New diagnosis


#1

I’ve recently been diagnosed. I don’t know what the future holds and if I’m honest, it scares me. So many mixed emotions. Who to talk to about how I feel. Any help or advice.


#2

Hi Aide,
Try not to think too far into the future, concentrate on the now and what you can do to keep yourself active. Get in touch with a Pd nurse either on this site or attached to your hospital. They are a great source of information.
FB has some very supportive groups to get ideas. Just key in Parkinsons.
Find an exercise that you enjoy and look into your diet and see how you can make it work for your body.
You’re e young and you have alot of years ahead of you.


#3

We’ll all do our best to help.
We’ve all been where you are now.
Try to see us as a strong arm around your shoulder.
Supporting you.
Things have changed.
Not necessarily got worse.
Just got different.
Hubby.


#4

Thanks for the replies. I’m starting to realise that I need to take one day at a time. Some days are good but most are bad. I’m only just starting out on this part of my life. I’m sure I will have many questions along the way.


#5

Hi Aide,

We are with you pal, I am now 9 months into diagnosis and still trying to come to terms with it. It sucks and the why me always comes into your thoughts, its all normal.

It’s life changing but not life ending. Stay strong.


#6

Hi Aide

Welcome to the forum. One thing that may be helpful when you are ready is to seek out a local group… there is a useful guide here if you haven’t already seen it: https://www.parkinsons.org.uk/information-and-support/local-groups.

Everyone’s experience is different, but hopefully once things settle down, you will find that you can still live a near normal life for many years to come.

Best wishes
JF


#7

How does everyone else deal with the diagnosis?


#8

Good question Aide, at first for me, very badly. I couldn’t believe how unlucky i was. Now! Its become the norm, i am still terrified of what might happen but what will be will be. You just need to focus on the positives, I actually had a heart attack a few months ago. I strongly suspect it was caused by parkinsons drugs (rasagaline). After something like that which is life threatning it puts PD into perspective cos it aint going to kill you.

You can either roll over and feel sorry for yourself or fight and bring it on. Your call mate, either way you have friends here to help you through


#9

Hi again,
Everyone deals with the news differently, just as each person’s symptoms and progression is different.
I was relieved at first having had a couple of years with bad neck and shoulders. Then i was gungho about it not letting it change me. But it does change you and your life. Its finding different ways to do things and remaining positive. Exercise and eat well and surround yourself with positive, supportive people. Life is too short to put up with negativity and stress.


#10

Hi! My nan has been recently diagnosed and from seeing her, I know it seems scary with what the future may hold but please hold on to the now and focus on your family and loved ones sweet. We’re all with you, keep on looking on each day. X


#11

Hi all. Over the last few days I’ve sort of come to terms with my diagnosis, movement fairly good also, I’m aware that it may not be the case though. Its my wife I worry about now. She is 10yrs younger than me, at the start she was very strong and supportive. I received hard copies of the info from the website. She read them over the weekend and she had a wobble (her words). How do I reassure her that things really will be ok?


#12

Hi Aide,
I worry about my husband too. Its not what they signed up for is it?
I think my husband copes better when he sees me trying my best. Exercising, looking after myself and living life to the best i can.
We have done a couple of PDUK charity walks, along with my 3 sons. It makes us feel like we are doing something.
Maybe join some FB groups (both you and her). They can be very positive and there is no better info than from people who have PD.


#13

Hi @Aide,

A warm welcome to the forum.

I see you’ve already received some amazing words of wisdom and support from a few of our members. As you’ve expressed concerns about your wife, you might be interested to know that we have a relationship section on the Parkinson’s UK website which has a lot of useful information and tips about dealing with Parkinson’s in a relationship. I think the information here will be really useful for you.

We also have a helpline service where you can speak to a Parkinson’s specialist about any concerns that you may have and they’ll be happy to support you. Please give them a call on 0808 800 0303.

Please let me know if there’s anything else that I can help you with.

Best wishes,
Reah


#14

Hi Raeh. Thank you for the welcome. I phoned the helpline last week and the guy who answered my call wes very helpful. I’ve received some wonderful support from people on this forum, as I’ve only been diagnosed only just over a week and I’m still trying to find my feet, hopefully I can also give words of wisdom to somebody in need one day.

Aide


#15

Hi Aide,

I was also diagnosed only a week ago, but I suspected it was PD once the tremor started. I feel like I’ve accepted it, however I do have moments where pure fear takes over. I believe this is normal and as long as the positivity remains I believe I will win this battle.

I’ve joined a gym, vigorous exercise is important. I am also going to attend a local group session I found about on here. As I always like a challenge I aim to run (or walk) a charity 10k in the next year, this way I have something to focus on and I raise money for PD research.

I didn’t catch your age, but I assume you are a ‘young’ one like me as I’m 47. Like you the first person I worried about was my OH, my wife didn’t sign up for this when she said I do… but guess what she has been a rock, very supportive and positive.

I’m here anytime you want to bounce thoughts, concerns or even jokes.

Steve


#16

Hi Steve.
I am 47 yrs old also. It is a shock but like you I’m determined not to let it ruin my life. I understand that vigorous exercise is important. Before my diagnosis I worked 10.5 hrs a day without a break so never found the time for the gym or anything like that. Once I return to work on Tuesday I may reduce my working day and have the time for the gym or swimming.

My wife is being a rock for me also, I don’t know where I would be without her at the moment. I know things may get tough but we will face that if the time comes.

All the best.
Aide


#17

Hi All. Sorry ive not been here for quite a few months, I’m still trying to get used to the medication and the new me. I’ve sort of been in denial since diagnosis. The reason I’m back here today is because I need everybody’s help and advice.

When I was diagnosed, my employer was very understanding and allowed me to reduce my working hours from 10.5 hours to 8 hours a day to try and manage my symptoms. At the time he was battling cancer, as I was his manager he needed me. Unfortunately he lost his battle with cancer 5 weeks ago. I promised him that I would keep the shop going as well as I could.

On Monday, his wife (widow) who know owns the business visited my house and after a discussion with her, she informed me that she was worried about me and the fact that I was struggling and making myself ill. She said that she needs a manager there for the whole day and not just part of it. So, in effect, I’m due to be unemployed very soon as she is looking to replace me and there is no other position available. I am aware that this is discrimination and unfair dismissal. I have seeked advise from CAB and other sources. As you can imagine, if I have no job my wife and I are likely to become homeless, I’m currently looking at benefits but most of them only cover the basics. Do I persue a discrimination or unfair dismissal as she is also a good friend? HELP

I hope you all well and dealing with life’s challenges
Aide x


#18

Hi Andy,
I understand your dilema, made worse in my view by your new boss being your friend. I don’t have a definitive answer, but a few points for you to think about before going further.

Do you feel the job is making you worse? Or is this just her way of trying to push you out?

Gov.uk website states:

"can be dismissed if you have a persistent or long-term illness that makes it impossible for you to do your job.

Before taking any action, your employer should:

look for ways to support you - eg considering whether the job itself is making you sick and needs changing
give you reasonable time to recover from your illness
If you have a disability (which may include long-term illness), your employer has a legal duty to support disability in the workplace.
Dismissal because of a disability may be unlawful discrimination."
Another section states
“Reasonable adjustments in the workplace
An employer has to make ‘reasonable adjustments’ to avoid you being put at a disadvantage compared to non-disabled people in the workplace. For example, adjusting your working hours or providing you with a special piece of equipment to help you do the job.”

It could be worth speaking to a legal expert before you do anything. I had similar circumstances a while back and my local CAB was able to arrange a free consultation with a solicitor for me. ACAS can also offer advise.
I wish you all the best

Rose


#19

Hi Rose.
Thank you so so much for your reply. I’m not entirely sure if the job is making me worse, I’m still trying to get my medication right. I have spoken with with a few people regarding this and they have all said that she is in the wrong. I have more people to speak to today. Unfortunately, I am going to have to put the friendship part to one side and think about my wife and I.

Adrian


#20

I have a similar situation looming.
At present it looks like my boss is trying to look after me. That could change very quickly though.
I’m not sure that my rights in Spain are what they would be in the UK.
You have to look out for yourself.
Regards
Hubby