So I have finally being diagnosed today, after a MRI scan, nerve conductor tests and several months waiting along with several GP appointments
In all honesty it’s a relief to finally be told what I suspected anyway
I’m not sure what to think or what to do with this news as yet ,I researched the symptoms but not what to do when I received my diagnosis
Once my GP calls me I’ll be starting on meds
Anyway Hi all ,I’m Kevin am 52 and have PD
So sorry only just noticed your post.
I’m Liz my husband was diagnosed in Nov 21 he is 53. We felt a great sense of relief when we knew. Then you start to get mixed emotions. Then you start to realise just how big PD really is.
What are your symptoms Kev and what do you think about going on medication?
Here if you want to chat.
Hello Marmaduke11 and welcome to the forum
You wrote ‘I’m not sure what to think or what to do with this news’ following your diagnosis today. The short answer is give yourself time to get used to the diagnosis and the many mixed emotions you will probably experience. Many write as you have, of the relief of getting a diagnosis which is then followed by a strange, bewildering and even frightening time that comes with the growing realisation that Parkinson’s will henceforth be a part of your life and that its impact is life changing. That is an awful lot to take on board and many feel that their future becomes one deep black hole and the only way is down. You may well have to take this on trust at the moment, but that is not the reality.
I and many others on the forum caution against reading everything you can find about Parkinson’s which generally leads to information overload and you end up not being able to see the wood for the trees; chances are you will only remember the blackest of black outcomes. Giving yourself time will give an opportunity to identify what you need to know now so you can manage your short term, immediate future. In most progression of Parkinson’s is slow so there is time to think, adjust and adapt.
I’m not going to insult your intelligence by suggesting having Parkinson’s is a bundle of laughs, it’s not. It can be challenging and frustrating. There will be times when you resent it’s intrusion in your life, you may be angry at the hand fate has dealt and want the world to stop so you can jump off. Equally you will also find you can live with it, have a good quality of life and that it doesn’t mean giving up on your plans, hopes and dreams (although perhaps do them a little differently) unless you choose to.
There are a couple of things worth pointing out at this stage which are worth bearing in mind. Some may seem obvious but nevertheless I think it worth mentioning them anyway. First is that Parkinson’s is a very complex condition and it is often referred to as being individual; that is because there may be several people with similar symptoms but their impact on each individual can vary. Managing Parkinson’s is something of an inexact science, there are few cut and dried answers and a lot of trial and error while the best course is found and this can take some time. Medication is arguably the area that causes most concern and much debate - should I start or delay, what about side effects etc etc - there is no simple answer to this and ultimately it has to be your decision and what you are comfortable with.
There is no right or wrong way to live with Parkinson’s only the way that is yours as an individual. That being said you don’t have to feel you are your own. The forum is a good place to ask questions or get any kind of support and know you can trust the responses because they come from people living with it just as you are. The Parkinson’s UK helpline is very good too and you will gradually find your feet and develop your own coping strategies.
I hope this has given some reassurance. Those of us living with Parkinson’s have all been where you are today and survived. I myself am over 12 years since diagnosis and still holding my own. Living with Parkinson’s need not be the end of the world, unless you choose it to be. The choice is yours.
I send you my best wishes and hope things don’t take too long to settle down for you.
Thanks for the replies Lizzy & Tot
I’ve tried not to overthink things since my diagnosis, very tempting to do a deep dive into Google but I resisted the temptation, I’m just trying to take each day as it comes
Lizzy ,my symptoms are a tremor in my right hand, stiffness in my right leg which causes me to drag my leg as I walk and slow movement of both my right arm and right leg
Today I’ve received a letter from my consultant advising my GP to start me on Sinemet
I’ve reached out to my local support group and will start attending from their next meeting
Tot , thank you for your detailed reply it’s very much appreciated.
Hi, I’m 47 and saw a consultant and was referred for MRI and datscan in September last year and was diagnosed December. I have less movement in my right hand side and slight tremor . I’ve finally got an appointment with my Parkinsons nurse next month. My consultant started me on sinemet which does ease the rigidity in my hand.
My thoughts and prayers are with you during this difficult time. Sorry to hear you have Parkinson’s. Please let me know if there is anything I can do to help.
Hi Kevin, hope that you are well pal.
I am Martyn (also 52) and was diagnosed with PD on 28th May this year. Like yourself, I was very relieved as I was thinking it was Motor Neurones disease. I have found my experience to be very unusual. I first went to my doctor last August as I was experiencing tremors and shakes down my left hand side. My left hand became fixed to my side which made me walk funny. He sent me for a CT scan and and then to a consultant who sent me for a DAT scan. This was in February. I called my consultant many times over the next couple of months for an update. I eventually got a letter asking for me to come to the surgery. He advised that I had PD and asked me how I was. I explained that I was fine and he said he would see me again in 3 months. No discussion about medication or what i should expect. I am an adult but found the experience quite insulting. Regardless, life is too short. Take care
So sympathize with you… I’ll pray for you