My consultant informed me I am now going into the advanced stage of PD having only been diagnosed 3 years ago with mild symptoms. Now I can barely walk with a walker . I left work last November as I was struggling , I’m currently on sick leave waiting for my ill health retirement decision. My consultant wouldn’t agree to my renewal of my driving licence. I have become dependant on my 20 year old daughter who has learning disabilities and doesn’t work and lives with me . Together we make a great team , helping each other . But this is the last thing I want for her . I have anther daughter we see rarely as she’s busy with work /partner and my ex husband comes around to us a couple of times a week to take us shopping
My consultant has referred me to another for a second opinion and rushed the appointment through for the end of June , there maybe some tests involved then I go back to discuss the “plan” which he’s talked about fitting a syringe / pump
Now I’m petrified , when I did all the reading at the beginning I remember reading that most people don’t get to stage 4?I feel I’ve been literally told that I’m dying and it’s more imminent then what I thought , I can’t stop crying , I spend a lot of my time researching , thinking what am I doing that is causing the progression , did I not exercise enough ?
I sleep a lot but then take an awful lot of medication . I feel ill all the time and where as my mood wasn’t affected I’m now
feeling /being negative with my older daughter and my ex , they haven’t the time for me and when chatting to my younger daughter she and her dad have clearly had conversations about him moving into the flat (after I’m gone )to look after her. The 3 of them are planning a visit to their dad’s family which will involve them gone all day, I’ve been reassured that someone will walk the dog,
I’m just frustrated and don’t now how to steer myself through this thank you for taking your time to read this.
Hello @julie63, thank you for your post. We understand that the news that you’re going into the advanced stage of Parkinson’s will be difficult to process, and you’ll probably have lots of questions about what this means for you. It’s okay to be feeling a variety of different emotions right now, including frustration.
We’re here to help you. We are glad you’ve got the support of your consultant and healthcare professionals too. It’s good that you’ve got your daughter living with you, and you have the support of your ex-husband, who comes to help a couple of times a week to help with shopping. However, we know asking for help from people you love can be hard. We’re also here for your daughter if she ever needs support or someone to speak to.
We are at the end of the phone to listen, answer questions and provide information and advice about all aspects of living with Parkinson’s. You can call us for free and speak to our trained advisers, including specialist Parkinson’s nurses: 0808 800 0303. We are open Monday to Friday: 9 am to 6 pm and Saturday: 10 am to 1 pm.
We also have information which might help with your questions on our website about advanced Parkinson’s and what the different stages mean: Advanced Parkinson's | Parkinson's UK
Would you consider contacting the adult social care team at your local council and ask for an assessment? This could take a while but they might be able to signpost you to local supports. They will assess you but also your daughter too, in terms of what assistance they can give you. Would you be open to having some home care come in to help? Or a cleaner or is there a local community transport system nearby that offer trips out or a companion service could set up a call once or twice a week etc. Even just little things might free up a bit of time for either of you to do other things and a different routine.
You sound very able mentally and a very caring mum. Maybe you can chat to the second consultant about what advanced stage means? It could mean that although you progressed faster through the earlier stages, is there anything that can slow down the next stage, a fast progression through this stage might not be inevitable.
Until the appointment comes, try to concentrate on the things you can do and hopefully your work stuff comes through as well. Above all, mind yourself.
I see you have already received some replies which I hope have helped you a little with some suggestions of things that may help.
Your post was not an easy read and on first reading it was hard to see what I could add to those replies that would make any difference. Reading through it again however two things struck me very forcibly. First that you are clearly very stressed, understandably so but it is probably exacerbating all your symptoms and making the whole situation feel beyond hope. The second thing is you have embarked on a huge guilt trip wondering if there was something you did or didn’t do that has caused this apparently rapid deterioration making you feel like the only road you are on is the express highway to the pearly gates. I won’t insult your intelligence by suggesting there are any easy answers, I don’t know what your medical status is and even if I did, it wouldn’t be for me to pass judgement. All I can do is write as I see it and you can then take as much or as little from it as you like
The first thing to say is that I have been labelled as ‘Advanced Parkinson’s’ by my medical team for a long time. It is not how I see myself and I take little notice of it, I just get on with my life as best I can. I know of the 5 stages of course, but rightly or wrongly see them as a ‘medical model measure’ for eg how far along I might be in the medication track. Labels that may be useful to them but don’t matter to me. Exactly the same as at the beginning I was told that at 52 I was young to have Parkinson’s/’ In the first place there are plenty younger than me who are diagnosed and second I may have been at the younger end of the age at diagnosis and that may be of interest statistically but what difference did that make to me? Absolutely no difference at all that’s what - it was simply a fact I can’t change. The point I am trying to make probably not very successfully is it depends how you see or interpret what you are told and you can choose to continue to see it in the stark view of your future or you look to redefine it to give some hope. That doesn’t mean you go into denial rather to be effective you need to be almost brutally honest with yourself,
***This is one description of stage 5 ‘***Stage 5 is the most advanced stage of Parkinson’s disease. Advanced stiffness in the legs can also cause freezing upon standing, making it impossible to stand or walk. People in this stage require wheelchairs, and they’re often unable to stand on their own without falling. Around-the-clock assistance is required to prevent falls.’ Is this how you see yourself because it’s not the person I see in your post. Maybe you could have done more of xyz to slow the progression but you will never know, you did what you did and you are where you are so why waste energy on guilt and what ifs you can’t change. Concentrate instead on what you can do now to help yourself,
You are clearly in a difficult place right now with a pending il health process pending at work, a second opinion (I’m not clear why), the consultant saying you are advanced etc. It’s a lot and will be stressful but your brain is powerful it can easily mqke everything negative but equally by looking at things a little differently that negative can be more positive. Not easy but surely worth a try - what have you got to lose.
