Hi everyone, I’m Emily and I was only diagnosed in February this year. I’m only 51, so although not technically early onset it feels very shocking and early to me. I currently have mild symptoms, can do everything I used to, the only difference is I feel like the future stretches out very scarily as the only certainty of PD is progressive decline (just how fast is the unknown). I’m sure everyone diagnosed with PD feels similarly. I really love my life and I’m a really happy person, so it’s unknown territory to feel gloomy and fearful about my future. So what I’d love to have is advice from those who have had Parkinson’s for a while, especially if they were diagnosed early like me actually (I mean if I have ‘10 good years’ I’ll only be 61!) - and also would love to know if you could have your time post diagnosis again what would you do/do differently. I’d very really grateful for positive advice that will help me cope!
Great question Emily,
I’m 7 1/2 yrs into this journey (diagnosed aged 42) and would make a few comments (I’m sure others will add more)
Balance!!!
Make sure you know about the condition and be well informed about medication and how the different types may help you, and some important warnings associated with certain types.
But…don’t overhwelm yourself with too much information and don’t forget that Parkinsons isn’t the most important thing in your life, although it can definitely feel like it sometimes.
Try and connect with others of a similar age ideally in person but virtually if not. There are some helpful facebook groups out there, but again be cautious about everything in your life being about PD, and also aware that some groups can sometimes leave you feeling quite negative.
I can’t help but mention exercise - I think there’s little if any doubt that it is helpful for people with PD, and whether it actually helps slow progression (which has been suggested), or whether it just helps us stay mobile and healthy, in the end I don’t think it matters. Ideally find something that you enjoy and maybe something with other people if that helps you stay motivated.
Mindset - you said you are a very happy person and love life - what a great place to start from! Do everything you can to maintain that, but also be aware that there will be difficult times to come at some point. I read something recently that a very progressive Parkinson’s treatment centre tailored their services very specifically to the needs of those diagnosed at a younger age, which resulted in the nurses ending up being more like life coaches for this group of people. I think the importance of this type of more mindset and psychological guidance is vastly undervalued, with too much focus always being on the physical needs (that comes from someone who has been a nurse for nearly 30years!). It is and will be our mind that helps us get through the difficult days.
Try to find that sometimes elusive balance of thinking/planning/preparing for the future and the same time forgetting about what the future may bring and just enjoy the moment, carry on enjoying life!
Take care and keep asking questions and seeking support when you need it.
Nick
Thank you so much @buzbyc this is so useful to me. I do feel that Parkinson’s is my new ‘hobby’/obsession although it’s not one I have really chosen!!! Almost every time I dip in for some research on Parkinson’s Org website or some other official website (I never dare google anymore after reading so much bad stuff) I invariably come across something really upsetting to me about what my future might hold. The balance is hard, as you say. It’s the challenge. I really think I need therapy to get my head around it and if anyone has suggestions on that I’m all ears too!
So far the most useful thing I have found is Brett Harvey’s film I made a film about my Parkinson's diagnosis - YouTube
Hi, The first thing I tell people is to not change a thing about the way you’re living, we are all different in the way PD affects us. Hopefully you will be a slow burner and that you will get more than 10 years of good living. You will know when you can’t quite do something and you will adapt your life accordingly. I’ve had the disease ten years(from age 58) and i’m still here to tell the tale. You can look at doing exercises by looking up PD Warrior, this will give you an insight into ways you can help yourself by being active. With PD it is always best to go with a positive attitude and if you’ve got a tremor make light of your condition like what I did/do. There’s no need to feel gloomy/down in the mouth about it. Just remember this little phrase, You have Parkinson’s, it doesn’t have you, this is something I picked up from another member who writes on here, @Tot. This lady gives out good sound advice to people such as yourself who are picking their way through this minefield. Take care, stay safe.
Les
Thank you Les. And yes @tot is already a legend to me, she’s said hi when I first came on the forum. I like that phrase. I’m doing yoga every day, swimming and biking too. And I’m learning transcendental meditation. Getting my tool box sorted!
Good on you Emily, now I must get on the treadmill so to speak & get some exercising as I haven’t been throughout the pandemic, no one to blame but myself !! Have a great weekend, stay safe.
Les
Hi Emily
I’m Karen and was diagnosed 5 years ago when I too was 51. After the initial shock I asked my consultant what he would say if I was his wife…he said take the drugs I prescribe and live your life and I will keep you like this for 20 years. So far so good. I kept a diary which helped. I personally don’t enjoy group meetings and googling is not good. Stress is massive and to be avoided if possible. I took up tai chi which helps mentally, physically and emotionally. Be kind to yourself, get rid of people who sap your energy.
It is tough facing the unknown but we all do , we know life is precious and unpredictable. I had no hesitation in taking medication and my symptoms are well controlled.
Asknif I missed anything. Good luck
Hi Emily,
I love everyone of your replies so far, it is so important that you hear it from the people that know and are living with the disease. It is such a shame there is so much negativity on Dr Google and can really make your life hell if you get sucked into it.
I don’t have PD but I am living with it as my husband who is a 53 was diagnosed last November. We also have a daughter who is 16 who was diagnosed with crohns disease age 12. On her diagnosis I made myself so ill with reading all the worse case scenarios on Google. I had my daughters life predicted and believe me it wasn’t good. One day I woke up and decided I had had enough with feeling so sad, drained and weak. So from that day I stopped all the googling and started to get myself back on track. I believe what did it for me was to realise the fact that none of the awful things I had read about other people’s stories who had crohns was not how it was for my daughter. If anything it was totally the opposite. My daughter recovered really well once she was put onto maintenance treatment to keep the disease at bay and help with symptoms. This is not a cure by all means as this is a lifelong illness just like PD. The fact that she became really well and was doing whatever every other teenager was doing and living a normal life really helped me to understand that I should not waste life thinking the worst case scenario when it very well may not turn out that way.
I hope that helps you in a positive way. I would say that exercise is so important not just for your physical health but for your mental health too. I make sure I support my husband and exercise with him. Sometimes it maybe just a short walk or I will do his exercises with him that the pyhsio has recommended. Exercise also helps me with my state of mind.
Don’t let PD rule your life Emily, enjoy your life and live as your were. None of us know what the future holds and what it will throw at us. We shouldn’t have to put our life on hold when it throws diseases and illnesses our way, we just need to adapt to it.
Take care. X
Lizzyg, exactly my attitude so good for you. I’m fully recognise that life with Parkinson’s can be difficult, challenging, frustrating etc. etc but it is my life and I have no intention spending it being miserable. Have you seen the thread I started a while back ‘today was a good day’ I think it will appeal to you.
Hi Tot
I have seen your thread and it has encouraged me to always use your method into my days. I make sure I always find something in our life to be grateful for.
I love all your post Tot I find them all very encouraging and positive.
Have a lovely day. Xx
Thank you for the lovely comment, I am always very touched when someone is able to take something from what i write that helps them cope a little better with a life with Parkinson’s. Ýour kind words are much appreciated.
Have a look at red light therapy on youtube, a lot of promise and also low carb diet keep off the sugar.
There are promising ideas which can keep you motivated and slow the progression .
hi Lizzy,
l was very interested with your post and I very much sympathise with your concerns. l was diagnosed in 2005 and at that time l was working as a solicitor. Lookingmback, l am sure that the first signs of PD became evident when l had what l thought was a panic attack driving back from France in 1999. lt. is a very slow moving disease and l think it is said that when you are diagnosed you already have lost 50% of your Dopamine. l retired in 2006. and had a wonderful 10 years in which my creativity went on overdrive. l made more than 300 short films, wrote 400 poems and modelled for photographs by 425 different photographers as part of my project “Over the Hill”. I had Deep Brain Stimulation surgery in 2014 which stopped my tremor and my freezing and that has lasted pretty well since then. However, the medication l was on, especially Mirapexin, caused impulsive/compulsive dissorders and I remembered the words of a friend who is a Neurosurgeon who said “the tremor is the least of your problems”. l found it difficult to admit to anyone that l had PD in the early years following diagnosis but then it became part of my identity and l almost felt proud to have it. link removed by moderator l have written about it (see below) and made several films about it and several films not about it. l would endorse those who have advised regular exercise (Pilates worked for me) and who have seen it as an opportunity to fill your life with different things. I hope this helps.
Thank you Karen, this is really helpful. I wonder if you had psychotherapy to help or felt you needed it. I feel like I’ve suddenly woken up to be told I’m 71 and all my concerns I had before have to be converted to someone 20 years older than me. I think this is my real shock. When I googled ‘find a psychotherapist for parkinson’s diagnosis’ one of the first links was to Parkinson’s Org but to end of life counselling so that wasn’t at all helpful and just made me weep! Oh my goodness…
Thank you Lizzy. I see a lot of loving wives on this forum, your husband is lucky! My husband is utterly fab too but do think it’s so different being a woman with Parkinson’s especially one who is used to doing all the running around looking after everyone. Oh my god, the thought of not being able to do that is what’s upsetting me more. than anything else…
Hi Emily
I had a bit of a melt down at year 2 where I was wanting to know what my future was. Worst case scenario is horrific. I was referred to a psychologist ( but saw my GP first who prescribed amitriptyline - antidepressant). I had been very weepy and realised it’s ok to feel sorry for myself. I had one session and both the therapist and I agreed it was not something I needed at that time.
I take my medication, excercise regularly (did so anyway) and surround myself with people who are good for me and don’t drain my energy. I avoid stress as much as I can as it is a trigger for me. I was made redundant in 2020 which was a blessing as my job was very stressful.
My Parkinson’s nurse is very good and helps put things in perspective. PD needn’t stop us doing things. Nor should we blame things on our PD. Easier said than done I know
Where do you live? I am in Scotland.
Life is for living…do what you want to do if you can.
Sending positive thoughts and energy to you
Thank you Karen. I wish I lived nearer as you sound like just the kind of person that it would be good to hang out with, but I’m in London. Thanks for your advice, I’m finding it so helpful!
Why don’t we exchange numbers and we can what’s app? My email is:
information removed by admin
I’m 52, diagnosed about 5 years ago with with young onset. I feel great, I’m a bit slower, I take the odd side step when I move, you’ll get to know what I mean. But I feel great and I’m very positive, don’t dwell on Parkinson’s and get on with your life. My opinion, many people with Parkinson’s in their 60’s or 70’s would have been diagnosed in their 50’s with modern technology.