About Introductions and personal stories


#22

Just make sure you have someone keeping a look out for any changes. Try to live in the moment and don’t think too far into the future. You’ll have ups and downs but live your life.


#23

I’m finding it very difficult not to think about the future. I know I should live one day at a time.
Thank you for the messages


#24

No problem. Take it day at a time.


#25

Hi there,
I’m new to the forum. I was diagnosed in January of this year, a month before my 54th birthday. I am having a lot of trouble coming to terms with the diagnosis tbh. At first i was sure that it was a mis-diagnosis and was very determined that it wasnt going to change me in any way. Since a recent appointment with the Neurologist it has hit me like a train that I really have got PD and im not coping well emotionally. Friends and family have all been very supportive but i think they struggle to understand it.


#26

I can’t work it out either. I can’t find a new document icon


#27

Hi Ruby,
There’s no right way to take the diagnosis. Let yourself grieve awhile. Then start looking into ways to help yourself. There’ll be good and bad days but as most people say on here, it’s just a new way of doing things.
Find a Parkinson nurse, usually attached to consultant or on t pduk. They mostly provide good support. Find the right exercise and diet that suits you. Be kind to yourself.


#28

Hi @Grabcsma,

I hope all is well.

If you’d like to download a word document, you need to click on the upload icon (please see the image below) and select ‘choose files’ then you’ll be able to upload your document this way.

upload

I hope you find this useful, however, please let me know if you have anymore questions.

Thanks,
Reah


#29

Hi all I don’t know if this is the right place to say about myself and my Parkinson’s Disease diagnosis or to regale you all with my story over the last ten years plus since diagnosis but I am Peter and was diagnosed on 28 march 2008. Though I had been having problems with movement and stiffness/ rigidity issues for about 12-18 months prior to diagnosis. As we all know, pd is not something one just wakes up with one day! I was 43 at the time and still married, although there were issues there and my now ex wife had two serious battles with breast cancer and at time of writing she has stage 4 bone cancer and is not expected to last long. So all in all a very stressful time, and you can throw in our separation and subsequent divorce as well as my mother who was dying at the time too. Any wonder I kinda cracked? Lol


#30

Hi @parkopete65,

A warm welcome to the forum.

I’m sure you’ll receive responses from your fellow members, however, I just wanted to make you aware of the Parkinson’s UK website which you can find here, https://www.parkinsons.org.uk. There’s a lot of useful information about different topics relating to Parkinson’s so do feel free to explore the website in your own time.

In light of the information that you shared, you maybe interested to know that we also have a peer to peer support group where you can speak to people who have been in a similar situations to you (in addition to the forum). For more information and support, please contact 0808 800 0303 and speak to one of advisers for the peer to peer service.

I hope you find this information useful.

Best wishes,
Reah


#31

Thanks Reah, in light of what exact information I shared do you think I would benefit from the peer support service?


#32

Hi Ruby1, I was diagnosed 10 years ago. Did not take meds for 3 years. It is very difficult to accept the diagnosis I know and it took a few years for me to accept this although I knew that I had pd. If you are extremely lucky you will get a Parkinsons nurse like I have. She can really lift your spirits if you are down in the dumps. Everyone with pd should have access to a nurse. I would say try to carry on as normal if you can and don’t let this thing rule your life at this stage. I still drive, go fishing and do most things. I am determined to carry on and not let pd spoil my life. If you can do that then you are well on the way to seeing that this is not the end of the world.


#33

Hi @parkopete65,

I definitely think it would be worth exploring and if you feel like it’s not a good fit for you, you can always discuss alternative options with our helpline. Also, feel free to continue using the forum as our members here always show a lot of support to each other and I’m sure they’ll extend it to you.

Best wishes,
Reah


#34

Hi papa joe, thanks for replying to my post. Since my diagnosis in January when I was promised an appointment with a PD nurse I have only had a letter to say that the PD nurse was off sick. At first I wasn’t too worried as I was in denial and so in fairly good spirits, however since the most recent appointment with the Neurologist and also Having a virus which brought me down, I have spiralled quickly down into depression and been signed off work. All though family and friends are supportive I really feel I now need to speak to someone who understands how I’m feeling and can offer some good advice. I think I will try ringing the helpline on here today. It’s encouraging to hear that 10 years on you are still driving, fishing etc. I can’t get over this feeling though like my life’s over :pensive: x


#35

Ruby 1 , you know when I was diagnosed i did not feel sorry for myself. I felt for my wife who had seen her father suffer from this disease. I thought , do not be greedy, i was 56 and had had a good life. So many other people were dying and suffering at a much younger age from all sorts of illness. If you can take that onboard i am sure you will feel better about the whole situation. If you want to do something, anything, then do it today ! Live each day as it comes. I am sure your family will be very supportive and will take the time to discover what pd is all about. There are positives to even having pd. I have met so many people since we got our dog. People who normally would just pass you by in the street take the trouble to say hello because i am out with the dog. I hope this message can help you come to terms with pd but remember it is very soon after your diagnosis and it takes a while to get your head round it. Please don’t hesitate to message me if you want to talk.


#36

Totally agree live your life should be our cri de core (cry of the heart). I was diagnosed three years ago on reponex 2mg class and 2 mg cobenaldopa this backed up with my other medicine which is three sessions of yoga three gym sessions ang golf this gives me a positive outlook on life. Go for it! The


#37

Thank you papajoe. I know what you’re saying, I keep thinking of a friend I used to work with who had a very aggressive cancer and didn’t make her 50th birthday . She won’t ever see her grandchildren, but I’m still able to spend time with my precious granddaughter and so I know I am much luckier than many, but at the moment I can’t seem to get my head round the shock of having Parkinson’s and what it means for the future. It seems very scary and It all feels so out of my control. I also feel so sorry for my husband who is only 48, it just seems so unfair on him that he has to become my carer and I worry that he will feel trapped. :disappointed:


#38

Ruby 1 , Give yourself time and you will accept it. My wife said when I was diagnosed that if it had been cancer I could have been gone in a short time so as the saying goes there is always someone worse off than you. I suppose the main problem is the disease affects everybody differently so no one can say where you might be in 5 years I must admit that reading some of the blogs of people taking there meds horrifies me. Newly diagnosed people being put on huge doses of meds. I obviously can only speak for myself. I have had 10 good years. Now at this stage I can say the one thing that we all do without thinking is walking normally and its the one thing I really miss. I have no misconceptions about how I may end up. I watched my wife’s father suffer pd. I shall be up at 3 tomorrow morning, chuck the fishing rods in the car and go and watch the sun come up by the side of the pool. Another great day to be alive. DONT let pd ruin tomorrow ! enjoy each day as it comes. Hope this helps to get it in perspective a little.


#39

Hi, I’m a new member. My husband has recently been diagnosed with PD and getting linked up with the relevant services. After the initial shock of the diagnosis, I started reading about PD and the treatments available. To be honest, this is the scariest journey ever… I’m watching my 52 year old husband slowly give up. Once so full of life, he’s struggling to come to terms with this new phase in life. I’m struggling. I’m looking forward to gaining further insights and swapping tips and ideas. Not sure if I’ve done this right… if not I’m certain someone will put me right.


#40

Hi Yes you have done the right thing.
Just by saying what you have has started you on the right path…

I was 55 when.i was diagnosed.and also I have had rheumatoid athritis since ii i was 40.

Every day is different.
For me I’m.just happy I’m.alive.


#41

Hi @Ladybird52,

A warm welcome to the forum.

I’m glad to see that you’ve already received some lovely advice from babswood. I’m sure you’ll receive a lot of support from other members but in the meantime, I thought you’d be interested to know that we have a newly diagnosed section on the Parkinson’s UK website which answers a lot of commonly asked questions that will be relevant to both you and your husband. You can find the page here, https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

You can also contact our helpline and speak to one of our advisers about any concerns that you may have or get advice on a medical queries that you may have in mind. Please feel free to give them a call on 0808 800 0303.

Feel free to come to back to me with any questions and I hope you find the above information useful.

Best wishes,
Reah