I am 59 and was diagnosed last September although I’ve had symptoms for at least 2 1/2 years. I’m on the lowest dose of Madopar 3 times a day.My worst problem is tremors.
I have been doing ok psychologically, being positive and exercising but suffered a real set back the other day when I read that I can only expect 5-10 years before deteriorating very badly. Are there any women on the forum who were over 50 at diagnosis and are doing okay 10 years on? I know everyone’s different but I could do with some hopeful role models right now,
I feel late middle aged women with PD are a bit invisible so it would also be good to hear about your experience of PD if you’re that age.
Hoping to hear from someone x
I was just a few month past my 52nd birthday when I was diagnosed, last Christmas I had the 13th anniversary of my diagnosis and I am most certainly, to use your phrase, doing okay (more than) ten years on. I live alone and manage all my needs. Some time ago I privately arranged two hours a week ‘help’ from a care agency and that is the only help I have - to me it made sense. I gave up driving when I left work (never enjoyed driving but it was part of my job) so these two hours mean it is easier for me to get to appointments, or go to places not easily reached by public transport, she will help me or do any jobs around my home and garden that need doing but it is very flexible and entirely on my terms. When she is on holiday I have no need of a replacement for example, I manage perfectly well. Obviously my Parkinson’s hasn’t been without some challenges in that time but here I am 13 years on, still standing, still doing what I want to do and still enjoying life.
I hope this helps you feel a little better.
Thank you so much Tot, that is really inspiring
Inspiring maybe but more to the point it’s true.
My mum is 54 and had the DAP scan two weeks ago. She has an appointment with the consultant arranged for the 9th March which we are are all expecting a PD. It is is very hard to accept and it is impacting myself and my dad, and of course my mum who is very anxious and worried for the future. Mum recently seen a physiotherapist who said that a PD is ‘life changing but not life ending’ and this has made my mum feel more positive. My mum regularly exercises which is great and something she has always done. My mum has symptoms such as dragging feet, freezing and difficulty to walk and get started and once she stands up. This is impacting her life and we are hoping once she is medicated she can get back to normal life and feel more positive. Regardless, it is so scary when you read others stories. My mum recently drunk alcohol at a family event as we always enjoy having a wine together and this made her symptoms so much worse!! Alcohol is the least of the worries but it is sad to think she may no longer be able to socialise and have a wine with her daughter. Any advice please xx
We just wanted to take a moment to welcome you to the forum. You’re sure to hear from our community members about their experiences with having the odd glass of wine, and you can also read previous forum discussions on different topics by having a search on https://www.parkinsons.org.uk Also have a look at our carer’s guide https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons as this might be of interest to you.
Please also make use of our kind and supportive advisers, available at our free and confidential helpline at 0808 800 0303. They are highly knowledgeable and ready to help with a range of Parkinson’s-related questions.
We hope these resources can be of some help, and again, we offer our warmest welcome,
I think I fit in that group of women. I was diagnosed in 2011 at the age of 55. I was in great health otherwise, no medications and physically fit. I’ve been taking Sinemet for 11 years and doing well on about 10 pills a day. I manage my own needs, care for my husband who has MSA, and spend a lot of time with my 5 year old grandson. My life is full - I’m on the “go” from 5am to 8pm with a nap most afternoons. My biggest challenges are wearing-off of medication and temperature regulation (I’m usually sweating or freezing). I quit work when I was diagnosed as I had a very stressful job. I think eliminating the stress and replacing it with exercise might explain my slow progression. I wish you the same! Iris
I was diagnosed with PD when I was 61, that was 6 years ago, but like you, I suspect that I was suffering from the disease at least 3 years pre diagnosis. I am on low dose of madopar three times a day too, plus a slow released pramipexole tablets in the morning. Six years on I’m still working full time in a very stressful, challenging job as an accountant, always working under pressure to meet deadlines. Most of the days I work overtime plus weekends. I go on holidays at least three times a year. Last September I went to Australia in November, and three times to the States. Basically I still do what I used to do although, in certain occasions more effort is needed. I go to the gym at least three times a week and I think positive. Enjoy the present and don’t think that because you have PD you need to give up living. My physiotherapist told me that she had a patient whom she had known for 18 years and she still lives independently.
We only have one life. We should try and make the most of it.
Good luck and keep in touch.
I was diagnosed aged 55 - I am now 65. I am still on a very small dose of sinemet (3 to 4 a day maximum). I am extremely active, gardening, visiting friends and four grandchildren under 6 who visit regularly.
I retired 4 years ago from a very stressful job with long hours. I think it kept me fit. I don’t have a tremor - but suffer stiffness and slowness. Please keep positive, It is the best way forward. I know as the years and the illness progress it will be harder, but that is something to face in the future.
Hi, I was diagnosed in 2006 aged 56. I am still going well . My main symptom is tremor, I take Ropinirole and Sinemet . I have my moments though if I am stressed due to a few things ganging up on me then I find that the tremor returns. I still drive although at the moment I am not doing it that much due to the fact I have hurt my right leg. I live in Devon but my Consultant and Nurse are in Charing Cross Hospital in London… I see friends both in Devon and Kew . My mantra is take each day as it comes. Most are good but with a few not so good thrown in . For even more positivity I have a lovely friend that I met in the PD group here which we no longer have due to the pandemic who is 96 and who has had PD for at least 30 years. You would not know she has PD. Wonderful lady, she still has all her faculties.
Best wishes Sharon x
Hello. Everyone has a different experience and story to tell - and some fabulous advice has already been shared in the responses so far. Here’s a bit about me - and a few suggestions too.
I was diagnosed at 49 years of age after nearly two years of minor, but increasing symptoms. I’m 64 this year. I lead a happy, fulfilling life despite being 15 years into my Parkinson’s journey. I have the support of an amazing family and my employer has agreed flexibilities that has allowed me to partially retire and still work part time in a job I love.
Life can be challenging and frustrating, I’m not going to pretend otherwise. I’m an optimist by nature but still have the odd self indulgent, self pitying days. Sometimes it gets to me that I can’t turn over in bed, can’t put on my tights without a huge effort and can no longer read my own handwriting. You’ll be surprised how much you’ll naturally adapt. I no longer write, but hey I’m a whizz on using the accessibility functions on my IT. I dictate instead - my new normal. It’s not great to admit urinary urgency is my specialist subject or that every journey I take is mapped against where the toilets are.
My family point out everyone has bad days for one reason or another, give me space to have a bit of a cry and then jolly me on to help me keep perspective. I’ve learned over time to be kind to myself if I have a wobble - and to work with the challenges and roll with them.
I know living for the moment sounds corny but I’ve found it works for me. I openly bury my head in the sand about the future. I know what’s coming, but I refuse to give it every day head space. I’m not going to waste the time on fretting. I have places to go to now, I want to play with my grandkids, go to the theatre or out for a meal etc. Worrying about something so nebulous is a negative energy I can do without.
For me personally, I find that the key to everything is to keep active and remain optimistic. It’s not always easy but positivity makes a massive difference to how I feel. Fatigue is an issue and I’d happily sit with a book for hours on end. The only trouble is I become stiff and slow. It’s like a catch 22 situation. My husband chivvies me on ( I need the nagging ) but I thank him for it. Keep going for it!
My biggest enemy is stress. Get me tired and stressed and I physically shake. Luckily I tend to take things in my stride and not much worries me. I recognise that we aren’t all built the same and if you are a stressy sort of person then maybe some mindfulness might help.
Happy to keep chatting
Hello there, I am writing this on behalf of my mum who is dictating what to write. I am 85yrs old and was diagnosed with PD in 1999 but I guessed before then that I had it. I managed well until about 2015 despite having many falls. “I wouldn’t give in”. I researched medication so when I went to see my consultant I asked for a particular drug. Exercise has been important for me, even more so after my diagnosis. I use to jog then I joined a gym. The worst fall was 6 years ago when I broke my jaw which I seem to have deteriorated more dramatically since then. I am now in a nursing home as I am immobile and need help with daily activities. My mind though is still lively!
Hi there, I’ve just joined the forum and read all your inspiring comments. Slightly outside the age bracket but wanted to contribute. I was diagnosed in 2011 but the tremor started in 2009 3 weeks after my 47th birthday, so 13 years on and just had my 60th birthday. I would say that the Parkinson’s lives with me, I don’t live with the Parkinson’s. I very much appreciate that as individuals we present in many different ways and deal with what is thrown our way as best we can. At the moment I am well medicated and very independent, there is nothing I can’t do. Please keep this chat going ladies x
How lovely to read your posts and different but positive experiences. I was diagnosed 6yrs ago at 59yrs, I also live on my own. I am taking Madopar 125mg 4 times a day recently increased from 3 x daily. This was a low point initially for me as I was worried that I was obviously getting worse. I do feel I am mostly doing well, I am able to do everything I need, (although changing the bed now takes me quite a long time!) I was exercising a lot but have had a painful shoulder so I am resting for a few weeks, but will get back to it as soon as I can.
It’s so good to hear all your experiences.
I hope that the replies to your post has helped you feel a little better as I am not the only one doing well more than 10 years on. My thanks too, to all who have responded to Jac63’s original post; although I didn’t have her fears about deteriorating badly after 5-10 years, it has nevertheless been lovely to hear that others are doing well and getting on with life. Long may that continue to be the case for us all.
Hi all, I was diagnosed at 47 I am now 62. I will say that in the main I feel I’ve had slow progression, staying at work until about 5 years ago.
I was a Community Occupational Therapist and believe it or not my special interest was Parkinson’s, yes go figure.
My very first symptoms were poor handwriting and a tremor in my right little finger.
I’ve had and still have some ups and downs but in general I think I cope pretty well, I do get very frustrated though at my slowness of movement, poor muscle strength, losing my train of though, sleep problems, episodes of extreme fatigue and driving a car with kangaroo juice in.
But then I can still ‘do’ things it may take me a while and some jobs that I never though twice about doing are only done successfully if I pick the right time like painting my nails, doing my eyebrows you strike while the irons hot and the tremor is virtually non existence that way you won’t poke your eye out or paint your hand with red nail varnish.
Life is not what I expected, but I suppose whose is, I never really had a great plan and there was possibly a reason for that.
Keep your chin up and keep happy, be content and accept that your life is still for living, personally I don’t believe in saying ‘ I’m going to fight this’ because it wastes far too much energy.
Although I was officially diagnosed in 99 I am positive that I had PD since the start of the 90s (despite a specialist telling me otherwise). So I was in my mid 50s when I contracted PD, and it wasn’t until 2015 that it deteriorated to the point where I had to go into full care. So from my experience that 5-10 years was closer to 20 years.
I was diagnosed 8 years ago at the age of 58. I managed to work up to 61, and thanks to the medication, I still enjoy holidays abroad and meals out etc. I have come to accept that I’m best not to drink more than 2 glasses Of wine. It can be quite scary otherwise! Good luck. X
I’m female aged 71 Diagnosed September 2015
Yes Parkinson’s is life changing, it will be challenging for all of you, especially your mother in the years ahead.
Everyone Parkinson’s journey is different, the outcome is the same, To live a full and happy life, as best we can,
Don’t let this awful disease stop you doing anything you wish to do.
It’s your life,
I wish you mam all the luck in the world
Thank you so much for your reply. I’m planning to retire next year to concentrate on staying as well as possible. It sounds as if you’re having a great retirement.