I thought I would introduce myself even though I may eventually be thrown off this forum as a fake.
I am 68 and for about two years I have had a shake in my right arm that has gradually been getting worse. It sometimes also extends to my right leg. I never get the shake on my left side. I also have some other symptoms that could well be attributable to other causes such a slow urination, a poor sense of smell and absent-mindedness.
My shake gets much worse when I am tense - for example in social situations. I don’t always notice I am shaking until I spill my drink over someone’s clean floor which is embarrassing. The shake goes into overdrive if I watch something tense on TV. I notice that my right arm does not swing like my left arm when I am walking.
However it disappears if I am directing my hand to do something such as pour water from a kettle and when I am completely relaxed as when I am falling asleep.
What I don’t get are the other main symptoms of PD. I don’t think I have difficulty moving or slow movement. Nor do I feel depressed. So for this reason I may not have Parkinson’s.
But anyway I did have a telephone consultation with my doctor back in July and on the basis of the poor sense of smell and shake he has referred me to a neurologist and finally, lockdown permitting, the appointment has come through and I will be seeing him/her in a few days at the Royal Berks.
So my question is - what should I expect from an initial appointment and what questions should I come prepared to ask.
Thank you for your post and a very warm welcome to the forum, I am sure many people will share their experiences and idea’s. In the mean time have a look at our newly diaganosed section which may prompt some question for you to ask the consultant - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons. If you find that you have questions after your appointment please give our helpline advisers a call on 0808 800 0303.
I hope this helps and that all goes well with your appointment.
Sue - moderation team
You pose an interesting question which is actually quite hard to answer. You will hear frequently on this forum that Parkinson’s is very individual and in my opinion that is more easily seen where you’re at now ie pre diagnosis and in the early days following a diagnosis than possibly at any other point. Different hospitals, different consultants, different systems etc. One thing to be aware of is that you may not get a definitive diagnosis at your first consultation as there is not a test that says you have it per se. Clinical observation and scans are the usual methods. I would say make sure you know and understand what is being proposed if you don’t get a diagnosis eg what are the scans for? Medication may come up and that’s a huge area of debate eg start immediately or wait and the possible consequences of either. Make sure you understand what they are intended to achieve. Make sure you know too about how to contact after this first appt and usual schedule for f/up. Chances are they’ll watch you walk, have you doing finger to thumb exercises, test your balance, things like that, all very straightforward and nothing to worry about.
Now this may seem an odd thing to say but other than the above I would say just think about what you really want to know at this point and use that to note questions. A quick read through some posts will quickly show you we often advise people not to go too mad at reading everything they can lay their hands on it can lead to information overload and achieve little. You will probably be quite anxious and be given a lot of information; those two things don’t make great bedfellows and you may be hard pushed to take it all on board. That’s why I say think about what questions you have yourself and use them. There will be time enough later to ask whatever you want or need. Others will probably stop by with their own experiences and have some ideas on questions that they may have wished they had asked and that’s fine and useful but I would caution against drawing up a list based on the questions of others unless it strikes a chord with you in which case it merits a place on your list. It is also worth remembering, not that you will have forgotten of course, that you don’t actually know what the problem is yet and it may not be Parkinson’s so there is little point in going in too deep at this point.
For what it’s worth my own experience was straightforward. As my symptoms began to add up they did seem to suggest to me I probably had Parkinson’s. I knew that generally nothing would happen until it began to interfere with my life and that was when I went to my GP and was referred on. I only waited a few weeks to see a neurologist and because I was clearly showing sufficient clinical signs was given my diagnosis there and then, following it up with scans to confirm it. That is not the experience of others, for some it is a major challenge just to get an appointment let alone a diagnosis. So go to your appointment armed with your own questions, try and stay relaxed so you hear and more importantly, understand what is being said and proposed. When you are there ask questions as they arise and be prepared that the process may end up not giving you ‘the answer’ it might but that doesn’t seem to be the experience of many.
I’m not sure this will have been very helpful but do hope you will be able to take something useful from it. I wish you well and if it is Parkinson’s, although it may feel like it, it’s not the end of the world just a different one and you have time to adjust. Let us know how you get on and the forum is here for us all 24/7 - even if you do find you are a fake, there will always be a welcome here if you think we can help.
Thank you for your very full answer and very useful answer. On reading it I think I should have waited a bit before asking for an appointment until the symptoms had started interfering with my life. At the moment I can do most things despite my tremor apart from DIY which I was never much good at anyway.
The trouble is that when you start thinking you have Parkinson’s, you attribute anything that goes wrong with you to it. This is a result of reading too much about the subject as you say. At the time I requested the appointment I felt a bit run down so I thought I was getting other symptoms.
Anyway I will see what happens at the appointment. Whatever happens I don’t think I am ready for medication yet. My tremble is a nuisance but more a nuisance to other people whose floor I have spilt my drinks over.
I’m glad you found my response useful. I think it is difficult when you suspect something potentially serious may be wrong to know what to do for the best; for most there will be an element of wanting to know and not wanting to find out in case your fears are confirmed. That’s why I think, many people go to the internet in the first instance to search for their symptoms. The problem or issue with that is your brain can all too easily go into into overdrive and you start imaging all sorts as you have found. I think you are right to go to your appointment, you really have nothing to lose since not going won’t change whether or not it is Parkinson’s. I just thought I would mention a couple of points for you to bear in mind or disregard as you feel fit! (For the record I am assuming you have Parkinson’s in regard to these points)
First medication is as I said a huge area for debate in Parkinson’s since symptom control is the main aim of treatment as things stand. This is not an exact science, I tend to think of it as a balancing act and deciding when to start, choosing to delay or whatever you want to call it is a key decision but in fact will be an issue for debate throughout - when to change a dose, a drug etc always needs careful consideration. The bottom line is that it is happening to you and you must be comfortable with whatever decision you make.
The other point to bear in mind is that some choose to delay because long term use of certain drugs can result in various side effects. There is nothing wrong with that view and if it suits your way of managing your Parkinson’s, then power to your elbow. What many of us Parkies find however is that it is important to have a quality of life now and not worry too much about an unknown future - today only comes once. So whilst you need to be aware of risks, side effects and all that to make an informed decision, remember about today.
You will find an a way to live with Parkinson’s. It may take time, it may induce a complete range of emotions, you will probably find it challenging and frustrating and, believe it or not funny at times, but you will find a way. We all do, but it will be your way.
Finally life doesn’t stop with Parkinson’s and you may need to do it differently but you can still follow your plans, hopes and dreams. It’s not the end of the road just a change of direction.
And here endeth the Philosophy on Parkinson’s according to Tot !!
Thank you for your reply. Again very useful. I will report back after my appointment on Friday.
The first thing is that it seems that no two Parkinson’s patients give out the same symptoms. I was diagnosed only after having a DatScan 3 years ago at the age of 67, which I would hope is one of the first things that your neurologist will suggest. it’s a very straightforward; It is a specific type of single-photon emission computed tomography (SPECT) imaging technique that helps visualize dopamine transporter levels in the brain. I know, it sounds very technical but basically dopamine levels drop over a period of time and this checks exactly where you are at and in simple terms if it is below 50% then you are more likely to have Parkinson’s. Note that i do not use the word disease because it sounds dreadful in my opinion., but life is what you make it! We are all different and our own attitudes will determine how we cope. For example, I have also got osteoarthritis which gives me problems with both knees [despite the joints having been replaced] and both shoulders as I cannot raise my arms above shoulder level. This means that I fall over quite regularly and if i cannot get myself of the floor, I fortunately have a strong wife who has 45 years of nursing skills and helps me when i am in this position. The one annoying thing for me is that i have always been very active and love DIY, but now have an artificial limit to what i can achieve.
Best foot forward and don’t let it grind you down. Life is what you make it, don’t allow the P word limit you.
It feels almost a let down after the encouraging replies I’ve had but I have now had my appointment with the neurologist and her opinion is that it is not a typical Parkinson’s tremor and therefore is probably not Parkinson’s.
However because the tremor is so pronounced she has referred me on for a scan because there is still a possibility it may be Parkinson’s and anyway the tremor should be investigated.
I suppose the lesson is that a tremor does not always equal P but you should still have it looked into.
Anyway I will report back after the scan - what with waiting times this may be a few months.
I can understand it feels a bit of an anticlimax but am glad I mentioned you may not get an absolute diagnosis so at least I hope it didn’t come as a total shock. I know you feel this leaves you in no man’s land but clearly something is going on. In the meantime hold on to the encouragement and so on you have got from the forum, it still applies. In the interim it may be worth your keeping some kind of diary, when did the tremor start/stop time, what were you doing, how you were feeling, whatever you notice really. It may show up patterns or triggers that could inform or help with your diagnosis. It also gives you something concrete to do to help the diagnostic process so you don’t feel you are just waiting. Note too anything else anyone else notices. Good luck take care and let us know how you’re doing
Hello again Mark
This sounds very familiar because my neurologist also had double originally as he thought it may be something called. ‘essential tremors’. which I thought at the time to be very ironic as I couldn’t think of anything less essential in my life! The only thing I can really add is se what happens and particularly be critical of whatever drug is prescribed.I mean that in either direction depending on how YOU feel after trying them.
All the very best wishes for the future.
Thank you for your last messages, Steve and Tot. I now have a date for my MRI scan for 10 December - surprising quick after the long wait I had for my initial appointment with the neurologist.
I am now working on the hypothesis that I have essential tremor although it’s not essential to my life. It used to be called benign essential tremor but eventually it was realised it was not at all benign.
Anyway I will report back after I get the results of the scan.
Please do, good to hear you are not having to wait too long and I agree re essential tremor comment it’s always seemed a ridiculous name to me.
Same here I have been diagnosed with early signs of PD last Fri, same problem with right arm but I have slowed down a lot, do find it hard to walk even for short distances. Keep your chin up, I will fight this all the way
This is an update on my situation. I had an MRI scan in December that showed nothing except age related changes, followed by a DaTScan in January. I had the results this week and it has come back positive. I do have Parkinson’s.
This came as a bit of a shock as the neurologist had the opinion that my tremor was not typical of Parkinson’s. However it has to be said that at the moment the tremor is more of a nuisance than disabling and I do not yet have the motor problems that other people have. So currently I am not too worried especially as I hear many positive stories of people living with Parkinson’s many years after their initial diagnosis.
Now I have to wait until August until I see a neurologist again. As I wish to delay taking medicine as long as possible this is OK by me.
Just as an aside. I live in Reading and saw a neurologist at the Royal Berks. When I rang up to inquire why the results of my scan were taking so long to come through, I was told that she had moved on and another neurologist was going through her cases. I got the impression that maybe she had not yet been replaced. If so anyone living in this area can probably expect delays when getting appointments. I might be wrong about this.
I thought that I had PD in 1993 after a year or so wondering what my problem was. As the years passed and by doing so much research online, KNEW I had it! 2008 I was getting sooo slow! I went to a GP who immediately identified PD just watching me walk in front of him to the room. I had no regular doctor so this one had never seen me before. I have been a vitamin / mineral supplement taker since 1970. To this very day I am on no meds nor have I seen a neurologist etc. I am 75 - aging but doing ok for my age. I’m thankful. Life is still good and you, too, will see that is true!
I know that eventually I will need medication but I want to put it off as long as possible. Meanwhile my main symptoms are my tremor on my right side - I have to be careful when holding a cup of tea or coffee because I am not always aware of my tremor, extremely slow urination which could be caused by something else, and absent mindedness which may just be age related. I also have minor symptoms like reduced sense of smell and reduced swing in my right arm when walking.
Good to hear from you sounds like you’re holding up quite well just now and long may it be so. Just a note that came to mind from something you wrote. When you have a chronic condition there is a tendency to attribute everything that goes amiss with your health to that. You are right not to assume slow urination is the PD although of course it might be. At the end of the day you live with it whatever the cause but it is important not to assume so that it is properly treated and minimise the risk of exacerbating or complicating the Parkinson’s still further. I appreciate that is stating the obvious but it is easily overlooked and easy tosee Parkinson’s as always being the cause. Keep well, keep safe and keep going!!! Best wishes.