Early Days

Hi I was diagnosed a month ago but have known something wasn’t right for some time. Starting to tell friends and family-a few are unsurprised which I feel a bit funny about!
Mostly coping when I don’t dwell on it too much.
I’m 54, have a husband of 28 years and three grown up children age 19-25. I am a carer for my 24 year old son who has epilepsy autism and severe learning difficulties. We had planned on him remaining with us until his 40s.
Obviously very concerned and scared about the future and being another burden on my family.
My daughter and husband are heartbroken and my teenage son is at uni and seems ok for now!
We do joke about it but I can’t help thinking the worst (it’s the dementia that scares me) on my bad days.
I’m on pramipexole which has helped a bit -still gradually increasing the dose weekly.
Waiting brain scan results too -what will I learn from that?
Thanks in anticipation x

I should tell you my symptoms: tremor in left leg (started as a faint vibration this time last year); weakness generally and more so down left side including left hand not being as dexterous; unnatural gait walking and shuffling in smaller spaces; nerve pain down outside of left leg which made it very difficult to sleep; a drained weak (dizzy?) feeling often on rising.
I have had painful knees for years and hips too but as X-rays only showed normal wear and tear I presumed it was referred pain from my back but an MRI last summer again only showed normal wear and tear. My first neurology appointment was last September but I was told everything was normal! But friends tell me in July/August they had noticed I wasn’t walking properly!
Anyway the pramipexole is helping with the nerve pain and the tremor is not quite as obvious so I am sleeping a bit better at the moment.

Hello Jenga, this is just a quick note because I have read your posts a couple of times and been pondering on a reply but haven’t quite worked out my thinking yet and I’ve had a busy couple of days. I didn’t want you to think your post had somehow been passed over or something. If you could bear with me for a day or two I can’t promise to resolve all your concerns but hopefully i will come up with a few things that may help. Thanks for your patience. I will return!:slightly_smiling_face:

Thank you @Tot , appreciated

Hello Jenga
I’m back as promised and ready to astonish you with my wisdom. Not really, I just write as it appears to me and you can take it or leave it as you wish. I have only got what you have written to go on so it may not be wholly accurate but with luck it may help you sort out a few things or perhaps see them from a different perspective.
First I want to say I am glad you have started to tell people. It is not an easy thing to do but, in my opinion, it is far easier when people know. It stops them imaging all sorts, that it might be a neurological condition probably won’t even occur to many. As you will see if you read some of my other posts there is an oft repeated phrase namely while telling people is hard, once done it quite quickly becomes old news. I suspect the reason some people were not surprised to hear your news is because you probably had some leakage, some small signs that they may have noticed, a slight shaking, walking a bit strangely, trouble picking something up etc., which would lead them to think something may be awry. I suspect they didn’t mention it because they didn’t know how and anyway, what if they were wrong or it was something more serious than they were thinking; result, best not to mention it.
Second I was pleased to read your nerve pain, tremor and sleep pattern are a little improved and that always makes a difference.
The main thing that struck me when reading your posts is that there are two main parts namely, the Parkinson’s itself and the future of your son with complex special needs.
To take the second point first I’m not in a position to say a great deal as I don’t have a crystal ball. What I can say is that I don’t think you need give this any particular attention, no more than you probably normally do anyway, just now. Parkinson’s in most people is a slow moving condition so time is on your side to sort this out later. At the moment the priority is I think you and how you are managing your diagnosis.
The first days and weeks after diagnosis are not easy. Quite apart from the practicalities of 2getting a treatment plan sorted and so on, it is a lot to come to terms with both for you and, in your case, your husband and daughter and indeed anyone else you know to a greater or lesser degree. Emotions tend to be topsy-turvy and many have no idea of what they are facing and that can feel like life has ended. Others go mad reading everything they can get their hands on and either end up with information overload or they grow to fear for their future. Many will go through some form of what is effectively a bereavement process because life not only won’t be the same again but they are unable to see beyond this to a life with Parkinson’s and certainly not to be a life equal to one they’ve lost. All of these sorts of things are entirely normal and why it is important to give yourself time to get used to the diagnosis and the reality on it’s impact on yourself and those around you. So take it steady, keep your information search to those things that are bothering you now; other things can wait, as I said above you do have time.
Things do settle down and you will find that you can have a good quality of life with Parkinson’s including keeping your hopes and dreams alive; I’m not denying that it can at times be challenging and you may need to do things a little differently, but it’s not impossible.
Re your concern about developing dementia, obviously I can’t tell you you won’t, but nor is there a lot of point wasting energy worrying about it at this stage. I would imagine that for a good many of us with Parkinson’s it would be considered the worst thing that could happen. The fact is like everything to do with Parkinson’s since there is no cure as things stand you need to find away to live with it and I personally have a rather black humour approach to that ie if that’s my fate I can’t stop it and it will be hard at the beginning when I will probably have periods of lucidity and periods of confusion but that will pass and I will be content to no longer know whether I am confused or not!
I don’t know how much this will help but I hope it helps at least a little bit. I will say cheerio for now with a final thought. I am not alone on the forum in being post diagnosis by a decade or more, still standing, still living with minimal help and still living a life that is far from that black hole downwards many feel at the start.
Let us know how you are getting on.
Sending you and your family my very best wishes.


Hi Jenga,

Excellent advice from Tot.

I was diagnosed about a year ago at the age of 65. Like you when I told people they were not too surprised! I also have concerns about developing dementia. However, it is not inevitable and I guess everyone of a certain age may develop it regardless of whether or not they have Parkinson’s. I try to live in the present and enjoy life as much as possible
At the moment things are pretty stable. I continue to care for my partner who has limited mobility. More than likely you’ll be able to care for your son at home for quite some time to come.

We have a 28 year old son who is severely autistic. When he left school, we decided that an adult placement would be the best option as I (the main carer) was having cancer treatment and our son was and is a very active and energetic young man! We wanted to be in control of where he was placed. We did have one short lived unsuccessful placement, but he has now been at the same excellent small care home for 8 years and is extremely happy there. Pre-Covid he frequently came home for weekend visits and we have been able to visit him often albeit in the garden which can be a bit chilly!. My older brother is also autistic and again lives in an excellent care home with 24 hour support Please don’t think I am suggesting that your son should leave home. I just want to reassure you that should you need to make this decision in the future that there are some great places out there.
Take care

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Thank you so much @Tot and @Folkmusician for your replies. I feel a bit calmer now.
You’re quite right @Tot to advise only to worry about what affects me now instead of worrying what might happen in the future.

My maternal uncle and paternal grandad both had Parkinson’s when they died but that was 23 and 41 years ago respectively so I guess treatments have improved but my diagnosis is hard for my parents and siblings because of this.

We’ll all get used to it I guess and @Folkmusician thank you for your reply. Our son is also extremely lively! We will start the ball rolling as to residential but there is no rush until we find the best place possible for him.

I actually had a good day today with little discomfort so meds making a huge difference already. Brain scan came back normal.

PS how to deal with people saying I must try this or that diet/treatment/therapy/cbd oil etc etc!!! Drives me potty I just want to get used to my diagnosis first! :joy:

Hello Jenga
Very pleased to hear you are feeling a more yourself today and I am sure that lovely and positive post from Folkmusician must have gone a long way to ease the torment you were facing - although you face your own challenges with Parkinson’s, I suspect your bigger concern was over your son’s long term future so Folkmusicians post was very timely.
Regarding being given ’ advice and try this and that’ I have come to the conclusion that it is part and parcel of having Parkinson’s. These days some years on from diagnosis, it tends to happen periodically usually when something has been on the television or made a splash in some other form of media coverage. If I’ve been told once I’ve been told a dozen times I should try tango :dancer: dancing. I’ve never been interested in tango dancing and I always get intrigued that folk assume I must be now because it’s been shown to help with movement etc in people with Parkinson’s. Whilst I don’t doubt that it’s not for me and actually there are equivalent activities that will have the same result. It can drive me mad at times. I try to remember that people have my best interests at heart but at the same time I feel I have to be honest in my responses because it is important to me that my approach to my Parkinson’s is accepted and adopted 'by others. In a nutshell that is I don’t want it front and centre, the main subject of conversation the whole time. So I say as kindly as I can, thanks but no thanks or I will look at that when the times right but at the moment I’m ok with my meds - something along those lines - and not let it wind me up too much. Sorry I can’t say do this and it and it solves the problem but I’m sure you will find a way to manage this as your own approach to your Parkinson’s becomes clearer.

I thought maybe both you and Folkmusician may be interested in this which I posted a little while ago in a reply to a different post. It was written some years ago now for my friend who has a son living with autism.

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Thanks Tot great advice I think I’ll follow suit. People want to say something positive I guess -I will have to train our friends!
Yes foremost in our minds is our son and thanks for forwarding the poem, very apt.

Sounds to me like you’ve come a long way since your first posts. Good for you, I’m delighted but the forum is always here if you need or even if you don’t! Take care

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Hi @Jenga, @Tot hasn’t mentioned this in her post but she has a saying but I will call it a Mantra, it goes like this, you have Parkinsons, it doesn’t have you, if you think along these lines you will feel better about yourself.


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Thanks for link @Tot . I was interested to hear about your family history of Parkinson’s @Jenga
My autistic brother has Parkinson’s too but as far as I know there were no previous cases in our family. When they confirmed the diagnosis of PD I had a bit of a Monty Python moment of “Nobody expects the Spanish Inquisition” !

I know what you mean about people suggesting things you might try - I just smile and say “interesting”… and then move the conversation on. Good news about scan and hope medication works well for you. Look after yourself .Best wishes

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Thank you cruise controller for the mention of my ‘mantra’ as this seems to have grown legs of its own, I’ve seen it quoted several times there may be some of you who are interested in how it has come about which was in a poem I wrote and posted in the creative corner in February 2020 called that stubborn belief. Here is the poem.
PS feel free to carry on quoting if it helps. I think of it as my catchphrase perhaps you have a saying that keeps you going if so why not tell us about it.



Thank you. Hope you’re doing ok

Yes have been feeling more positive and the meds are working well. Bit of a low moment though when I found out my GP has reduced his hours so I have to have a new one!

That’s good to hear Jenga. There will always be bumps the road, conflicting advice or you will be going along nicely and something or other will come along to trip you up, it’s the nature of the beast as it were. It may take some time and not always be easy, but you can find a new path the key thing is don’t give up, don’t give in you are worth more than the Parkinson’s ever will be.
A final thought for a bad day. Put a smile on your face and say ‘I’m having a bad day’ it doesn’t work because you find yourself smiling and that makes you feel better. It works with a glum face and saying ‘I’m having a brilliant day’ too but not recommended as the aim is to improve mood not make it worse!!