Hi I have recently been diagnosed and am feeling lost. My character is to be in control, now i feel totally out of control time passes easily and I don’t seem to achieve anything. I retired from work beginning of may at the age of 66 and so my world is inside down". All I wanted was to do the garden with my husband and enjoy time. Now I am not capable of getting around the garden. Hump what to do or
Hello and welcome Pammy,
You dont mention if you have started any medication yet. If you haven’t or have, it may take a while to get the dosage correct. You may well feel differently when the meds are right. You will have good and bad days, so the good ones are the days to seize an opportunity. You may have to adapt and break bigger jobs into smaller pieces. Could your husband make or customise a little potting bench and you could do some pots or hanging baskets? What about a raised bed, start with one and fill it with plants that appeal to you. Treat yourselves to the comfiest table and chairs, sit out and watch the wildlife. Set up different areas where you can sit at different times of day and weather. Try to concentrate on everything you can still do, of which there is loads. You are in shock and this is understandable.
Yes, it’s a shock to get such a diagnosis. On top of that, you have recently retired so there are a lot of changes going on in your life. It’s stressful. Anyone would be feeling like things were upside down. @TheLippyOne has some good suggestions and I’d agree that concentrating on what you can do and not what you feel you can’t do now is a great approach. With treatment your symptoms will become less bothersome, so for now patience and trust in your medical team are both important. Once you have your medication sorted and a new routine figured out, you’ll get back some of that control you think you’ve lost.
There’s some great information on our pages for newly diagnosed people: Newly diagnosed with Parkinson's | Parkinson's UK. There’s even a section that your husband will find useful.
Our Helpline is a good resource for advice and support. Call them on 0808 800 0303 when you’re ready.
Please take care and jump into the forum as soon as you like. We’re all looking forward to seeing how things go and what your new routine looks like.
Forum Moderation Team
1st rule of PD. Be kind to yourself.
2nd rule. You are still essentially the same person you were the day /week /month you were before diagnosis.
Life with PD goes on but it is different. I’m a 69 Granny going on 70. Diagnosed 2016.
If you feel tired and need a break. Sit down for a minute or two. Our batteries need recharging more often! But we can still do loads of stuff. Just at a different pace.
Hi @Pammy1, my mum has recently been diagnosed too and she is also sad that she can’t be in the garden like she used. Apart from myself, she is all alone too and I feel lost as I feel as though I can’t help her
Probably can’t actually be much help - but just wanted to say I totally understand. I am 66 tomorrow - diagnosed in November - and retiring at the end of the month. My emotions in the last few months have been all over the place - including anger that i felt robbed of my retirement years - BUT, i have come to realise my biggest problem was my negative thinking - I can still do all I wanted to do - maybe a bit slower and with more rests - but i have known a lot of people who didn’t make it to 66 for various health reasons. Give yourself time to adjust - it’s a shock - be kind to yourself.
Hello Pammy1 and Helen3
My apologies, this is quite a long post but I hope helps a bit if you make it to the end lol.
Pammy1 you have already received some excellent replies, not least one from Helen3.
I have seen both your posts and I am replying to you jointly because although your circumstances are different there are many overlaps so it might be useful for you to read both sides as it were.
To come to Pammy1 first what you are feeling is very common. What you need to try and understand and accept if you can is that many of us with Parkinsons run a whole mix of all sorts of feelings and emotions when first diagnosed and all good, bad or indifferent are valid. It is simply a part of the process of adapting to the diagnosis and that will happen. I can’t tell you how or when because it varies from person to person and will be unique to you - as so much about Parkinson’s is. Up to a point Helen3 the same applies to your mother but her situation is a little different because she feels she has been forgotten and left to manage alone and for you it is hard to see your mother like this and in turn it is pulling you down too. Sadly I can’t disagree with Peter1951 (who replied to your post Helen3) because what he says is the experience of far too many people affected by Parkinsons whoever they may be, and to tell you otherwise would only be doing you a disservice. There are several posts on the forum about inconsistency in services and it does seem to be something of a postcode lottery.
Living a good life with Parkinson’s is possible for a good many years because it is slow moving in most and so you can adapt and adjust as you go along. Pammy1 it may not be the life you saw for yourself but you shouldn’t give up on your plans and dreams because there is often a way you can do these things if perhaps a little differently. Again Peter1951 is correct concentrate on what you can do and don’t dwell on what you can’t and take the opportunity to investigate new things you never know what you might find that gives you a whole new outlook.
Keeping active is key and exercise is known to be beneficial so if you can find something local to get involved with so much the better because it will not only give you some exercise it will also provide the start of a structure - outside of work for you Pammy1 and outside of the home for your mother Helen3 - the social side of which may lift your mother’s mood. Search out things like seated exercises for your mother or perhaps not so obvious something like a singing group - helps with breathing, posture, voice volume and it’s fun. If you see your mother having a good time you will feel better. Maybe she could attend a day centre - contact your local council for an assessment. I realise this doesn’t help the lack of info problem but it will hopefully lift her mood a bit. To both of you I would say if getting out to exercise is not practical at the moment youtube has a lot of good videos that you can do yourself at home and some are classes in real time which is the next best thing to going to a class or group. I would encourage you to look at the U3A https://www.u3a.org.uk/ who have branches all over the country with loads going on.
Helen3 as you appesr to be in an area with a not particularly good service you basically need to start jumping up and down (figuratively speaking) and shout long and loud to anyone you can get to listen. If you know who your mother’s consultant is contact his or her secretary and find out what is happening - always follow up with an email or some kind of written record of what was said by whom so that you have a chronology you can refer to if you need. If you don’t know who her consultant is, contact the neurology dept and get a name. If you know who her specialist nurse is contact her, if you don’t the Parkinson’s uk helpline should be able to find out who this is. AgeUK and CarersUK are both good resources and may be able to help.
I wish I could give some easy answers to both of you but living with Parkinson’s is not like that but nor is it the end of the world; you do however need to give yourself to get used to the diagnosis and find a way that suits you and, more often than I would like you have to be prepared to stand up and be heard.
I do hope at least some of what I have written helps a little, I wish I could do more.
Best wishes to you both.
@Tot thank you so much for your reply and your kind words, it helps knowing that you have to push the consultants if you want answers! I’ve looked into some local groups on here for my mum to join so hopefully I can get the ball rolling for her to be happier. Once again, thank you