Hi , I was formally diagnosed 2 weeks ago although I guess I’ve known for about 10 months when symptoms started . Tremor to the left hand and difficulty walking for longer than five minutes. I’m 59 and it’s a shock. I have started treatment. I want to be positive and I’ve done the research , changed my diet etc but the last 2 days I’ve been so emotional , crying , reaching out to people whom I had lost contact with but then can’t bring myself to tell them. I feel like I’m grieving for all the things I planned to do but may not do now . The only people I’ve told are my teenage daughters but I’m trying not to overload them with it. .
What I would like to know is if anyone has had counselling or used online support or support groups ? And if it helped them .
Hi JK1,
We’d just like to take a moment to welcome you to the forum community. You will find here a group of people who know what you’re going through, both the challenges and the triumphs, and are sure to share their wisdom and support soon. We will never minimize your struggle, but we will be quick to assure you that you are not alone. To that end, please do avail yourself of the resources on our website, including this guide for the newly diagnosed. Added to that, we have a free and confidential helpline staffed with advisers who are happy to chat with you, who have many tools to share, including mental health resources in your area. You can find them on 0808 800 0303.
Thank you for sharing your story and joining our little community.
Wishing you and your family our best,
Jason
Forum Moderator
It is quite understandable you are feeling emotional, you have just been blown away with a diagnosis you did not want. Allsorts of emotions will be running through your head and for quite sometime until you get used to it. You will come to terms with it eventually and you will realise that you will have to so that you can move forward and live your life.
Yes you have been given this diagnosis but it doesn’t mean your life is over like you are probably thinking it is. Honestly JK1 you will come through this initial shock in time.
My husband was diagnosed November 21 age 53. His mindset has blown me away with how he just gets on with life and is determined not to let Parkinsons get in the way. Ever since my husbands diagnosis and doing research we have come to realise that he has had symptoms for some year’s. He just thought like many others it was normal for him. Those symtoms have never changed the way the way he lives his life. He is still doing everything that he has always done. In fact there is absolutely nothing that he has gad to give up. I totally understand thos wont always be the case when the disease progresses but there is no chance he will sit and wait for that to happpen. I know he will deal with each new symptom as and when it comes along.
I actually can not belive I am typing away all these positive thought’s and you may think it is easier for me to say these things as I am not the one living with the disease, I am living with the disease because my husband is living with it so it effects me too.
Jk1 you do what you feel will help you cope and if thst means councilling then that is what you should do.
All I want to request from you is that you do not let PD get the better of you and you dont give up on living the life you can still have with this disease.
Today my husband will be spending the day decorating our kitchen. This evening we will go out for a meal and tomorrow we wil go out for a nice long walk and come back and plant some seeds ready for our allotment. On Monday after work he will go and play 5 a side football just like he has for the last 25 years. All normal things which we have always done and will continue to do for many years yet in any way we can with this disease.
Take time to come to terms with your diagnosis and then you will realise it doesn’t mean to say your life is over.
Try and have a relaxing weekend and do something nice for yourself.
Lizzyg has written an excellent post although I expect you will find it hard to believe.
You are very newly diagnosed and it has hit you for six, Emotionally you are all over the place, you’ve tried to do the right thing by being positive etc but your emotions are swamping you. You are exactly right when you say you are grieving for a lost life. I think the best thing you can do now is stop, draw breath and give yourself a bit of time to get used to the diagnosis. Maybe counselling will help but I question whether it will help right now, although of course that is entirely your decision. It seems to me you are still in a state of shock. You don’t have to address everything at once or immediately change anything. Parkinson’s in most people is slow moving and there is time to adjust and so will you in your own way and in your own rime. All of us with Parkinson’s have been where you are now and come through it. It may help to read some of the other newly diagnosed posts on the forum and the replies given; I think you will quite quickly see that your reaction is the same as many others.
Lizzyg’s final two sentences sum it up wonderfully. I can’t deny its a diagnosis that nobody would want but your life isn’t over. It has just taken a different turn in the road but there is no reason you can’t have a good life, a life of quality and worth for many years, if that is what you want. You will be alright, you will get through this dark period and you will find a way to live with Parkinson’s. If you can’t believe that at the moment, just take it on trust because it will happen.
Tot
I absolutely salute your mindset tot. I really do love your positve attitude. It was many of your previous posts that helped me realise that PD did not mean my husbands life was over.
Your posts are a real help to everyone.
That’s a huge compliment Lizzyg and I thank you but from what you say of your husband and many other forum members, I’m not alone in finding a positive mindset is a very powerful tool. Maybe there will be a time at some point in the future where Parkinson’s has other ideas but if and until that time comes I intend to enjoy and make the most of my life and staying positive is key to that. I hope all your plans came to fruition
Tot
Hi, I was diagnosed in '19 and waited till last September to reach out to my local group. However, I would urge you to make contact with your local support group (part of Parkinsons UK) as soon as you can. They have so much to offer, from simply someone to talk to, to contacts with exercise groups (really recommended), local Parkinsons nurses, and more. You don’t need to go to meetings, though they offer a great way to meet others informally. You can get involved as much or as little as you want. And with current medications and all the new research there is no reason why you should not have a long time to do everything you want to do. It sounds like you are being proactive, there is a lot of research you can join in with if you wish, which fosters a positive mindset. Just go for it.
