Slowing down

Hi everyone, it has been quite sometime since I’ve posted I have dropped in now and again but have not felt the need to ask your advice when I maybe should have.
I was diagnosed back in 2006 and up until, I’d say four years ago, I was still working albeit just three days a week, now fully retired and many days quite frustrated by that but I know it was the right thing to do.
Anyway my question is I feel I am currently slowing up tremendously in movement, mobility and also after any activity my tremor kicks in quite significantly. I have also recently started to notice and feel tremor in my lower jaw and lip which I am particularly aware of.
I find every day is a push, push, push to keep on top of this condition, I try so hard to motivate myself everyday to keep aware of when I’m slowing up, making small movements, not smiling or at the least being aware of my face drooping, it is all such hard work. My question I guess can I make this any easier by looking at increase in meds, doing more exercise or changing the way I do it now? I realise it is progressive and meds are not just the answer I walk my dog everyday first thing in the morning for half an hour, when I get home I’m ok then I have a sweating episode my tremor kicks in and I generally feel tired and not good.
I don’t like the place I’m in at the moment any advice greatly appreciated x

Hello newdidit
Sorry to hear you’re struggling a bit at the moment. I’m not sure I can offer much that will help tbh but I want you to know that I do understand and that it can be very hard to be positive when you are feeling as you do.

One of the difficulties I have in living with Parkinson’s is in knowing what is actually causing the problem, which may sound silly but it is not always easy to tell if for eg your meds need to be increased or if perhaps changing the times may help; or how much impact a low mood is having on your physical function. Apart from anything else it can be an exhausting condition to live with, when consciously or not you have to be almost continually aware of so many different elements.

From what you’ve written it feels to me that you are very tired and that your usual coping strategies are letting you down a bit and that’s making you feel a bit low. Unfortunately coping strategies do not come with a 100% guarantee and they may need a bit of tweaking too.

Sometimes it can help if you better understand the symptoms you are experiencing.
For example you mentioned changes to your face have a look at these

Have you tried something like relaxation, meditation, tai chi - you tube have lots of videos and if you can find a way of relaxing a bit about what you are experiencing at the moment that may help.

It might be worth getting your meds checked just in case and you may want to think about going to your GP if you feel your low mood is an issue.

Finally why not give the help desk a ring and see if they can give you some suggestions re a way forward

I hope you may be able to find something in what I’ve written to spark off some ideas.
Do let us know how you are getting on, you’re not on your own.
Best wishes

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I’d get a meds review asap. When I’ve experienced similar state to yourself, it has always meant an increase in meds is needed. If you have to wait for an appointment, try a gentle increase in meds to see if it helps,

Many thanks for the reply Jane, I very much feel the same but to be honest I’m not sure I would know where or which meds to increase. I do have an appointment in three weeks which initially seemed ages away, but will be happier when it gets here. X

Well here we are people…still struggling big time I’m afraid to say.
I have actually seen PD nurse last Weds, just waiting for her to liaise with consultant as to wether increase PD meds or try an anti depressant.

While I am very happy and grateful for appointment I am today thinking that I can’t go on much more feeling this way, I feel like it’s a chicken or egg question am I depressed because of my symptoms or are my symptoms worse because I’m depressed. Which ever way it is I truly wish I had the answer.
I do feel low I have cried buckets when with the nurse, I’ve tried to”buck” myself up, I’ve exercised, done some relaxation I walk every morning regardless of how I feel or how slow or fast I am with my dog but they still persist.
Really heavy legs, right arm tremor at times ridiculous, at this present moment this is taking an age to type, my right arm at times feels so weak and my grip is very poor. Generally very very lethargic.
I did say I look at myself and I just don’t recognise me any more I’m not the person I was and things are just not getting better.
So I wait to hear from nurse I really hope next week, but I would very much like to hear from anybody who has gone through a bad patch like this, I would say it’s been for the past 3 or even 6 months but at the same time it also feels like this current episode and drop in function and mood has happened all of a sudden. Does that sound odd ?

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Hi Newdidit, we’re sorry to hear you’ve entered a difficult stretch. We certainly understand that this is common, so please at least know you are not alone. Please do consider calling our wonderful advisers at the helpline at 0808 800 0303. Not only are they excellent listeners and always supportive, but they may be able to recommend resources in your area of which you’re not aware.
All our best,
Moderation Team