@Tot @Lemon @cruisecontroller @Beth13 @jason.mod @TimA
Well that’s it. Confirmation of diagnosis today. Feeling weird.
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Hi Steve,
Thank you for sharing your diagnosis with us. As you’ve already seen on this thread, this community is serious about supporting each other and sharing not just experience, but optimism, hope, and determination. You are in for many changes, and we will not minimize the struggle, but we can assure you without hesitation that you are not alone. We recommend having a look at this section of our website. And please don’t hesitate to make use of our wonderful helpline staff, at 0808 800 0303. Your questions needn’t be medical; they have a wealth of knowledge to share and resources to offer, and are always happy to hear from our community.
Best wishes and warmest regards,
Jason
Mod Team
Hiya Steve,
I’m so sorry to hear that you have had it confirmed today. Its not surprising you are feeling weird - no amount of preparing yourself actually prepares you does it!!
All I can say to you is take some time but do not dwell. Talk to your wife about how you will both deal with this as it will affect her too and if you plan together you will find a way through it together.
As much as I know right now you may feel like you want to lock yourself away, try not to shut your family out, and know we are all here, we will always help in anyway we can x
Take care, sending you and your family warm wishes x
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Hello again SteveinDevon, even when you know in your heart of hearts it’s Parkinson’s, confirmation means you can no longer consciously or not, tell yourself it will be something and nothing, that you’ll wake up tomorrow and realise you’ve been dreaming or whatever other technique you’ve been using to keep going. Now you know. I think in the short time you’ve been posting you’ve come a long way. You recognise you’ve been in denial, now you have to adjust to the reality that is Parkinson’s. The next few weeks and months will be a strange time as the way forward can take some time to be sorted. The best thing to do right now and what newbies are commonly advised is to get used to the diagnosis, take it one day at a time, don’t go mad reading everything in sight instead concentrate on what you need to know now, make a note of any questions you have and most of all be kind to yourself and recognise any emotions you have, which may well cover just about everything are legitimate. Ýou wìll get through this we all do in one way or another. My best wishes to you and your family.
Tot
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To be honest, it’s a relief. Now I know what I am facing and I intend to so head on. I have past history of defying what people feel I can achieve and I don’t intend to stop now.
Neurologist told me over the phone yesterday as I have a Teams meeting with HR today. Nothing sinister in that, my company want to ensure my safety at work and now we can work out a way forward. Been prescribed Sinemet and if my GP sends it down today, my wife can bring it home tonight as she’s the dispensing pharmacist.
So far, loads of tears but basically we are all relieved to finally have a diagnosis. Luckily the kids are old enough to understand and help out.
It would seem, from my medical history that I have been living with Parkinson’s for over 10 years. Hopefully the medication will help bring it under control. There’s a specialist centre in Taunton that I have been referred to for the mobility issues and hopefully, my goal is to get well enough to get one last season out of my football boots!!!
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On your way up and couldn’t be more pleased for you and the family.Great to hear you are well supported at home and work sadly not everyone’s experience. I hope you get to wear the football boots again!!
Tot
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This is inspiring! Good on you!!
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Hi @SteveinDevon The main thing is you’ve still got a job and the firm are behind you and will no doubt be looking after your wellbeing. As a Lorry Driver in the building industry there wasn’t anything I could really do and so at 58 I was medically retired(I make a joke out of it and say mentally retarded but this is frowned upon by the Moderators, sorry again, as it may cause offence to others, mainly woke/snowflakes !!). As @Beth13 has basically said, you’re one of us now, so you know where we are, anytime something you want to ask crops up, just pop in her and we will help you all we can. Remembering my diagnosis, my eldest brother had the most severe form of the disease in that he had full head and body shake. At the time we were told that it isn’t hereditary but it must be for me to have it and i’m not the only one, I have known friends who have it in their family. Anyway Steve I am pleased for you in that you can now move on with your life, take on board what you’ve been told. Someone else you may want to have in your arsenal is a Parkinsons Nurse, I don’t know how far you are from Totnes but Sian Day at the Hospital there is a good person to get to know. Take care and stay safe.
Les
Glad to hear you have an answer. I understand what you mean about “relief”.
Thanks for sharing this.
Thanks everyone. To be honest I have the beginnings of a great care team in Taunton. Emotions still a bit raw but essentially trying to carry on as normal. With my wife working in a pharmacy, I have no doubt that today they are all looking at medication options!! Daughter is starting a nursing degree this year so she is also avidly reading up. My son is just my son! He has already asked if this means I can get into Exeter City’s ground at cut price in a wheelchair!! Right now, I am just trying to calmly look at what I HAVE to do right now such as DVLA. Wife has booked a spa weekend for us both in November so we can zone out but give the meds a chance to kick in first.
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Should I wait to have confirmation in writing before contacting DVLA?
I personally wouldn’t wait. In the unlikely event you are involved in an accident I think it better they are aware and anyway, you have a responsibility to make the decision of being safe to drive pending formal confirmation. For your information other members have stated that once informed DVLA can take some time to respond. Others members have also said you should inform your insurer. It shouldn’t make a difference but better they know.
Tot
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Hi SteveinDevon hope your weather is better than here (Staffordshire), for the heads up, I advised DVLA in January and only have last week received confirmation that my licence will change to a three year medical. They had to write to consultant then a medical team at DVLA review to make the decision, it’s taken since then to get to this point, no one answers the phone when you call them and when I did get a response was told I’m in the system. So don’t worry about how long it takes them. I echo what has already been posted, take each day as it comes, try and stay positive, active and whilst we all have a different view and coping strategies I am reminded that I’m still me and can do and will do! Take care
When diagnosed I got my consultant to contact DVLA which they did and now I just have a chat with my GP every three years. Because of operating a 44 tonne HGV I had to surrender this licence but am fully competent to operate a car !! Put it like this, when my wife doesn’t feel safe riding in the car with me then that will be my time to resort to public transport !! LOL
Good to see that your daughter is getting into nursing, I wish her every success. On the subject of being classed as Disabled, Citizens Advice can help you and your wife(being your carer) there and to what you’re eligible to claim, you are entitled, even now !! Having a Disability Badge also has its’ advantages. You should get discounts for Exeter City and anywhere else you deem to go, just ask. Look into Disability Rail Cards, I have one.
Les
@cruisecontroller does this automatically entitle me to a blue badge? Wasn’t sure. I need to open the car door fully to get out. I am not in a wheelchair, that was my sons idea of a joke!
Steve it has been been a long time but my wife seems to think I got mine on the Mobility part of P.I.P. but if you go on to the Blue Badge site this will tell you what the requirements are. Good luck.
Les
That’s right. If you get PIP Mobility you have automatic entitlement to a blue badge, obviously you need to apply but it is a given.
Thanks for the heads up on that one Tot, P.I.P. will also come in useful now for when he gets to retirement age, it is essential to get it so as it continues.
Les
HI Im new here, but understand your journey!! I have had some real lows and for me just take one day at a time . And try and find at least one thing in the day that makes you smile. And hang on to that feeling with both hands.
love Esme
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Yep, it’s hard but like I said, it won’t define me!