A Good Parkinson's Care Plan?

Hi! I’m new here and my name is Elizabeth. My husband (now 77) was diagnosed with Parkinson’s during the Pandemic.
We are Spanish Residents.
I am looking for information to help me to understand what a good ‘Parkinson’s Care Plan’ looks like?
In simplistic terms: who, what, when and where? Can anyone help please?
I know everyone is different but the principles and the who, what, when and where should follow best practice. Can anyone help please or point me to where I can find good quality information and guidance? I want to be able to judge if we are following a good care plan and how I can work to improve it. Thank you in advance.

Hi Eli,
OK, as you will find out, everyone has different experiences with Parkinsons.
Although the basics are the same, it is just weird how it seems to affect different people in different ways.
That being said, of course there are a lot of people who will have similar experiences, however what works for one doesn’t mean it will work for your husband.
Also remember that medications affect people in different ways as well.
As you know this is true for all medication.
This forum is really good for information and guidance, as there will always be someone that is going through, if not the exact same symptoms, something very similar.
The moderators are also really good at pointing you in the right direction.
Unfortunately, it is a bit of a hit and miss situation at times, but you will find what works best for your husband.
Honestly don’t get disappointed or “uptight” that something doesn’t work well, you will find methods that will work for him.
Both you and he, in the long term, are the best people to find and apply a good care plan.
Please just ask on the forum anytime, and someone will try to help.

Hi Clive, Thank you for your reply.
Maybe I need to be more specific in my questions, because we can’t find what is best for my husband if we don’t know what we are looking for. We need a ‘Map’.
For example, the ‘who’ should be involved might look like this…
Who should be involved in the care plan?

  • Patient
  • Carer(s) / Family members
  • Family / general practitioner (consistent / locum?)
  • Movement Neurology Specialist
  • Parkinson’s Nurse? (we don’t have access at present)
  • (Physio/ movement?) therapist?
  • Exercise therapist / Personal trainer?
  • anyone else?
    The question marks are asking for clarification.

Drugs?.. for…?

When? and when to change?
How often… ?

Does it make sense that I am looking for some guidance on this? Otherwise how do we know what we have now is any good, and how do we build and implement the best plan for him?
Any thought and input that answers some of these question would be very helpful.

I have just seen your latest post Eli but I think the reply I had logged on to post still applies. I would add that the Parkinson’s care plan it seems to me is a very fluid thing and may not be formally written up in the way you might normally expect - which is why I was saying it is a different kind of relationship. It is true however that exercise is considered important and information can be found on the Parkinson’s UK website. This is what I had written in response to your first post.

Hello Eli

Although I can understand your concerns I agree with CliveV. It is important, I think, that you have regular contact with your consultant - for me that is seeing my consultant and specialist Parkinson’s Nurse once a year each, 6 months apart with the option of being able to contact either of them in between if needed - but over and above that and as CliveV has suggested, you and your husband are best placed to recognise when and how things are changing.

One of the hardest things I had to adapt to on being diagnosed with Parkinsons, was the different type of relationship you have with your medical team. Pre diagnosis on the rare occasion I went to my GP, he would diagnose the problem, give me appropriate advice or a prescription which I would follow and the issue would resolve. This is not the way Parkinson’s works. It is more like a partnership. Most of the time the medical team only have what you tell them, your answers to any questions they may ask and what they observe. This then contributes to a plan of action which is fully discussed, options considered and then finally agreed by all. Living with Parkinson’s is not an exact science and again as CliveV has said, there is often a degree of trial and error until the best course is found.

As you are maybe beginning to realise, there is not a simple way to answer what appears to be your very straightforward and sensible questions. However there are ways to make this quite abstract way of care planning more real and to feel part of the process. The most common way people do this is to keep a diary of symptoms and their impact. It can be as simple or detailed as you like. You may wish to concentrate on what appears to be a significant change or one that considers symptoms more regularly and notes both motor and non motor symptoms. The information recorded in diaries can be useful material for your medical team when you see them.
I personally finding the keeping of a diary in this way boring so it doesnt work for me. What I do is keep a small pad handy and jot down key words as and when they occur to me - quite often there are several weeks between a keyword being added. Then before going to my appointment I will look over these notes and see if they come together in some way thereby turning into something I want to discuss with my medical team. That works for me.

Try not to get to concerned about having a fixed route as it were. As time goes on you and your husband will find you grow in confidence in how you live with and manage Parkinsons in whatever capacity; the questions you are asking now - how, what, when and where - you will find are ones you ask of yourself as the condition progresses and will guide you as to the right time to contact your medical team, GP or any other significant professional thereby starting the process for the care plan to be amended if appropriate.

I am aware this does not answer your question in the way you had perhaps hoped or even expected but despite this I hope I have helped a bit.

This is my 2nd attempt at writing – the first one accidently got deleted – just as I was nearing the end!
A care plan -what’s one of those? I will try and not be negative – sorry! I have had the illness diagnosed for about 20 years so a speaking out of my experiences. I haven’t seen a consultant for over a year and don’t have a Parkinson’s nurse. My “care plan” is ME.
MY advice to you would be DON’T PANIC – life goes on but expect to make changes when needed. Keep a diary of your life – very tedious but essential when you are trying to explain to a consultant how things have been. It can be kept simple. Topics could be food intake or when you take the medication, with a note of when it runs out and any side effects. I have found that it can sort out misunderstandings as your diary is in black and white – facts!
Let yourself grieve – if that’s how you feel. You can read many feel good stories on here and in the magazine but we are all different – we aren’t all supermen and women – we are what we are. I would say try and be positive. Be aware of the people around you and how they have reacted to the diagnosis. There will be lots of decisions to be made in the future and your immediate support should be aware and have input.
Hope this helps.

Well said !

Hi Eli,
Please listen to what Breeze and Tot have said.

Please don’t believe everything you see on the internet, a lot of it is total bullsh*te by people who tell you what they heard from someone whose friends’ friend knows someone who has it.
Remember the experts in any disease are the ones who have got it and are dealing with it.
You are going about this as if you are cramming for an exam. Please don’t.
And yes all your questions are pertinent but the most important are those that love and care for him.
You family and you are the most important.
Remember that your GP is just that a GP , his/he knowledge of RP is usually very general, but they are great for your standard, flu, bacterial and viral infections etc.
Your neuro is who you and your husband should be listening to.
Please take it easy and the two of you will find out in time, and yes there will be trial and error as with all things, and you will find what works the best for both of you.

Hello Eli
Like you I am the wife of a Parkinsons sufferer, he was diagnosed 12 years ago and is now 80.
I am unsure if you mean you are Spanish living as residents in the UK or you are Residents of Spain, obviously each country will have their own policies and methods of care, but will assume you are living in the UK.
Firstly for all things Parkinsons you have come to the right place in that Parkinsons UK has a wealth of knowledge to help people affected and those caring for them.
Secondly as others have very clearly stated Parkinsons does not follow a given path and therefore there isn’t a given care plan to follow.
The NHS does offer you the choice to choose where you are treated. You can research hospitals with the mark of excellence for the treatment of Parkinsons disease and ask your GP to refer you there.
Seek A neurologist specialising in the treatment of Parkinson’s. Once registered with one expect to be seen once or twice a year. Hopefully if they are a hospital of excellence there will be the provision of a Parkinsons nurse, similarly you might get to see him/her once or twice a year.
It is good to seek exercise and possibly physio, do not expect these to be provided.
Parkinsons UK should be able to tell you if there is a local support group close to where you live (in the UK) they are often great support networks.
Parkinsons goes at its own pace and direction with each person and as such we have to adjust our lives around it as we go. We were told approximately 10 years ago to expect in the future for Parkinson’s to become an umbrella title for maybe 20 different diseases that are now, through research, becoming recognised. Each of course again following its own projectory. Best Wishes Jane

Hello Everyone and thank you very much, for taking the time and caring, to reply to my request. I really appreciate it.
I take on board everyone’s comments and will incorporate the advice into our plan.
Many thanks again.