Diagnosed yesterday


#1

Hi all

I'm 54 (female) and was diagnosed yesterday by a Neurologist in Devon, after several months of waiting for an appointment for left arm tremor and shoulder stiffness/pain.  I did lots of physical and coordination tests, which were upsetting (as I got terribly confused) and I clearly failed them all.  Interestingly, I was offered a scan but he didn't seem to think I really needed one in order to make a firm diagnoses of PD.  My symptoms and tremor are a lot more obvious than perhaps I realised, especially to an expert eye. But can anyone tell me if a scan vital for a diagnosis of PD - or not?  

Of course my hubby and I are both really sad and shocked as I am sure everyone is when they are first diagnosed. It feels rather like a time bomb has just gone off in my head/life and it's so frustrating not to know why, or how, or if any of my four adult children are at risk of inheriting PD from me.

So I have been given Madopar 50mg/12.5 (Levodopa+Benserzide) dispersible tablets, to slow down progress of the PD.  My Neurologist said that there is nothing he can do for the tremor/stiffness; however, I have noticed while reading various Forum posts that other people (also newly diagnosed) have been given different medications to mine - can anyone tell me what the differences are in the medications for PD are?

Anyway, I have to start taking 1 tablet, 3 times a day for one week and then double them to 2 tablets, 3 times a day for the future...

Thanks for a great PD Website, the Videos and the Forum chat, it's all really helpful information for this steep learning curve I'm now on. 

Best wishes to everyone - Twist


#2

Hi Twist,

Welcome to the forum. You'll find lots of friendly support here. However, if you would like some more advice about your symptoms and to talk through your medication with a specialist Parkinson's nurse, please do call our free Helpline on 0808 800 0303.We are open on Monday-Friday 9am-7pm and on Saturday 10am-2pm and can provide practical advice and information on support available to you. 

Best wishes,

Joanne 


#3

Hi Joanne

Thanks so much for the contact and useful information - it's very much appreciated.  I will certainly get in touch, as after the initial shock of receiving my diagnoses, I find I have many questions.

Thanks again

Twist  


#4

Hi twist 

there is also an excellent booklet you can download  from the PD website called drug treatments for Parkinson's which will give you info on all the drugs available and their advantages and disadvantages 

Personally not on any meds yet so can't comment further 

Welcome to the club x

Tom


#5

Hi Twist, 

It's a dreadful shock when you're first told you have PD. I remember the neurologist telling me before the Scan that it could be MS or PD.......I was so pleased it wasn't MS, (which shortens life expectancy), that I actually thanked him for saying I had PD.....how mad is that?!! I left the hospital with no other information, than my result. I have found that I have to battle and nag for any kind of support or resources available to me. I hope you have a better experience that I did.

I can honestly say it took me a year to get my head round everything and come to terms with the idea that this disease wasn't going to go away. No-one told me about this website and I found it by accident. It helps a lot to know that you can talk to somebody and express your thoughts without recriminations.

I hope you manage to stay stress free, as that makes the condition worse. Also, plenty of good sleep helps a lot. I wish you all the best and always remember there are loads of us out there to communicate with!


#6

Hi Tom

Thanks for the warm welcome and also for pointing me in the right direction re. the Drug Treatments for PD booklet.

I will def look into it as am keen to learn as much as possible so that I understand what the Neurologist is talking about. It seems I am in this for the long haul now, so will be useful to know what durgs are available in the UK and how they work etc.

Very helpful - many thanks

Twist 


#7

Hi Twist,

i totally understand how you're feeling. I was diagnosed in June of this year(in Cornwall) and even though I'd had my suspicions( and thought I was prepared) when the specialist gave me the diagnosis I was stunned to hear the words! Even now months later I still find myself pretty overwhelmed sometimes. I've opted to stay off medication for now as I'm concerned about the long term side effects of being on medication and the fact that it doesn't slow down the disease. Just recently I've been investigating taking nutritional supplements and improving my diet as there seems to be some evidence that this can help with symptoms. I think trying to keep positive is really important, even though it can be very hard sometimes!  I've only just joined the forum but it helps to know there are other people out there who understand how it feels and what it's like living with Parkinsons.  Be kind to yourself and give yourself time to deal with the news.

Su.   x

 


#8

Hi Twinks

Thanks so much for your lovely message and for sharing the story of your diagnosis - I know exactly what you mean, it is a very strange and serial thing sitting in the hospital and being told you have PD...  

It's very strange thinking that I am in this for the long haul and that there is no way out and that life will be come even more of a challenge as the disease progresses - very scary.  But like you I'm also so grateful I have time and am determined to live my life to the full, no matter what PD throws at me, although I know that this will be hard at times.

I am very grateful to meet you and others on this Forum knowing that you are all expert your own PD and can offer really helpful tips and advice.  I think that it will take time to get me head around it all and I have yet to tell my adult children or family and that is going to be tough, but I felt that my hubby and I needed time to fully absorb the news and to learn a bit more about PD before I drop the bomb shell on them, as I know they will all be full of questions.  

Your advice about staying as stress free as possible and sleeping well is also very helpful - I listen to audio books at night as I find it hard to sleep and they help distract my mind and eventually I drop off with Anton Lesser or Benedict Cumberbatch!

Twist 


#9

Hi Su

Thanks so much for the lovely message, I am interested in why you are not put on medication, as I wasn't given a choice, indeed I left the appointment with a rather soggy, tear stained prescription in my hands!  

I guess that possibly we are all diagnosed as different stages and therefore there are no rules for when to start on the meds, but I was told that L-dopa helps to slow down the progression of the disease?  It's frustrating that we (patients) are often told different slightly things; but I have heard that meds are not always necessary in the very early stages and if you can cope without then that's fantastic, plus a healthy diet and exercise seem to be vital for all PD patients to help keep these painful stiff muscles moving, also I have also been recommended massage is wonderful too and indeed any form of relaxation that makes you feel better. 

So far, as I've mentioned in a previous post, I haven't had any problems with taking Madopar, but I'm only on a really low starter dose until next week, so it's very early days for me yet, but so far it doesn't seem to be making any difference to my tremors as they are exactly the same (not better or worse) but perhaps once I go up to the full dose I might begin to notice a difference. 

Good luck Su with your health approach and positive attitude - I totally agree with you 

Twist x 

       


#10

Hi Twist,

Another thing that occurs to me, is the importance of your hubby understanding the disease too. I have found that people's attitude towards me have changed, since knowing I have PD. In my husband's case, he started taking over when he could see me struggling to do things and holding my arm when crossing the road. What's wrong with that, you may say?......it somehow made me feel as if I was incapable and that my every movement was being watched! I CAN do things for myself, just a bit slower. He has learnt to give me time to accomplish tasks and only helps me when I ask him to. Certain friends also ask me if I can manage, when I'm putting on my jacket, or getting up out of a chair, or walking round the shops. I know they mean well, but it's just a constant reminder that I have this wretched disease. Other friends are great and treat me as normal. 

You may find this happens to you, when you tell people. You're right to give yourself time to absorb everything with your hubby, before telling your family. My son (28yrs. at the time), wanted to know if it was hereditary? As I understand it, he is 5% likely to get PD. My father (92yrs.) still doesn't know and I have no intention of telling him, at his age. Fortunately I don't have tremors and can manage to conceal it from him.

If there is a Parkinson's Support worker in your area, I strongly recommend that you ask her to give you a 'home visit'. We had one and come to our house and she was so helpful and left us some booklets on coping with PD and what to expect as the disease progresses.

Good luck for the future and I hope you can stay positive.   x


#11

Hi Twist

I am 51 (male) and was dg 2 years ago. I started on the same meds as you and they had no effect until I started taking them 30 minutes before a meal, I think one of the Parkinsons UK booklets suggests this. Sadly none of the current meds slow down PD, they only act to control symptoms. You are right about exercise, and walking is one of the best (and cheapest) I walk miles every week, and I believe it helps to keep PD patients mobile for a lot longer and my even slow down the progression. 

All the best

Treehugger


#12

Hi Treehugger

Thanks so much for the information and clarification about the meds not slowing down PD, but are just to control symptoms.  I must have totally misunderstood what was said, so its good to get the correct advice, as it was overwhelming trying to take in all the information (plus understanding it) during that first hospital appointment.   

It is also great to know that walking helps so much and indeed may even help slow the progression of the disease.  Unfortunately, I am currently recovering from leg, ankle and foot surgery after slipping down the stairs almost two years ago and breaking both ankles (one very badly) this bad left foot then got stuck in a dystonia position (incredibly painful) and so I've had surgery to cut and lengthened all the foot tendons including the Achillies and to fix the foot in the correct walking position again.

So medically speaking, everything has been focused on fixing my ankle/foot so that I could walk again; no-one linked the foot/dystonia problems to PD, even though I have been mentioning my strange tremor and balance problems to my GP and orthopaedic surgeons for months and months, before a different GP saw me and took it seriously and sent me to the Neurology appointment.  From what you say it sounds like I really need to get this leg working again and as soon as possible.  

I start Physio next week and after what you have said about the importance of walking, you have given me even more incentive to get walking again!  Interestingly the tremor and broken ankle that developed the foot dystonia are both on the same side (the left).  Can you tell me (if you know) does the tremor stay on one side of the body, or is it likely that eventually it will spread to the other side too?

Twist


#13

 

Hello Twinks, I can relate to what you were saying about how people changed towards you especially your husband, I had exactly the same reaction from my husband!

In fact it got to the stage that I had to have a little chat with him and to explain how I felt,I still get the feeling sometimes that he thinks I need help and he thinks I can't handle things and that he wants to 'take  over'

If I was that way inclined I think I'd let him, I would have a life of riley!!


#14

Hi Twinks

Thanks so much for your post - I can't tell you how much it has helped me (and made me smile too) it's a very timely observation and very useful advice.  Indeed I already feel that my hubby is watching me closely as he keeps asking if the meds are working yet, I've only been on a half dose for three days - bless him!

I am beginning to think that it will be good for my hubby to do some quiet research on his own, as at the moment I have been leading on this (not a surprise really) but I feel like I am rather bombarding and overwhelming my hubby with information.  He is being very patient about this as of course it is only a few days since diagnoses so we are bound to be PD focused right now as we talk it all through and try and work out how to handle it, but at some point (once we have told our family) we will have other things to focus on and that will be great!  I may have PD but nothing else in life has changed.  

So like you I am keen to focus on the positive and everyone else will just have to slow down to keep pace with me!  I will get on with my life just like I was last week, before I knew I had PD.  It's funny to be watched closely by my concerned hubby this week - but how lucky to be loved!

Take care - Twist x  

 

   


#15

Hi Twist,

Medication options were discussed with me at my diagnosis mainly because I'd worked in the pharmaceutical industry for many years & asked a lot of questions about whether they would cure or slow down Parkinsons and also what were the side effects.  I came away from that appt. understanding that after taking the meds that are used now to help with symptoms, for a time, most people need higher doses or more meds added & then the side effects start to kick in.  I went away from that appt needing time to absorb things & to decide how to handle the news.  Apart from my husband I didn't tell anyone else for weeks. I only told my two sons & family & friends as time went on but am now finding I am able to talk about it if I need to without getting upset......that definitely took me time! I saw my local Parkinsons Nurse after this and she was v helpful but again thought medication was the way to go.  I talked to my GP and she said it was my decision about meds but I did leave the surgery with them but also with the agreement that I would decide if & when I needed them. So far am coping with the tremor in my right arm & leg but find the tiredness & disturbed sleeping can be difficult especially on days I work. The one sure fire thing about Parkinsons is that everybody seems to experience it differently and I think we need to be treated by health care professionals as 'individuals' with individual needs not just some with Parkinsons.  Take whatever time you need to make your choices when it comes to whatever's right for you whilst listening to the advice given by specialists. Whilst like you I am v much at the start of living with Parkinsons, anything I can do to help you're more than welcome to message me. Take care Su.  xx


#16

Hi Su

Thanks so much for sharing your experiences with me, it is so interesting to learn what other people have experienced and indeed my main feeling is that my hubby and I came away from that first appointment and diagnoses with the Neurologist having hardy asked any questions or the right questions!  

However, I am seeing him again in a month or so and will go armed with whole list of questions. Personally I prefer to know the cold hard facts, the no-frills version, but I am also so grateful for just how positive you and everyone else has been, it would be so easy to get depressed about having this relentless disease, and I now also fully appreciate that all of us with PD travel on our own individual and challenging paths. 

I am particularly interested in the drugs issues you have mentioned and think that you and others who are choosing not to take the drugs immediately after diagnoses make a very interesting point.  I will definitely be discussing this with my Neurologist. But as you mention, we all manifest our symptoms at different times and in slightly different ways, I will be interested to hear his views on this; unfotunately I have found I find that I am really struggling to type fast and accurately now, I have slowed right down and make tons of typos as my fingers and hands simply just can't coordinate properly anymore.  I have noticed this gradually happening over the past year or so and was thinking it was RSI, so have had to develop my own way of coping at work (unfortunately fast, accurate IT work is vital to my job), so my ability to do my job is another issue I am going to have to face up to sooner or later.

I completely agree about needing time to fully absorb the diagnoses so you can tell people without breaking down - I am up and down emotionally just now, one minute I think I am OK, but then I'll read something or think about my children and the eyes start to well up.  I don't want to scare them so my main message will be a very positive one!  As life will carry on, and no matter how hard the challenge I will continue to enjoy every moment.

Thanks for your kind words Su and offer to message you. As I learn to understand and accept what is and has been happening to me, it is comforting to know there are others out there who understand completely from their own experiences - although of course I wish that non of us, or anyone else in the future, ever had to live with PD - perhaps one-day that will become a reality.

Take care - Twist           


#17

Hi Twist,

I understand your situation with work & using the computer as its one of my worries too.  I struggle to manipulate the mouse when using the computer & also make loads of mistakes. I started a new job a few weeks before my diagnosis & as I was on 6 months probation was worried I would lose my job. Fortunately so they have been really good saying they are v pleased with me & they will help as much as they can with whatever support I need but I am aware that I am slower than others doing similar work....time will tell I suppose as my 6 mths are up in a few weeks so am keeping everything crossed.  One of the things they have set up on my comp is the option to have 'yellow stickies' up in the corner of my screen so that when I'm having to take names,telephone numbers & messages down quickly over the phone I can put them on a stickie on the comp rather than write it.....my husband says my writing makes him think that a snail crawled across the page now! Lol. This has def helped & at home I use my ipad(lefthanded) which is easier.  If you've been with your employers a while they have a duty to help anyone with a disability carry out their job.  So I'll keep my fingers crossed for you!

Take Care

 

Su.   xx


#18

Hi Twist

I don't have a tremor, but I have read that symptoms that start on one side can eventually spread to the other, but you never really know when that will happen. Its good to learn as much as possible about PD and PUK is the best starting point.

But the best advice I can give is to live life to the full, try new things (i have just started watercolour painting) do things you enjoy (I have my own gardening business and can still do heavy work 8 years after my first symptoms) PD is definitely not the end but a new beginning, PD won't go away, so move forward with determination and joy in your heart. And when you can walk do it, but with your foot problem take it easy at first and get advice from your GP or physio.

all the best

Treehugger

 

 


#19

Hi Twist - this is my first post too!  - I'm a recently diagnosed  51 year old lady from  Devon too - I was diagnosed about 9 months ago after going to see a neurologist and thinking I had carpal tunnel or trapped nerve! So it was a massive shock being told  by a neurologist with zero empathy or bedside manner that I had PD, after a 10 minute examination . He gave me a prescription and sent me on my way with no information or support . I drove home from the hospital in floods of tears but then requested a different consultant who is lovely :) I have three children aged 13, 17 and 19 and like you I'm am worried about the implications on them as my grandfather had pd and my mum MND which although completely unrelated is a neurological condition too. I had a genetics appointment yesterday to discuss whether I wanted to take this further - it's hard to know if I want to do this or not really - I don't know what good it will be knowing if my  beloved kids are at an increased risk of getting it, particularly w​ith no cure in sight at the moment - I wonder if any other people on the forum have any thoughts about the pros and cons of having a DNA / genetic test ? 

I am beginning to come to terms with my Diagnosis though have not yet had the courage to seek out others with the same conditio​n or join a local group - I think if they are all a lot older and with a lot worse symptoms it might scare me too much! I don't like thinking about the future too much.at the moment but live for the day - my sympto​ms are pretty mild I think, tiredness and aching right arm and shoulder are what gives me most trouble/pain- stress makes everything ten times worse so I am trying to keep my life on an even keel - hard with teenagers though and no husband to support me but there are so many people worse off so trying to remain positive :) I'm  finding my Pilates class helps a lot too. I do hope you find the medication helps- sometimes different medications suit different people, so if yours appear not to suit you or help, there might be others that are better I expect I'm on 1 x rasagiline a day and 3 x 125mg of sinemet(carbidopa and levodopa) a day which I think is quite a low dose - mine do make me feel a bit nauseous but I can live with that as I do feel the benefit of them generally. hopefully you will be referred to a specialist Parkinsons nurse who can advise you on a number of things as I expect you will generally only see you consultant a couple of times a year . best wishes at this early stage


#20

To all who have added to this string of support...it's good to know you are out there, and also send collective note of empathy to Twist...I myself am a 51yr Male Geologist with one year now past since diagnosis; what I will say, Twist...is that I am from Exeter, and I was diagnosed without requirement of scan...and scan showed nothing anyway....I have only now, after a year...told all friends of diagnosis, as I didn't want people to put more emphasis on the casual words 'how are you, mate...'...now that all friends know, I find a whole range of changes in peoples characters when paths cross.. ...i also have not told work colleagues, but I do get comments regarding the shakes that I cant control in left arm/leg....lets keep smiling folk...have happy day   ...Will