My wife Sheena has just been given a diagnoses of " a touch of Parkinsons" from a private consultant Neurologist which upset her greatly. She has really bad anxiety and her sleep pattern is non existant. After waitining a week we were able to make an appointment to see the NHS Parkinsons neurologist but this is 4 weeks away. Her GP was unable to start her on any meds and the Parkinsons Nurse cannot act without the confirmation from the NHS neurologist so we are effectively in limbo until then.
What can we do other than wait? What can I tell her? I am usually the confident, it’ll be fine sort of guy, but this has me struggling!
Any thoughts would be appreciated,
We’re sorry to hear about this vague diagnosis, and the stress it has caused Sheena, as well as the unfortunate delays caused by the pandemic. I’m sure our community will have some words of support and wisdom, but you can also call us directly for free and confidential support at 0808 800 0303, where our knowledgeable staff will be able to offer resources and support. And be sure to have a look at Parkinsons.org.uk for additional information as well.
Please accept our best wishes to you both,
Hi @MartinK, Welcome to our world, until your wife gets a proper diagnosis carry on with your normal day to day living, don’t change a single thing not even after having it confirmed. It can take a long time before you have to make any minor changes in lifestyle. When the diagnosis is confirmed, speak again with your Parkinsons Nurse they can give you so much help and advice a good weapon to have in your arsenal. Living with Parkinsons is a day to day thing, you have both good and bad ones but for both of you I recommend you both adopt a positive attitude to the disease which is what I tell all new people diagnosed. If it is confirmed that your Sheena does have it then think on the following, you have Parkinsons but it doesn’t have you !! Be the best you can everyday and treat it like an irritation that won’t go away, rise above it. Everyone diagnosed with the disease is different but Sheena will adopt her own coping strategy. In the meantime you be strong and positive for her, get your confidence back and be there for her. We on the Forum are always around to offer advice and help where we can so keep us informed of the outcome. Be the rock she wants you to be, you will come out the other side better for it. Take care and stay safe.
Hi Les, thanks very much for the advice, unfortunately we are already having to make big changes in our lifestyle due to the effects. Sheena now requires help with hair washing, dressing, driving, cooking, etc. Every few days it seems her fine motor skills are declining. Her walking range is limited and very slow and her sleep pattern is now erratic at best. I feel we are very late for diagnosis and we are desperately worried that the meds will come too late to help! and its still 3 weeks before her appointment with the Parkinsons Registrar.
So I suppose my question is How much will getting meds started help? Can we recover the lost skills or is it always down hill?
Sorry if this is very negative, but I’m loosing the ability to see the positives. I am making like a rock, but at some point Sheena may see through the facade.
The anxiety you are feeling comes through loud and clear in your post, along with the distinct impression that panic is beginning to set in. I suspect that your wife is feeling much the same, unsurprisingly I have to say. I am going out on a limb and guessing here a bit, so apologies if I am way off the mark, but I suspect that in an effort to protect each other you may not be discussing things as openly and honestly as perhaps you usually do and this is adding to the feeling that you are sinking. It may well be the case that since stress and anxiety are known triggers in all sorts of areas relating to health, this is exacerbating her symptoms. In my opinion and I stress it is my personal opinion, but being strong for someone is more than being reassuring in the ‘you’ll be alright, we’re in it together’ sort of way. To me it is about honesty in what you think and feel that allows complete trust and from that strength automatically follows. Sometimes you have to let the vulnerability show to find the strength to be supportive of each other. I hope that is not speaking out of turn and it is not intended as a criticism of how you are handling things, it’s just food for thought really, something that came to mind as I was reading your post.
Moving on, I have no idea what is meant by ‘a touch of Parkinson’s’ and it does seem a slightly odd thing to say so I hope you get some clarity at your next appointment. Having said that you need to be aware that there is not a definitive test for Parkinson’s and it may be the case that a firm diagnosis cannot be given at that appointment.
I can entirely understand that you and Sheena feel rather at a loss at the moment, stuck in no man’s land and that 4 weeks can feel like a lifetime. I am again going out on a limb here and would not normally respond in this way to a first post but gut instinct is telling me that you need some information that may help you, help Sheena. First of all though I need to make it crystal clear that what I am about to write is very basic and assumes a diagnosis of Parkinson’s. I am using bullet points for clarity
Parkinson’s results from lack of dopamine a chemical that is needed to give smooth movement, enable multi tasking basically covers all those skills that you do without thinking that allows you to get on with living - walking and talking, sitting down and getting up and so on.
Medication which is a very complex area and can take time to get right, generally aims to replace the loss of dopamine and most do manage better once medication is right
The period around diagnosis and for a few months can be difficult while the right treatment is sorted out.
It is a chronic condition but in most is slow moving allowing time to adapt
It can take time but you and Sheena will find a way to live with this. It may be different to how you saw your lives but it is still a life worth living - 11 years on from my own diagnosis I can say that absolutely.
I’m sorry this is so long but I felt I needed to give you something to work with and sincerely hope there is something in all this that helps in some small way.
I send my best wishes to you both.
Hi Again @MartinK, Have a good read through what @Tot has written and absorb it, I realize it is a lot to take on board but thoroughly read every word, this lady talks a lot of sense and provides the compassion to your cause. I hope Tot’s post brings you more of what you want to hear. Take care and once again, keep us updated on what is going on with Sheena and your good self, hopefully when you next write it will bear fruit of good news.