I was diagnosed with PD 1 month ago and am devastated.
The neurologist diagnosed it and left me with the PD nurses who gave me booklets.
Saw my own doctor yesterday as neurologist had asked her to talk to me,
She had referred me to neurologist but was equally shocked at diagnosis.
I am in my early 60s and was made redundant nearly 3 years ago and was looking forward to travelling and taking up new hobbies.
However 1 month after I finished work dad had a fall and never walked again. So with the help of a sister helped care for dad as mam ‘was just lost .
Dad was diagnosed with Parkinson’s and we nursed him through the final stages of Parkinson’s and it’s consequences until he died a year gone February . It was horrific and the impact on mam is that she has blocked it all out and has now been diagnosed with Alzheimer’s.
So sister and myself are helping care for her fortunately she is still mobile and enjoys her time with us.
I have shared my diagnosis with family and close friends but not with mam as she associates PD with dementia after what happened to dad.
So I know it’s early days . I have tremors in left hand and leg.
My left foot isn’t working properly and suffer severe neck back and leg pain .
I am loathe to try the meds because of the side effects .
I live on my own and am fiercely independent and fear for my future. I certainly do not want my family to have to care for me the way we did for dad even though I would never regret it. Dad had a wicked sense of humour and we often were crying through our tears.
So sorry for this long. Story I am sure that as I get used to the diagnosis I will find a way to beat it.
Welcome to the Parkinson’s UK forum.
First of all; I’m really sorry about your recent diagnosis, it must be tough news to adjust to especially in light of the the information you’ve shared about your dad and your mum’s current fight with Alzheimer’s. We know that Parkinson’s affects everyone differently and can trigger a range of emotions which is why we are here to support you and reassure you that you’re not alone.
We have an entire ‘newly diagnosed’ section on our website which has information on how other people have coped with their diagnosis, the different forms of support available to you and an introductory guide to Parkinson’s which contains information about symptoms, treatments and living with Parkinson’s. You can find all this information here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
Our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis (particularly about medication as you seem to be really concerned about this) and life with Parkinson’s so do give us a call us on 0808 800 0303 or email us at [email protected].
I hope you find this information helpful.
Forum Community Manager
Hello Lynne973 after the difficult time you have been through and are continuing to go through with your mother’s diagnosis, it was no surprise to read you are devestated and fear for your future. However you said two things that make me think you will be ok, they are that you know it’s early days and once you get used to the diagnosis; you are entirely right the early days are for most a period of turmoil and mixed emotions but you will as you go through this steep learning discover it is possible to live and have a life with Parkinson’s even if not the life you saw for yourself. There is certainly no reason to give up on your dreams of travel and taking up new hobbies, so when the dust has settled a bit maybe you should start doing a bit of research and planning, it will give you something to look forward to and I don’t know about you but for me half the fun is in the planning,
If I may I would like to pick up on one other comment you made. I too live happily on my own and do not want my family to feel they have to be my carers. I wanted them to visit because they wanted to see me not because they felt they had to because I needed x, y and z. I decided that the best way to do this was to do what i could to make arrangements for my future now. To that end I drew up a Will arranged and paid for my funeral, set up Powers of Attorney for both health and property and put my name on the register for extra supported housing at some point in the future on the basis there could come a time when it is not tenable for me to stay in my flat. My family are supportive and are there for me but having such plans in place is all I can do to try and ensure they are not left to make all the tough decisions that may be my future. This may not be the right thing for you, or not the right time but for me it has meant that the family are clear what I want, that I have taken responsibility for my own future as much as I am able to and that for now and however long, i can continue to live my life independently as i wish. It may be something you worth considering. Do let us know how you are getting on. Best wishes.
Hi and welcome @Lynne973, your Dad had the right idea to make people laugh and to make light of his situation, the other thing is to be positive and adopt the attitude that you won’t let it beat you into submission. As Tot has said, don’t change your plans, travel and look at new hobbies because you have the disease doesn’t mean you change to accommodate it, it has got to work around you !! Tot has given you some excellent suggestions and you wouldn’t go far wrong doing what she has said. All the best.
My mother had Parkinson’s and I was diagnosed four months before she died. I was 55 and my Parkinson’s is so different from hers that I failed to realise it was the same illness. Mum was diagnosed at 80 and quickly developed dementia, I am similar to you left hand tremor and wayward left leg. However, six years on I am still not significantly worse, although I have learnt to use my sinemet regularly. I was resistant to medication at first, but I honestly do not have any side effects at all - perhaps give it a go and see if it helps?
I have been retired one year, and I do everything I want. I am very active - lots of gardening and social life - also lots of travel - looking after grandchildren.
Parkinson’s varies so much between people, don’t assume the worst case scenario, I have been ‘lucky’ with a slow progressing Parkinson’s - you may be also…
Hi Lynne973 so sorry to hear your diagnosis like you I experienced pd before I was told I had it I am 9th member of my family with pd though only one alive everyone else lived well into their 70s and with my late dad into mid eighties so you have to remain positive none of us had same symptoms though we did share some so your right to say in time you get to grips with it my philosophy is cross each bridge as it comes and if you can, t find the answer to something someone on hear probably will feel free to contact me any time if I can help you with anything I will welcome to forum
I was very sorry to hear your news.
But I must tell you… these early days are the worst, but it will all get easier, maybe better… but easier. I’m 40, and was diagnosed less than a month ago. Lots of symptoms including the same as yours. Day 8 on Madopar, early days. My neurologist said, ‘keep going… keep active’. Wise words.
And I also read on the forum recently… ‘I have Parkinson’s… but Parkinson’s doesn’t have me’. Be kind to yourself xx
Thank you everyone for the positive thoughts , kind words and advice .
Hi. My story is not dissimilar to yours. My dad was diagnosed with PD in his late 70s, by which time he was suffering with Parkinson’s dementia. After diagnosis his deterioration was rapid and he died aged 83. By then my mum was already showing signs of dementia. Her decline with Alzheimer’s was slow. She outlived my dad by 14 years during which time my husband and I devoted a lot of time and effort to her care.
A little over a year before my mother died, I was diagnosed with PD. was only 64, so much younger than my dad had been. My first reaction was to assume that my PD would take the same path as my dad’s and I would develop dementia quite quickly. But my neurologist reassured me on that point. Two years after diagnosis, I am leading a reasonably full life, even if I have had to make some adjustments to my lifestyle.
Thank you for sharing your story, I’m sure it will help many others who have experienced similar situations to you. It’s always great to see the outpouring of support to other members.