Waiting for neurology appointment


#1

Hi everyone,

I have been reading the forum for a few weeks now and it confirmed to me that I have Parkinsons.  The thought of which left me incredibly anxious and fearful of the future.  It all started about 12 months ago when I felt as if there were bands tied round my ankles.  I was still playing tennis, in fact I have played some kind of sport all my life.  Just put it down to getting old so I said goodbye to Madrid when I went for the Open last year. In December a twitch started on the index finger of my left hand and a week later there was twitching on my right hand which has continued.  I went to my GP who is spanish (and I speak spanish) who always listens to what I have to say.  He has referred me to a neurologist but I am waiting for an appointment.  Its fear of the future that worries me the most because I live alone and do not have a family support network. I took up the piano when I retired early and I love doing it but the twitching has made my playing poorer.  It now gives me the reason why my hands were shaking so much in the piano exams.  Thoughts of not being able to drive anymore fill me with horror.  Anyway, that's me so hola to everyone and I hope that this post does not read like gibberish.

Thanks

John


#2

Hi Rosewall, not gibberish at all, but very clear, very reasonable.

Most of us have been there - I remember just how despondent I was before plucking up the courage to go to the doctor. Most of us, too, I guess fear the future - but it's really really unpredicatble, so best not to waste time thinking about it. Concentrate instead on making your life now the best it can be.

If it is PD, then it may well be slow-moving: I've had symptoms such as you describe for at least four and half years, and yet I'm still driving, still holding down a job with insane hours (thanks to the drugs). And when things do move on, PD usually has the grace to give you fair warning so that you can plan your next steps (er, as it were). In short, everything to play for, both on the court and on the keyboard.

Let us know how you get on with the neuro.

semele

 


#3

Thanks Semele for your reply.  I must admit its all a bit bewildering at the moment.  Not having control of your body is a frightening thing but its nice to see what other people have to say so I dont focus too much on myself.

John


#4

Hi,
I put off going to the doctors for 3-4 years after symptoms started (tremor, decreasing dexterity, pins and needles ...) I've always done a good ostrich impression.  By the time I went, I pretty much knew what I was going to be told and sure enough, PD was at the top of a very short, shortlist on my first appointment. I also live alone and need to pay the mortgage and so on. Having been told what I'd been dreading hearing, I visualised having to give up work imminently (and all the unimaginable consequences of that) but two years down the line and I'm still working (great) and still working on pulling my head out of the sand (not so good). I can't imagine the future, so try not to think too much about it, but I guess I've learnt that while I can't predict how quickly this is going to progress, I can make the most of the present and enjoy doing what I can do right now, so that's my current approach. And even though there are some bleak days, there are many good days, even great days too. Who knows what's around the corner, but at the moment I'm working on living with Parkinson's - oh, and trying to be a little less ostrich. Do let us know how you get on.
K


#5

Hi John

Try not to worry too much; it doesn’t have to be all doom and gloom.

I started with a twitching left thumb over six years ago which spread to my left hand and leg.  I knew it was Parkinson’s.  After about a year, I began to feel quite ill and tired, which gave me no choice but to see the doctor.  I was given three months of tests to eliminate cancer before I saw the neurologist who diagnosed Parkinson’s. I came home and felt very low, thinking it was the end.

I was prescribed a gradually increasing dose of Mirapexin and, after a few weeks, I began to feel much better and the tremor all but disappeared.  Since then, I have added a low dose of Madopar and continue to feel well. Everyone is different with this condition but it’s crucially important to keep to the minimum dose that does the trick for you to avoid any side effects.

Semele and Jackson are right: carry on enjoying your life and, most importantly, keep active. There is much you can do to help yourself, like maintaining a healthy diet and exercising (not that I pay enough attention to either of those) but what I am trying to say is that it’s unlikely that your life will suddenly come to a juddering halt.  There’s much to enjoy, so get out there and enjoy it!

Good luck with the neuro appointment and please keep us posted.
 


#6

Thanks for your kind replies. I do feel very supported by you all and therefore don't feel so alone. I don't know yet when the appointment with the neurologist will be but will let you all know when I receive it. In case anyone is wondering why I chose the name Rosewall it's because I had a very good one handed backhand at tennis which always surprised any new opponent. Kenny Rosewall had a beautiful backhand so in homage to the great man I chose his name.


#7

Hi Rosewall. 

I was diagnosed with PD 15 years ago and was horrified at the time that I made myself worse. Over the years I have learnt to stay away from thinking about the future.   I'm better off keeping myself busy. Even at night when I can't sleep and thoughts keep coming in to my brain, I put my earphones on and listen to a novel on cd for a while.

When I was diagnosed, I didn't know how long I could carry on working but I've only just come to the stage where I have given my notice to retire at the end of March 2015.  I was always industrious at work and kept assuring my line manager that I was up to the job and, of course, needed the money, but it suddenly came to me that I was mad to carry on when I don't know how long I am going to feel well enough to do things and my time is valuable to see my kids and my grandchildren, go out with my husband, cook chicken soup etc etc..   I know some people from Tai Chi who are on their own but they still feel that they want to do things before it comes a time that they can't so easily. 

Living for the moment and having at least one laugh a day might sound a bit pompous but I still get my bad times when I can't move one foot in front of the other or even get into bed.

Hope you can soon feel a little calmer. 

With best wishes to you

Casie

 


#8

Thanks Casie,

i feel a little calmer today and also got the neurology appointment for 23 Feb so not too long to wait.  It was a choose and book option so I chose the week after I go to the Royal Opera House to see Bryn Terfel in Flying Dutchman. That should set me in good spirits for the neurology appt.

John


#9

Hi Rosewall,

You are in the right place for advice, A this website is checked & double checked by a neurologist so we know the info is correct. 

Don't worry and cause yourself stress that is the worst you can do as it can set off your tremors.

you need to start grieving because life will carry on but not in the same way, pre PD normal life, post PD you will need meds and your most proabley be to and from from the GP & to  the hospital but thats good co's it means they are keeping an eye on you and how your PD progresses. I don't mean to cause you concern this is how it is for me. Learning about PD can give you back some control the more you learn the more you can help yourself. We are all still lovable even thought we have PD & we still just want to enjoy our life's as best we can, its the stupid public who has not got a clue. I am 49 dx in june 2013 I've been called a liar & fraud because I don't look like a typical PD suffer, they make me so annoyed, I could forget I'm a lady sometimes. I still just want to do what I always havelike  riding the motobike across Route 66 having a drink down the local, sunbathing and suchlike. This condition will NOT stop me I am fighting it to the point I have started calling it the bitch. It;s my way off copping and for me it works it don't have to be all doom & gloom so pick up your racket and start fighting for yourself now.

And above all don't let this bitch win!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hope your appointment goes ok best of luck let me know how you get on.

My Kindest Regards BB 

 


#10

Good luck with your appointment. I was diagnosed almost 3years ago and am better than I thought I would be. Only began taking medication 6months ago. Keep positive and enjoy life no one knows what is round the corner.


#11

Thank you BBand Lizzy

I gave up playing tennis a few weeks ago.  The trouble was that for some unknown reason (then) I could not throw the ball up with my left hand to serve.  It went all over the place and was quite frustrating.  I also dont want my level of tennis to get poorer and poorer.  I was always well known for how hard i hit the ball and was always on balance for my shots.  Whilst it is sad to think I will never play at that standard again I would rather hang up my racquet now and remember my famous top spin backhand.  I have loads of other interests to keep me occupied.  I like watching tennis and playing the piano.  I also will do some more work on my spanish.  It is at a high level already but I can always learn something new.  I recently installed a satellite to watch spanish programmes from Spain so that is an additional interest.  Anyone who wants to know how to say something in spanish just give me a shout. I think its the not knowing how this disease will progress which fills me with such anxiety.  The stiffness in my ankles and toes is just the start together with the finger twitching which horrifies me at the moment.  I have always been a sportsman and dont think I would ever get used to being an invalid but thanks for all your replies.  They do give me encouragement.


#12

Hi rosewell,

good to hear from you getting to grips with spanish is a fab idea we have to keep our brain as active as possible. I'm afraid the stiffness you are getting is quite normal you can however ask to be refered to a neurology physo they can help with that sort of problem BUT you must make sure they are a neuro physo because a general physo is not trainned to help people with neurological problems. You don't need any thing else causing you problem on top of PD.

Keep up fighting and I'm please my reply is giving you encouragement to help you along our journey.

 

BB xx

 


#13

Hello BB

Having a bit of a down day here with fingers of both hands twitching so it has made piano practice a bit difficult. I have a lesson tomorrow and my teacher knows about the problem. I suppose the bad day has been due to thinking about the future without any close family support. Still the Australian open starts tomorrow and whilst I am not currently playing tennis I will enjoy watching it.

john


#14

Hi John, sorry to hear your having a down day, when you see your neuro he should offer you medications we cant control the need to twitch so what the meds provided is sympton relief, there is no drug that can stop this for good,

So there will be a period of time where they will be trying to find the correct dosage for you, I am on the old fashion L-Dopa 6 times 62.5 mg per day. I was originaly on just 3 but I have put my name well in the frame for a clinical trial in London. This I found on the MJ Fox trial finder website it's a minor risk but I feel if I can get rid of this PD then I have got to go for it. There are more on there why don't you take a look you never know one just might grab you.

Best wishes BB x


#15

Thanks BB 

Have had a look at the site but until I get the definite diagnosis I can't put my name down.  I presume that most trials in this country will be in the major towns and the nearest one to me is leeds.  I read with interest how Parkinsons only affect one side to begin with so I am thinking that because both of my hands twitch I have already gone through stage one. I will just have to be patient and wait for the 23 February.


#16

Hi John,

Stage one is where it just starts and you know something is not right because it feels odd.

I would guess you are at stage two this is where you would normally get your dx mine was done at that point at LIncoln County so if leeds is your nearest town you could ask to be referred to Lincoln under Prof Sharma he is one of the best in the field of Parkinsons. He is good with keeping a regular check up on his paitents some Dr's are appulling  I have heard a lot of horror stories from all sorts of people with PD. I count myself lucky to be living in lincoln. PD can effect your whole body at any stage so please dont stress yourself out because it will make your symptons worse. You need to go to your appointment with a clear head because the dx can hit like a thunderbolt if you are not prepared for it trust me I know it hit the crap out of me, and I dont want the samething to happen to you.

Stay calm and take care mate it will help when the meds start kicking in.

 

BB x


#17

Hi BB and John.

I notice you mention research studies and trials. There are studies and trials based in several places around the country. The Fox Trial Finder is one way of finding them but there is also a list of studies on this website at http://www.parkinsons.org.uk/content/take-part-parkinsons-research-list-uk-studies 

Taking part in research is a great way of helping to fight the condition and keeping a positive attitude

I hope that helps

Elegant Fowl


#18

Just diagnosed and prescribed co beneldopa having second thoughts on benefits of medication versus where I am now any thoughts out there?


#19

I just made a post which disappeared so I will try again.  What sort of things did they ask you to do when you were diagnosed Grimmo?  You seem to have been a sportsman just like me so I also wondered what symptoms you were showing before diagnosis.

John


#20

Hi gimmo,

the meds are there to control your symptoms if you don't take your meds you might be ok for a while BUT eventually your symptoms will get worse.

Sorry to be the barer of bad tidings.

BB.