I was told I had Parkinson 9 months ago I have not really got my head around it I feel frustrated at myself feel tired not much energy all the time I have a full time job I try to carry on as normal but more often than not I just feel fed up don’t want to feel this way anybody got any tips how to cope
Being diagnosed with Parkinson’s can take its toll on you emotionally so it’s completely understandable if you’re feeling a range of emotions right now. You’ve definitely come to the right place for tips and general support as there are many others on the forum that understand exactly what you’re going through. We also have a ton of information on our website for people who have been newly diagnosed with Parkinson’s, which you can find here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
Additionally we have a range of services that is available to you, including our local advisers and helpline service. All this information and more is on the link above so please do take the time to visit the page for ways to cope with your diagnosis.
Our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Feel free to give us a call on 0808 800 0303.
Hello Billy1 this tom USA. No matter where you are from A Parkinson’s diagnosis
is a bit to absorbe. But it sounds you are doing well enough to work. So you are early stag. With that said we are all different. but for most disease progression in slow.
With that said LIFE IS NOT OVER. What has worked for me is to focus on upcoming fun things to do with family and friends. Each night write down something that you are going to do. ( attend a soccer game, here a band at a pub, go to the park with the dogs, Go to the art museum, and so on) That way when you start the day it is positive. Next exercise, walk, tennis, keep moving.
The people that tend to do the best with any disease. Go on and do. They seldom say can,t. That is my best advise. Find whats inside that says F Parkinson’s. It isn’t over unless you let it so. PWP Tom
I agree with Omahatom, hopefully you have good family/friends support. It affects everyone differently.
Diet definitely helps. Also making sure that you have your meds under control and levels right. It seems ridiculous to say but the more you can find things to stimulate you and make things more fun, allowing yourself to stay fit, it really helps. Walking/cycling, dancing etc. (If you have a dog/pet that helps on down days as they don’t judge, will comfort but give you impetus to do something as they rely on you to look after them.
Depending on where you are at, use things to help when you need them - walking stick, rollator with seat etc so you can still have your freedom but have support.
Proper breathing from stomach not upper chest. If problems swallowing, practice strong coughing to keep muscles working and to allow expelling food etc.
Black coffee seems to work well with meds for some (my dad - he can be so tired and can barely move, has a coffee and not only speaks clearer but able to get walking etc)
Ps music, video or pictures memories especially of things you enjoy as you do them, so you can look back on harder days and remember your enjoyment as you watch them.
Hi Billy,
I struggled at first was angry, frustrated, fed up etc…
After 6 months I told my family what was going on and 6 months later started to tell friends and then work & my work colleagues. Was this the right thing? In my case yes I have a wonderful supportive family though my Mum bless her can be bit over the top sometimes. The same with the majority of my friends and colleagues though some have drifted away. I am lucky I have a very supportive employer.
My tip would be find a new challenge whatever that might be and give yourself time. I started a Bonsai tree probably not the best choice with hand tremors but I enjoy the challenge.
Try to be kind to yourself and plan fun things and don’t think about what might happen with your PD in the future whilst you can make new happy lasting memories.
Counselling is a good help, does your work offer it. Talking through things or writing or channeling your thoughts through subjects you’re enjoy and help keep you doing normal stuff. There is a lot of comfort from talking to others in the same boat. Big hug, take it easy