Hi my name is Dave I’m 70 years old and have been diagnosed with Parkinson for 18 months now. I have been to see the consultant at Pinderfields and had 3 head scans. I am in limbo as I don’t know what I am feeling right now or how to deal with what is happening or what to expect. What i would like is to chat to someone who knows or is going through Parkinson to understand what to expect. My GP is not a lot of good as they say I need to speak to the consultant I have spoken to my pharmacist at surgery but only with regards to my medication. What I would like is to speak/chat to someone who is knowledgeable or going through Parkinson to help me understand what is going on and what to expect.
You have come to the right place to engage with other people with Parkinson’s. Our forum community always has wisdom and support to share, as I’m sure you’ll find out soon. You can also call our helpline team on 0808 800 0303. This is a free and confidential service and our advisers are happy to offer assistance in a variety of ways. And of course you can find more information on our website, here.
Again, welcome, have a look around, and please accept our best wishes.
Thank you for your reply I am looking at the website for any feedback or messages. I am looking for any meetings that may be happening to speak to other people who are in a similar position as me.
Thanks for now.
I have been wondering how to reply to your post as you sound quite worried and I suspect it has been building in the 18 months since you were diagnosed.
May I suggest you give the helpdesk a call since you wish to speak to someone. I am sure you will find them very helpful and knowledgeable about Parkinson’s.
However I would just say that your confusion over what you think and feel is not uncommon in Parkinson’s and if you stop to think about it, it’s not hard to see why - in essence a diagnosis of Parkinson’s brings with it a changed future that you never envisaged for yourself, where the only certainty (as things stand) is that you will deteriorate over time. On top of that is the general frustration of living with a condition that changes day to day so you never quite know where you are.
For me, the answer lies in keeping positive and quieting what I call my Parkinson’s brain. I have written about this quite a lot in my replies on the forum which basically says that my Parkinson’s brain is the negative side with a very loud voice and by changing the way you think or perceive a particular event or whatever, you will let the rational brain speak with a stronger voice and drown out or squash the negative Parkinson’s brain. Not always easy to do, but it works for me; and that for me Davesan is the key, you have to find a way that works for you. I suggest you read some of the posts and replies in the introductions and personal stories category. I feel sure you will be able to identify with some of the posts and hopefully the replies from forum members will help as well
Thank you for the information you have provided I will be in contact with the helpline as you suggested. I am trying to put things in order so I can better understand what to expect. I am well aware that I can not cure but only control my condition. I am a very positive person and find it hard to ask for help sometimes but I am aways ready to listen and act on good sound advice.
Will ring the helpline soon
Hello Davesan, it’s difficult for anyone, including consultants, to forcast your future and how your Parkinsons will develope. You will probabely get fed up with people telling you we are all differennt, and how one type of medication works for them, but not for the next person. But thats the realityof it all,we are all different. I was diagnosed in june 2008. At that time, lucky for me, one of the top consultants in the country Dr. AL-DIN worked at Pinderfields . We also had a top Parkinsons nurse, Janet Bridges - Stacey. If you saw me sat in a pub or cafe now, 14 years on, you would not know i have Parkinsons Idon’t have any tremour or shaking at all. But if you saw me trying to walk without my walking aid, i would end up on the floor. All i can say is stay posative, and try to carry on with your life as normal as you can.
I look at alternative strategies that have good empirical evidence. For example red light therapy for pd , b1 therapy, diet - intermittent fasting and exercise. YouTube I find interesting source of information.
Hi Davesan its hard to know what to say as PD is not set in stone. I found out in 2010 that I had PD went to some local meetings the people were helpfull but they was not for me so did not go back to any, the trouble is if you let it take over try and think positive (It Wont Get Me) take each day as it comes, you get know 2 days the same, so after 11 years since i found out it was only last year PD was trying to show me who’s boss (Had a fall) but also I am getting older so I ask myself is it PD or Old age, at one time i used to bowl and for 10 years did Tai Chi but now these are on back burner so I find other things to do what I can cope with, Do join Parkinsons uk I found them a lot more help to me than any body else, the other person i will take my hat off to his my PD nurse we have 4 PD nurses where i go they are all very good, but Jenny who i see is realy on the ball, not saying the others ar’nt but i just seem to gell with Jenny, sorry i do go on a bit hope this little bit of info helps. From you post you sound worried don’t be as there are lots of us to help, just take each day as it comes
Very much mirrors my own thinking mary1947. I too tried meetings but they weren’t for me either and that’s fine too. I try to be true to myself and do what’s right for me same as I did before diagnosis - Parkinson’s may change a lot of things but for me it doesn’t change this fundamental ‘truth’ which has served me so well in my life generally and most certainly in the years since my own diagnosis.
I have just been diagnosed with Parkinson been about 3 months now went to doctors as I had my index finger was bent in a lot and I was shaking thought it was that making my hand shake but they said no and sent me for test and came out with Parkinson, said i most likely had it for years as other things going on that I put down as old age like you trying to come to terms with it and not sure how i feel all i do know is that I feel different than i did before i went to doctors this is my first time of speaking about it and first forum
Hi everyone, I’ve never done anything like this before. I was diagnosed in March last year after friends pointed out to me I was ‘ different ‘ on our holiday together in September the year before.
On reflection I probably had signs & symptoms for a few years previously.
I will have more input but want to be sure I’m doing this right first
Hi and welcome to our friendly forum, Lavinia. Everyone here is very supportive and will be along soon to say hi. Your post has come in as a reply but that’s OK. To make a new post go to the three lines on the top right of your screen and when you click on that, you’ll see Categories so that you can post something new anywhere you like. Hope that helps! But here you are and it’s good to see you.
Yes, people will often say that in retrospect they realise they had symptoms that they overlooked for a while. It’s not an easy diagnosis to hear but the good thing is that now you know what’s going on you can begin treatments that help you cope.
I’m really looking forward to hearing more from you. Meanwhile, feel free to explore our website and the forum.
Forum Moderation Team
Just stopped by to say Hi and welcome to the forum. Don’t get too hung up on ‘doing it right’ As JaniceP said your post came through as a reply (when you click on reply a box comes up in which you can type your response which is what I am doing now) but it didn’t matter, it still appeared on the forum and under an apropriate category, namely introductions and personal stories. There’s no hard and fast rules about where to post but the ‘blurb’ which heads each category can be used as a guide - you will find sometimes a subject crops up in more than one category because it could fit in both depending on how the writer sees it and it will show up on the New and Latest posts - which can be seen if you click on the three lines JaniceP mentioned above - so it will be seen. So if you have anything you want to say or ask, fire away - it will be read however you post it and wherever you put it and you will get the hang of it in no time.
Once again, welcome to the forum and post when you are ready to have a go.