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Not diagnosed but think I have Parkinsons- tips please- thank you

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#1

Hello
I am not officially diagnosed however I think I have lots of symptoms and have spoken to a neurologist twice in the last year or so over the phone.

I am 50. I have been having some bladder issues. Can only describe it as a confused bladder where you have to go more times than is really necessary.

In addition, latest symptom is that I wake up with very tight calves/ to the point where I have to even consciously walk on the balls of my feet to ‘wake’ them up. It quickly gets better throughout the day.

Before I get sent off to a Urinologist for lots of lengthy investigations, is this all part of Parkinsons? Have already had an ultrasound and urine test- all of which showed nothing and were ‘normal’.

For the calves- not truly sure if it is the calves or the achilles heel- do I just see an Osteopath and do exercises every morning or something like that? Again, is this a standard Parkinson symptom?

I asked the GP if the bladder issue could be related to Parkinsons and he asked the questions:- ‘have you got a tremor/ have you got a mask like face/ have you got a shuffle/ has your handwriting changed?

My mum has had Parkinsons for 18 years since 2003 so I am super aware of what can happen later down the line (I feel I know ‘too much’) if you see what I mean. However, I am just trying to deal with what I am presented with at the current time.

Have any of you joined Research groups? I would be happy to get involved.

Have any of you looked at the link between estrogen and Parkinsons? These symptoms are so close to the menopause that I feel in my case at least, there must be a link. Is HRT a good or bad thing to take with Parkinsons these days?!

Who knows? : ) So many questions. Just appreciate any hints and tips from anyone if the above resonates with you. I also have a 5 year old and a soon-to-be 4 year old so added incentive for finding a way to kick Parkinsons into the ground!!! : ) Thank you

#2

Dear HavanaS,

Just to say, I really admire your calm and philosophical approach.

I’m sorry to say that I don’t feel qualified to offer any symptoms’ advice: however, I feel that I’ve wasted quite a lot of time frustratingly chasing “red herrings” - and, although I had a diagnosis two years ago (now 70) and, by the way, female, I’m still not entirely sure what is Parkinson’s and what is something else (e.g. severe arthritis in ankle which radically affects walking and gait anyway!).

Whatever your outcome, I think that if you’ve got others to think and care about, it keeps your own situation in proportion as you just can’t focus on yourself for too long.

I’m sure that others can offer more practical advice, but I just wanted to express my emotional support and would be interested to learn how things progress. As you say, we all need to find a way to “kick Parkinsons into the ground”.

Very sincere good wishes to you all. Your sons will certainly keep you busy and sane.

#3

Thank you. I really appreciate you getting back to me. Yes- with young children, I really don’t have too much time to ‘dwell’ : )

Really appreciate the forum and everyone’s wonderful advice so hope someone can help me on those questions.

I just hope a cure is found soon or at least ways to help slow the decline and I want to do all I can to seek it out!

#4

Hello HavanaS
I echo much of what baz has written. I likewise don’t feel I can make much comment on your symptoms and given your Mum has had Parkinson’s for many years there is not much we can probably add about which you won’t have at least some knowledge. I would however like to make a couple of comments if I may.
First as baz2 observed you have an admirable approach to whatever it is that is happening, with your aim of kicking Parkinson’s into touch if indeed that is what it is. I have had my own diagnosis more than a decade now and like you, but for different reasons, had some knowledge and experience of Parkinson’s before developing it myself. As a result of that and a preference for optimism, I firmly believe that staying positive goes a long way to keeping you going. Not always easy but worth striving for - my own little mantra being ‘I have Parkinson’s, it doesn’t have me.’
Second you may find, as I do, that your prior experience can be something of a double edged sword. For me the useful part of knowing something of the condition from close up experience reduced the fear factor, I recognised what was happening as various changes took place and knew what to do, that sort of thing. You may well find the same. The double edged bit comes in where even though you know what you do and can rationalise it as being ‘normal for Parkinson’s’ it doesn’t stop or minimise the full emotional impact that can play as much havoc with an ability to cope as any physical symptoms. It is an interesting position to be in!
I wish you well and if it is Parkinson’s, whilst you may not be able to kick it wholly into touch, i have every confidence you will succeed in being someone who has Parkinson’s but it doesn’t have you.
Tot

#5

Thank you. I really appreciate the response. I totally know what you are saying. It’s definitely a double edged sword. It’s a case of knowing what’s coming, trying to put it out of your mind, and hoping the scientists can find some answers soon.

I really did feel that I knew more than the GP when he asked me those basic questions as I feel that it is not as straightforward as that.

However, my mum can no longer remember the detail from the early stages when she was 62, which was 18 years ago so would love some detail on those early stages and tips for getting through it. Not sure how many years she had other symptoms before she was diagnosed.

On the practical side, I guess at some point, I will get back in touch with the Neurologist and sense- check the challenges I have been facing.

Really not sure what to do about this achilles heel which feels inflamed and think I will ask the osteopath.

Will also ask the Neurologist about the HRT and estrogen link if no one else on here has any thoughts on that.

Thank you

#6

Hello HavanaS
As with all things Parkinson’s it seems everyone’s experience is different with common threads but I can certainly tell you of my own early days. I went straight on to meds on diagnosis. They took a bit of getting used to partly because despite having anti nausea tablets I still felt quite sick whilst my body adjusted. That didn’t take overlong but wasn’t very pleasant. The other reason it took some getting used to was because I rarely took tablets at all let alone 3 every day. On the plus side I quite quickly noticed a difference. At the time I was weaker on my right side but my biggest problem was a marked decrease in fine motor control in my right hand which greatly improved. I did not and do not have tremor which I have always been grateful for because that makes life so hard but also means I can’t comment on if meds make a difference to this common symptom. Once things settled down after the first few months life carried on pretty much as it always had. Changes since then have been slow and gradual. Over the course of the next couple of years physically I held my own well but non motor symptoms began to emerge notably I couldn’t manage pressure as well as before which eventually led to my taking voluntary redundancy which happened to be on offer very opportunly at the time. I am still holding up well but am obviously not as good as a decade ago. Having said that I’ve had no major drops it’s all been gradual and so adjustments to meds have been equally gradual. I will over time begin to recognise things are changing and if they are enough to be an issue and bring to the attention of my consultant. So what I get in effect are a few weeks/couple of months that can be a bit unsettling until meds get sorted then things settle and life carries on. I plan ahead only as much as I need to make my future as secure as I can ie make a will, power of attorney that sort of thing so as not to be a burden on the family having done that I try to make the best of the present and not worry about my unknown future. I intend to remain independent for as long as possible and remain optimistic about my future with Parkinson’s - which is my key coping mechanisms. I hope that has been helpful but please ask if something specific is bothering you and I will do my best to help.
Tot

#7

Hi @HavanaS and welcome. You say you have

but list only two, bladder and calves. Perhaps the experience of your mum is making you overthink this?

What is the answer to these questions?

In my case a 30 minute appointment with a neurologist was enough for him to give me (51, male) a positive diagnosis. He then arranged scans (MRI and DATSCAN) to confirm.

Here is a list of symptoms that helped me realise I had PD:

Take care!

#8

Thank you- appreciate you taking the time to respond and hope you are doing ok.

Yes- I have tracked symptoms for a couple of years. I think (hope) it is early stages and they can be held at bay for as long as possible.

The two symptoms I mentioned were the ‘bothersome’ ones that I have investigated to eliminate anything else sinister.

I have only been able to speak to a neurologist twice in the last year because of the Covid situation. They haven’t seen me in person.

I really contacted them because I wanted to be on the radar in case any advancements in science came up and I could get involved in research- hopefully at an ‘early enough’ stage.

My mum will have had it for years before she was finally diagnosed when it became noticeable by my brother when he saw her little finger had a tremor as she opened a christmas present.

By ‘kicking it into the ground’, I mean that I want to reach out to all the professors of neurology with the latest information to get involved where I can as hopefully, it can’t be too long before science comes up with some answers! : )