Does anyone know what to expect from Parkinsons and what is normal. It is not good enough after 200 years+ to have no idea what is normal and to be told over and over again everyone is different. I am finding it a struggle to cope with my symptoms and wonder if this is my life from now on or could I get a full medical somewhere (privately would do) and sort through what is Parkinson’s and what can be improved with treatment i.e. pain control. Any advice from a doctor would be appreciated as my doctor is useless and has resigned recently.
I’m so sorry to hear that you’ve been struggling. You’re right, Parkinson’s does affect everyone differently, but when you’re living with the realities of it day in and day out, I can imagine how unhelpful that sentiment can appear to be even if it is said with good intentions.
Although we can’t predict what the journey ahead will look like for you specifically, we are here to support you every step of the way - we have a lot of helpful information via the Parkinson’s UK website on how to manage your symptoms. This includes information on treatments and therapies as well as a search tool for local services and support in your area. Please visit our website here for more info: Living with Parkinson's | Parkinson's UK
Do remember that you can always give our helpline a call if you need to speak to someone, especially if you’re not happy with the medical professionals that you’ve been dealing with; as well as providing you with support, our advisers can arrange for a Parkinson’s nurse to get in touch with you. Please feel free to call us on 0808 800 0303.
You make a very valid point but the reality is that all sorts of variables can affect one’s Parkinson’s symptoms hence the oft repeated phrase of it’s very individual. You won’t need me to tell you that when you are going through a bad patch, particularly an extended period such as yours, however hard you try to ‘normalise’ symptoms in an effort to make life manageable it can at times be something of an impossible dream. Reah is right there’s lots of information around, the helpdesk, this forum all kinds of places for support; but for me the only way is to accept the very unique Parkinson’s that is yours as an individual. Once meds or whatever treatments you may or may not be having have been reviewed, once you’ve read whatever that may or may not help, or spoken to xyz, you are still left with you having to live your life. I am not suggesting such avenues can’t help, they can all be useful in their place, but that still leaves you as the one struggling to cope with the physical and mental effect of Parkinson’s and that’s how it will be for the rest of your life or if the dream of a cure becomes a reality. That may sound brutal and I will emphasise here it is my view, not the only perspective. I have long since decided that I have to find my own answers, my own way of making what’s happening to me ‘normal’ to accept that my coping strategies don’t come with 100% guarantee and there will be times when I want to stop the world and get off. I sometimes think it doesn’t matter how much support I have, I am alone in my Parkinson’s world and its a world only I truly know. I wish I could tell you differently and maybe someone else on the forum can but I have always strived to be honest in my replies whilst making it plain it is my personal view. That is what I have tried to do here. I accept totally it’s not an easy read and doesn’t answer your question but to me it is a question only the individual can answer.
I send my very best wishes to you and really do hope you will soon reach a more peaceful patch.
Tot
Once again Tot you write honestly and realistically however difficult for me to accept. I know I am looking for the “Holy Grail” but I hate feeling dreadful every day when I was the one they called “Tigger”. huh more Eeyor these days.
Hi @farmers_wife
Sorry to read about the hard times you are facing at the moment. Nothing much to add than @Reah and @Tot .
Parkinson’s is a reality you needs to accept but it’s difficult. Accepting the fact and beibg friendly with that fact and then create a positive Mind to move forward, that’s my policy. Each person is different with symptoms and progression of the disease. So better to find your own way to cope with symptoms along side your treatment.
Your sense of humour is good. Hope things will get sorted soon for you.
Take care
Tinku.
Farmers wife
I agree that the professionals are often very unhelpful about how bad your Parkinson’s can get. I feel that if we knew certain symptoms were going to be part of our iives forever or could be helped by a mixture of different drugs we would feel more in control.
Personally I have mixed certain medication and have been told off by the Parkinson’s nurse for ‘over medicating’. But I feel they are not the ones experiencing the pain and the debilitating effects.
Some have suggested joining a support group but there I might meet someone in a further stage which I dont want to face up to. This sounds contradictory to my earlier
view but a Parkinson’s future is scary.
Hello Cathiesmalll
I completely understand what you have written and I expect you’ve read my reply to farmers_wife above and be aware of my view. I wanted however to address your fear of the future which I suspect many of us Parkies think about from time to time if not the whole time. The fact is as everybody is prone to telling me if and when the subject comes up, nobody knows what the future holds. True but not helpful because the one thing we can be certain about, unlike others, is that our Parkinson’s will progress and we are not going to have the healthy old age we all assume will be our lot. That is a very difficult thing to accept but that is for then not today not for now. My own personal way is to have developed a mindset that only looks ahead as far as I need to and no more. My main concern is not to be a burden on my family so I have put in place my Will, LPAs, and funeral arrangements and I have also put in a forward planning application for supported housing should I not be able to continue to live in my present flat. Realistically I can do no more and having set those things in place I made an active choice to take each day as it comes because it only comes once. Not always easy and certainly not infallible but I try very hard to do so precisely because it helps me to accept what is happening is normal for me, not others with Parkinson’s, me. I choose to stay positive as much as I can and that’s what I will continue to do. Maybe there will be a time when my symptoms are the worst they can possibly be but equally they may not, so I’m not going to waste my life worrying about that now. I can empathise absolutely with what you and farmers_wife have written but sadly Parkinson’s is complex and I believe that one’s mindset is half the battle. I don’t know if this makes any kind of sense to you. I can only tell you what I do that works for me most of the time but please don’t get too caught up in a future that may not be and let that stop you living as good a life as you can do today. To use that ad catchline which is much overused, you’re worth it. We all are.
Tot
All though in principle I agree with your comment to cathiesmill especially regarding forward planning I don’t accept your view that it’s our lot and we should accept it and take each day as it comes. We are heavily in the minority regarding research (look at cancer and the strides forward in the search for a cure) I took have lost faith in the medics and try to fibd
Sorry lost the screen
To find a solution to my current problem today for example I have had no sleep due to deskinesia and I have a busy day a head so I am planning my meds accordingly. I will not accept my lot and hope some new drug will help in the near future.
that’s fine with me farmers_wife. I have always said I write what works for me and that we must each find our own way. As it happens I agree with your view in many ways and it is precisely why I think as I do.i have never ànd will never say my way is the only way. My apologies if you read it that way it was not intended but make no mistake I am not passive about my Parkinson’s and you are not correct in saying I accept my lot. I challenge where and what I can and that’s kept me going and suits me. your anger or whatever you want to call it does the same as my posivity. I too had a bad night and have a busy day the only difference is in approach and there’s nothing wrong with that
Hi @farmers_wife
i can well understand your frustrations with life since the onset of Parkinson’s. The oft repeated mantra ‘everyone is different’ is in my experience quite true. I know of at least 4 others have acquired it and all are different; the main problem that has caused or prevented a diagnosis /,cure. i myself have two of the classic items; poor handwriting, which used to be ‘copperplate’ and poor speech, which was previously clear as i used to give training sessions. Unfortunately my main problem is osteo-arthritis which tends to mask most other symptoms.
i just get on with it. which has meant having a stairlift fitted, using a rollator upstairs and down and a nobility scooter when I’m out. Lucky for me i have a long-suffering wife who is a nurse and I forgot to mention the frequent falls! Perhaps we won’t even go there for that one…
Hiya,
I just wanted to add something that may help as its from our own personal experience.
To say that everyone’s PD is different is sadly very true…everyone’s journey is different, symptoms, pain levels…its so hard to figure out what’s best for you and the sad fact is most Neuros and GPs still use the generic template so they stick everyone in the same basket and almost hope for the best.
My husband has had 3 GPs and 4 Neuros and finally after a lot of kicking and screaming we have never been more “sorted”
My basic point is this…if your GP is rubbish, move GPS…we did and we now have the most amazing GP and that is invaluable.
We had 3 decent run of the mill Neuros but our GP recommended the Neurologist we have now and she is young and quite honestly a breath of fresh air.
I find the field is quite stagnant and the neuros quite set in their ways so you get “maintained” rather than having someone who is trying constantly to get you a better standard of living.
We went from having no one to a GP worth his weight in gold, a Neuro who is at the forefront of all studies and is willing to try anything, and a PD Nurse who fills in the gaps.
Don’t settle is my absolute point…if you aren’t happy vote with your feet and find a new GP a new Neuro, whatever it takes to make you feel like you are understood, listened to and given everything you need to help you deal with your journey.
Hello Beth how refreshing to hear of your endeavours to find a progressive and helpful doctor. I asked my Parkinson’s nurse and consultant for a specialist in Parkinson’s as they both have repeatedly left me to experiment with my meds and needless to say I have had no success in finding a satisfactory way of managing my symptoms. I am convinced there are other drugs on the market which are not available to us. After reading your response I am going to try and find a private consultant who specialty is Parkinson’s.
Hello again Beth I was wondering if it would be possible to have the name of your consultant and the area you live. I live in a very rural area and GPs are thin on the ground. However I am searching private consultants but it is dartboard time again!
Hiya,
I live in Warwickshire in a tiny village in the back of beyond but my husbands GP is in Stratford-Upon-Avon and his Neurologist is at the University Coventry & Warwickshire Hospital.
I will just say this though…when my husband was first diagnosed he was 41 and we both had good jobs and private healthcare so he saw the top consultants…we were even seen by a top Neurologist at The Queen Elizabeth Hospital in Birmingham ( again private)
we walked away from both.
The Neurologist we now see is through the NHS and I wouldnt swap her for the world!
The constant issue we found was we would see the Neuro once every six months…same routine…how are you, write this sentence ( so they could see if his handwriting had gotten any smaller) any issues…okay well we will keep the dose the same, thank you very much and goodbye…it was like a conveyor belt and you never quite felt that you had options to try new drugs or play with doses or deal with certain symptoms…
This new Neurologist is so quick to jump on things, she has regulated his dosage so he no longer peaks and troughs, she has dealt with his dyskinesia, his sleep is better than ever and all the very undesirable side effects of PD have vanished completely.
The relationship between you and your Neurologist and your GP should be strong and you need to trust in them…if you dont then you have every right to find someone you do trust in.
I wish you all the very best, I really hope you can find someone who can give you what you need.
Best Wishes,
Beth
I should just add that The UHCW is a teaching hospital here and a research hospital so anything new that comes up Dr Strens (our consultant) is sitting on the front lines ready to receive.
I will say though, please dont experiment with PD drugs, been there done it got the t-shirt it can be dangerous…
What are you currently taking if you dont mind me asking
