My mum has just been diagnosed with PD, age 61. I’m a nurse and started noticing signs 2 years ago. It’s taken this long to go through the motions for a formal diagnosis. I thought that seeing the diagnosis on paper wouldn’t be that big of a deal because I knew what was coming. I was wrong though. I’ve found it difficult and I’m scared about the possible future. I know PD is different for everyone but being a nurse who has cared for those with PD makes me very aware of how it can go.
Hi @KerryF and welcome to our friendly forum. I’m sorry to hear that your mum has been diagnosed with Parkinson’s. It’s completely understandable that, with your background, you can think about what you’ve already seen and feel scared about what that could mean for your mum and for you.
You’re right that the reality of getting the diagnosis can shake most people up no matter how prepared they think they are. You’re also right that everyone experiences Parkinson’s differently and as our members come to say hello they will talk to you about their own journeys.
As a nurse, you already know how important is to take care of your own physical and mental health so that you can support others. Our advice for Carers here: Caring for someone with Parkinson's | Parkinson's UK in the Newly diagnosed with Parkinson’s section could be very useful.
Welcome again and do let us know how things go for the two of you
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Welcome to the forum.
You are in a position that is different to that of many people who come into contact with Parkinson’s in whatever capacity but which is probably more common than you think.
As I see it the position in a nutshell, is that you do know about the condition because of your working background but this does not prepare you for the emotional impact
when it actually hits closer to home. This is happening to your mother, affecting the whole family who now have to stand by (figuratively speaking) and watch as the Parkinson’s takes its course knowing there is no cure. That is a perfectly normal response. Knowing about Parkinson’s does not make you immune to the huge emotional fallout that often occurs when an individual or someone close to you is diagnosed.
The other side of the coin is that it puts you in a strong position to help and support your mother since you have an understanding of Parkinson’s right from the start. With your background you will also know your way around the health and social care systems and believe me, that is a major plus.
What I think you need to do now is exactly the same as the advice would be if you were writing this post on the forum as someone newly diagnosed. Stop, take a breath and give yourself time to adjust and adapt to the recent diagnosis. You know the condition moves slowly in most people and you have no reason to think this will be any different for her. You will know too that many of us live well for many years without too much interference from Parkinson’s antics. I also think you need to remember that those patients with Parkinson’s who you cared for in hospital were there because they were ill in some way, so you were not seeing them when well and just getting on with life.
I wanted to say particularly that the issue which seems to cause most anxiety to newly diagnosed is the unknown future and the fear that can bring. This is perfectly understandable but the fact is much about the future is unknown to anybody and everybody. What Parkinson’s does is bring this issue to the fore and it sounds somehow worse than it is for anyone else. That’s not true, all it really does is make you more aware of it than you otherwise would be.
I am sure you will be fine once you have given yourself a bit of time and the emotion so tied up with your Mum’s diagnosis has diminished. I am not suggesting this will make everything in the garden rosy, of course not, Parkisnon’s is a complex condition and will certainly bring many challenges; what it’s not, as you will know when able to think more clearly is a one way street down a big black hole.
I hope this helps a little.
Thank you so much for your messages. It’s a reassuring prospect to feel that there will be support through this network. I really appreciate it and it does help.
I can see it will be important to give myself time and space to let this news sink in. Then I will be stronger for my mum.
There must be so much knowledge and experience here and it’s supportive knowing I can draw on it. You make some very good points.
Thank you again
You are more than welcome KerryF. You might want to take a look at other posts on the introductions and persoanl stories category and you will see how common what you are feeling is and the sort of advice generally given by forum members. You will find it suprisingly consistent on both sides - I know that I frequently write things I have written several times over in my replies - and that may help you adjust and accept your own feelings as normal and you will come out the other side as we all do in one way or another - and that I have definitely written dozens of times. We’re here if, as and when needed.
I wish you well
Hi kerry, I would just like to confirm something to said in her reply to you. When my husband was diagnosed, at age 59, I had just retired after 40years as a nurse. I had looked after many people with pd, but always when they were unwell or in elderly care settings. I had no idea how he would be affected from diagnosis as time moved on. Your knowledge of health and social care settings will help you and your mum as time moves on and different help or advice is required. I quote tot to my husband a lot! Her positive attitude helps both me and my husband. It’s not a black hole at all, easy for me to say of course, but I have looked after people whose condition, even in older age, remained static and a reasonable quality of day to day life was evident. Of course I have seen others with more challenging symptoms, however I use my knowledge to help support and reassure that we will navigate this together as a team. There is lots of advice and assistance out there that you can access to help your mum if and when she needs more input. As a loved one of course, we are not immune to having a bad day, especially if we see our partner or parent suffer a little. That’s where self care and support for you also become important. We are now 8 years on… He has just gone out shopping as I write this, medications taken, and ‘on time’, secure for a few hours. It’s a change to a life ahead, but as tot says, none of us know what’s round the corner. I’m sure you will feel less anxious as time goes on. Lots of advice out there from parkinsons UK, this forum is filled with stories from others living day to day with the condition. Grab all the support you can. Best wishes to you and mum
Welcome i was diagnosed just over a year ago and was so relieved as i finally learnt what was wrong. I currently take co careldopa and propanelol. I am now able to do more ie gardening watching my rugby team play seeing friends. There is so much support out there which is great. I have also taken up nordic walking which is a big help too.
I am sorry that even though you strongly suspected the Parkinson’s diagnosis, receiving the formal diagnosis has been hard. Perhaps you can have contact with specialist neurological nurses who would hopefully give you some good news about well medicated Parkinson’s working for many .
2 years to obtain the diagnosis is minimal, many seek repeat referrals before finally being taken seriously.
I realise that you are probably still in s state of shock but I would hasten you to quickly apply for PIP benefit for your mother. I say this because PIP (previously called Disability Living Allowance) is the only benefit that has the mobility element attached to it. No- one over age of 65 (age may have increased now inline with pension age) can obtain this benefit they are not eligible. If the benefit is accessed prior to 65 it is very rarely taken away.
My urgent point here is my husband was diagnosed aged 66. We knew nothing of benefits etc. he is now 80. 6 years ago Sepsis came calling snd he is now a fulltime wheelchair user. Having to purchase a second hand wheelchair adapted car is a massive expense (they are thousands £s more expensive than the unadapted equivalent). My point being apply soon do not leave it too late - you may-not need it immediately but having it keeps the doors open for the future. Incidentally if the first neurologist my husband saw had listened and tested my husband would have been diagnosed aged 63.
Parkinsons UK helpline has benefit information.
So apologies for jumping right in but its important. Very Best Wishes Jane
You made some excellent points re PIP. Just to clarify PIP does now go with your pension age, I know this because mine was reassessed a few weeks before my 66th birthday when I started to claim state pension. I can continue to receive PIP at the current rates (in my case enhanced rate care and standard mobility) but if and when my mobility needs change I can’t be assessed for the enhanced rate mobility - instead I would have to apply for Attendance Allowance. To be honest it seems a little unfair to me. Attendance Allowance at the enhanced rate is the same as my PIP care component but there is no mobility component so at the point where my mobility needs have increased there is no equivalent mobility component with the Attendance Allowance. Should my mobility needs increase it doesn’t necessarily mean I can’t get out but taxis etc that I can currently pay for out of the mobility component will be an expense to my Attendance Allowance so I will be worse off. If anybody can explain to me how this makes sense please do, because it has never made sense to me. However ‘them’s the rules’ as they say.
Thank you. How did you get on with starting Co-careldopa? Fortunately my mum is very active and still managing well with that. Physical activity is one of the best treatments isn’t it?
Hello KerryF … I started on 1 pill a day for a week [Co-careldopa]. Then 1 pill twice a day for a week. Then 1 pill three times a day for a week. Then 2 pills 3 times a day for a week. I’m about on week 6 now.
I have not had any trouble taking them at all. I think I have improved since I started on the medication.
Yes totally frustrating is the PIP benefit being the only benefit giving access to the mobility scheme. Guess it’s all about ‘as far as the government is concerned’ that only school & work age people need access to cars. It’s a whole new topic to describe the misery of trying to use trains to get to hospital appointments etc to say nothing of personal wellbeing and mental health in being able to choose. Oh yes old and disabled there is no choice . Compared to a mother having a child with ADHD being able to claim PIP and acquire a mobility car to take her primary school child to school just adds to the frustration and feeling of being discriminated against.
Yet another post would be how the car and auction companies have tied up the access to buy used ex mobility vehicles too and how much more expensive they are !
Keep well Tot
Definitely improved to start with am seeing neuro nurse next week to discuss amatadine as well i have a long list of things to discuss!
Hi Kerry. I was diagnosed 14 years ago and was immediately put on Stalevo by my neuro at the National Hospital for Neurology and Neurosurgery. My medication has not changed since. Your mother may want to contact her local PUK support group.
I’m not absolutely sure but I think PIP may be the only benefit giving access to the mobility scheme.
To be honest Plus1, I have a problem with the whole emphasis on care, although I do accept there has to be a way of sharing out the resources, including benefits, so you cannot avoid the labels to a certain extent,
To me there is a major difference between PIP and Attendance Allowance. PIP does in its title at least acknowledge people can be personally independent and that the money is to cover additional costs incurred because of a disability. Although the outcome of a PIP assessment is based on so called care needs, it has always felt to me to be a positive benefit, one that allows me to meet the extra costs and where I can still be seen, in theory at least, as an individual who is just getting on with life doing things anybody would do. It has questions based on how you manage everything from food prep to personal hygiene and you describe what you actually do. Attendance Allowance on the other hand is assessed in a subtly different way. It’s not until page 12 where questions about care needs are asked and they take the form of ‘do you have difficulty in or do you need help with, and how many times …do you need help. The questions start with tick boxes and although there is space for optional additional info, there is no direct need to describe how you manage.
Also the questions are very much based on personal needs, eg personal hygiene, dressing, getting in/out of bed and not things like food prep. It seems to me that Attendance Allowance is designed for those who are more dependent if seen in assessment terms, even if not actually in receipt of care. Why can’t I request a review of my PIP if my mobility has deteriorated and be awarded the enhanced rate if I meet the criteria and be allowed to continue to claim it because I still do the how do you do x, y and z questions of the PIP form that recognises I am still independent and be forced into applying for Attendance Allowance which in my view give greater weight to dependency. The same reasoning could apply if on standard rate PIP care component - once in receipt of state pension you can only claim the rates you are on at the time you start to receive state pension. There is no way to move on to the enhanced rate and if you request a review it will be by application for Attendance Allowance.
I know that’s how it is and that’s that; it doesn’t make any sense to me but it feels like once you reach state pension age you are basically written off in independence terms and an increasing number of assumptions are made.
This is of course only my own personal view but as I said above, if anybody can enlighten me as to how this is fair I would appreciate it - maybe I’m missing something
Just sending love and support from a stranger