Diagnosed yesterday

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21

Thanks to Suberry, Treehugger, Marianne and Spitz for your really interesting and helpful posts.  

Sorry for the late reply a bit of a crazy week.  I was interested in the posts from everyone including those living in Devon/C'wall, as I was diagnosed at the RD&E by Neurologist and only given the option of a CT scan to rule out a brain tumour, which he didn't think was necessary as he was sure I had PD after only a few minutes of tests (very like you Marianne).  He was very nice, but not the senior Consultant and he didn't really explain anything even though we asked some questions, instead he gave us a leaflet and just sent me away with a prescription for Madopar 125mg (x3 daily).  

My GP tells me that I have had a Clinical Diagnoses and that she would still like me to have some further scans, although it seems clear they may, or may not prove much.  Interestingly the Madopar seems to be kicking in a bit more now as my tremor is not quite as bad (although not gone) and my shoulder and arm are not quite as tight, tense, stiff and aching, although it is not back to normal it is a little more relaxed, but mainly I am thankful I have had no real side effects.  

I think that it is very difficult to absorb the news when you are told you have PD, especially after only a few short tests; as you guys know, it's a very strange and distressing feeling, particularly as I was told I had 15 years... I am not entirely sure what that means, but clearly it is still fairly early days for me too.

I have told all my close family now and they have all been wonderful, plus I am lucky to have a loving and supportive hubby, but this makes we feel very sorry for those who are single parents or with no partner to share all this with.  I really hope they have great family and friends to support them, but it's so nice that we have this forum to meet and chat with other who really do understand what it's like to live with PD and where give each other some tips and advice and discuss news on the latest research etc.

As for my job prospects, well I want to continue working for as long as possible, but first I want to see what difference the L-dopa drugs make (if any) before I talk to my bosses.  I may be able to change my role slightly. But I was advised to give it a month on the drugs to see how I get on.  Currently, I'm off work recovering from some major surgery on one of my legs after a bad fall last year, so finding out I have PD may explain why I was not so steady on my pins.

Take care everyone and thanks again for sharing your experiences.  It's reassuring to know that mine are not so different and that you have all coped so well under such difficult circumstances, you are all - Rock Stars!  Nice to meet those from Devon and Cornwall too, perhaps we'll end up chatting at the same clinic one day. Meanwhile it will be great to hear who you all get on and what helps and what doesn't?!

Twist x

22

Hi Twist,

To respond your question about passing PD on to your children - I think that only 5% of those who have PD  inherited it - so unless there is a family history already of PD, I don't think you can pass it on to your children.

My mother had PD - but to my knowledge there are no other's in her family who had it. Her parents died in their 90's of heart conditions and old age - no PD. So I believe that I will not inherit PD.

Research being done has shown that PD is linked to particular genes having mutated...(or whatever the terminology is!) Sometimes that is by the inherited method...but 95% of people develop PD for reasons not understood yet, but they haven't inherited it.

There is a lot of information on the PUK website, and the helpline is a really helpful source of support and information. Every PwP is on their own individual pathway - with varying symptoms and a wide range of differing medications which just makes the disease harder to understand and get to grips with!

Hope you are beginning  to get some benefit from your medication

Take care

Keld

 

23

Hi Twist,,

When I asked what the prognosis was at my dx.six years ago at the age of 69years   the neuro said "10-15"years.  Later I realised I didn't really understand what he meant and at a later appointment he clarified this to mean 10 - 15 years when they would be able control  the symptoms.  This at a time when exercise was scarcely considered by the "experts"..   as impacting on symptoms.  Too simple for the brainbox neurologists..  That you will function much better with exercise is pretty well accepted if not exactly promoted

enough.      

24

Hi Keld

Thanks so much for the information it's really helpful and quite reassuring too.  I am adopted so have no clue about my birth family or medical history; therefore my children's family and medical history mostly starts with me now... hopefully I will be the family anomaly.

Gradually reading through the PUK website and really helpful videos from a PUK conference with medical experts sharing their knowledge and research.

Take care

Twist

 

 

25

Twist,

I went to a lecture on Wednesday 25/11/15 about 'Genetics and PD'....it was filmed, but I can't quite believe that it is already on the website! So look out for it!! at the lecture they just told us it was being filmed - but not when/where it would be available to view.....

Which conference did you watch a video of?

Glad what I said helped,

Keep smiling!

Keld

26

Hi Eileenpatricia

Thanks so much for your interesting comment, I think that you are right about the timing (10-15 years) I was given by the Neurologist, what you say does sound right, I think it was about the effectiveness of the medication; I also talked it over with my hubby and he seems to think that is what he meant too.  I think that we will have a lot more questions at my next appointment, as I guess we will feel less shocked and panicked, and more knowledgeable thanks to the PUK site and this helpful Forum.  I'll think I will take in a list of prepared questions next appointment. 

I have certainly had a lot of advice regarding the benefits of keeping as fit and as mobile possible; unfortunately, I am currently recovering from surgery on my left leg, ankle and foot after a bad accident almost two years ago, this surgery is vital to get me walking again; it is a slow recovery, but I am already noticing that I am in a lot less pain and that my foot is in a much better position for standing and walking now; it is wonderful to be able to stand and walk around a bit (I have a limp and some impressive scares!); but I am walking a little better and have started exercising in water and swimming again with the Pulse Scheme through my Physio; unfortunately, I don't think I'll ever walk normally again, as just too much damage (plus I just can't stand up or walk for long yet), but with luck and lot of hard work, plus time, my leg may improve a little more, I do hope so.  

It does worry me now that I find I have PD and learn how important walking and exercise is for PD.  I'm sure that I am not alone in having other medical issues to deal with, as well as PD; life is certainly a challenge these days, but I agree that it is important that regular exercise is at top of my agenda, as I am sure that it will not only help get me more mobile again but also with the PD and quality of life.

Best wishes

Twist  :-)  
  

27

Hi Keld

That's great news as these lectures are all so informative and interesting - I will def look out for the Nov 2015 lecture you attended!

I think that mostly the lectures I have seen are from a PUK conference (2014, I think?); they talk about the Blood/Brain Barrier, a lot of research in Oxford and Oxfordshire and collaboration with Sweden etc,.?  Really good stuff. 

Twist  :-)