s) but it didn't work for me; I got freaked out seeing all the people in a later stage than me and there was a detailed talk about donating your brain to science when you die which I really couldn't handle, and I left early and sat in the car and cried my eyes out. I don't expect I'll go again. That was 5 years ago.But they work for some people; the room was full.
My neuro says if you have PD that progresses slowly it tends to continue to progress slowly, doesnt speed up. So that might be true for you. It has been for me.
I now try to be prepared for the worst but expect the best.
Hi Schadenfreud-Mei
Thanks for you email i sent you a reply but not sure it went? i'm using a new tablet and finding it a bit tricky!
Hope to speak to you soon
Big C
Thanks for you email i sent you a reply but not sure it went? i'm using a new tablet and finding it a bit tricky!
Hope to speak to you soon
Big C
Hi sm(Adam) you've Just going through what everyone else does.mywife,kids,mother don't know what I'm going through if people think your putting it on because sometimes your better than others.if you get a symptom then go on the net to see if it's related you can then rule it out.there is a lot to pd.pd does alter your life I was dx last nov but could have had it 20 years.enjoy the good days and do today what you planned in the future.ive just bought a static caravan and I'm enjoying while I can.there are 50 symptoms of pd so it can be confusing.we are all on here to help each other just ask someone will know the answer.twins99
Hey everyone, sorry I haven't replied for a few days, I've been off work this week supervising some building work we're having done.
Big C: got your email and will reply shortly.
My head is all over the place right now, it just took me 30 min to login here.... All that time I was using the wrong email address. Anyone would think I was pregnant.
I just wanted to say thanks t o everyone for your messages, it means a lot. Re groups I might go but as it was just pointed out, my pd is an irritant, frustrating at worst and to see everyone with such developed symptoms, might freak me out enough to.... Well not be happy.
I will start a new thread oon this if you think I should but does sleep under ropinerole xl ever reteurn to normal?
Thanks again..
A
Big C: got your email and will reply shortly.
My head is all over the place right now, it just took me 30 min to login here.... All that time I was using the wrong email address. Anyone would think I was pregnant.
I just wanted to say thanks t o everyone for your messages, it means a lot. Re groups I might go but as it was just pointed out, my pd is an irritant, frustrating at worst and to see everyone with such developed symptoms, might freak me out enough to.... Well not be happy.
I will start a new thread oon this if you think I should but does sleep under ropinerole xl ever reteurn to normal?
Thanks again..
A