Hi. After over 12 months of uncertainty I was diagnosed with Parkinson’s Disease on the 6th Jan 2020, I’m 49. I was put straight on Madopar. My family were the first to notice changes in December 18 in that I was having difficulties with co-ordination & stated I seemed to have ‘slowed down’. I then started to notice that I was struggling to keep up with people when walking and my sister was annoyed with me telling me to pick my feet up when I walked. I had bladder issues, loss of smell, tiredness and low mood for a while beforehand which I put down to the menopause.
I visited my GP at my families request in Jan 19 and at this time I had noticed changes in my right hand and wrist, I was struggling with typing, doing up buttons and whisking food. My GP carried out an examination and referred me to a neurologist.
My symptoms have progressed significantly in the right hand side over the past year and stiffness/rigidity is my biggest problem resulting in a fall last October. Now my symptoms are starting in the left hand side so I’m hoping the medication helps alleviate this. I have no tremor.
At this time my biggest worry is financial as I work as a business manager which is predominantly field based and involves a lot of driving so I’m fearful of losing my job.
Has anyone else been in a similar situation with work & if so how did it work out for you?
Hi julez sorry to hear about your diagnosis and I know how hard it is to accept you have pd on the driving side of things I was told to immediately inform dvla and unfortunately they stopped me from driving so be prepared don’t know if they stop everyone do you have a pd nurse if not find out if you have one in your area through your GPS or try free phone number on here you should be entitled to benefits again you need a pd nurse to help guide you all I can say is try to stay positive it is hard but you can still live your life but you have to adopt a few changes if I can help please get back to me anytime I am 9th member of my family to have parkinsons so do have some knowledge take care and take each day as it comes
Hi Pete c
Thank you so much for your response. I’m sorry to hear about your family history, it must be so difficult to deal with. I’m still trying to come to terms with my diagnosis but finding it hard.
Thank you for your advice. My neurologist says he has referred me to a Parkinson’s specialist and told me I’d hear from my local Parkinson’s nurse…I haven’t heard anything yet but it’s only been a week.
I will contact dvla today and hope for the best.
Thank you again
Hi Julez, Welcome to the Forum. If PD is not affecting your ability to do your job then don’t worry about it. Regarding DVLA I am on a 3 year restricted licence and so far have not had any problem getting it renewed, my Neurologist informed them, I was formerly a lorry driver. I was diagnosed in 2011. As @Petec has said, take each day as it comes, do the best you can in all you do and adopt a positive attitude. You have Parkinsons, it doesn’t have you is what I tell people. Regarding the Parkinsons Nurse your local GP Surgery should be able to put you in touch with them, if they are anything like mine they will be invaluable to you. You are entitled to Benefits despite you working, speak to Citizens Advice, they were extremely helpful in my case. Just remember, you’re not alone and there are plenty of people on here who will step up to the plate and help you with anything you want to ask.
Thank you for your positive reply.
I’ve informed the DVLA and they’ve told me I can’t drive at this time and they’ll let me know in 10 days how things are progressing… I feel like I’m in a whirlwind and don’t know which direction to go, I’m trying to stay positive but is so hard . I’ll contact my GP and ask their advice on putting me in touch with a Parkinson’s Nurse as you and @Petec suggested.
Thank you again
Hi @Julez, good to see you’re dipping into the forum. I can completely relate to your feelings around diagnosis. I had the news in October, and the initial feelings were of sadness but not shock. I had a sense this might be one of the options and I am grateful, with the greatest of respect, that it wasn’t MND or MS.
I allow myself brief moments of wondering what the future is going to bring, but mostly try and live day to day, enjoy what I have right now and set myself some meaningful and manageable goals. Positivity does seem to be the prescribed mindset, and I have also started keeping a journal where I can get some thoughts on paper and not ruminate on things too much.
Anyway, I shouldn’t ramble on about myself…keep well and all the best.
Hi julez something I should have said was that no two people are the same and that applies to meds what works for one person may not work for someone else so I wouldn’t read too much regarding what might happen to you I would rather cross each bridge as you come across them there is usually an answer as les said you will find help here if you want to catch me I’m always on insomnia thread or fav songs look forward to chatting with you
Hi @dbevan79. Thank you for your message. I too feel blessed that I wasn’t diagnosed with something far worse. When I first visited my neurologist he mentioned Brain Tumour, MS and stroke and an MRI thankfully ruled all three out… then there was mention of Spinal stenosis (another clear MRI) followed by Parkinson’s plus conditions…I had a slightly abnormal EMG and then an abnormal DaTscan resulting in my PD diagnosis, which to me is the best of a bad bunch!
I like your idea of keeping a journal and think I’ll do the same thing, I’m sure it’ll help make sense of and bring order to the million things running through mind. Take care
Great advice @Petec. Thank you
Hi Julie, @Julez in regards to; At this time my biggest worry is financial as I work as a business manager which is predominantly field based and involves a lot of driving so I’m fearful of losing my job.
On the website there are several fact sheets on this an your rights. However, how does this work in practice? Well in my case it was similar to you in that 3 years ago I had a field based job. I read up on my rights and decided to approach my employer for workplace reasonable adjustments ( The Equality Act 2010 says there’s a duty to make reasonable adjustments if you’re placed at a substantial disadvantage because of your disability compared with non-disabled people or people who don’t share your disability. Substantial means more than minor or trivial.) to enable me to stay in employment, and I am still.
We discussed what the issues were and I gave some suggestions on what I really needed and how to restructure my role. I went from 5 days in the field to 3 initially and 2 days working from home. No drop in pay just some changes to what I did. The reasonable adjustments have been reviewed several times as symptoms have changed. I have now after 3 years reached a stage where I have taken a sideways move so I can work 9 out of 10 days from home and one day either out in the field, head office or if not needed I work from home.
So my advice would be to request a meeting with your line manager and then it may involve a follow up with HR. If you are a member of a union or a professional body you should be allowed to have them at the meeting. Go prepared with what the issues due to your disability are and if possible some solutions on what could be but in place to manage these for example no meetings at head office before 10am to give you travel time. I could do this instead of this and the benefit to the company and me would be … also be prepared to agree to what you are comfortable with in any restructuring your role.
Good luck and don’t take any quick decisions about your job until you have had some advice and requested in writhing some reasonable adjustments.
If you wish in time pop back on and let me know how you got on
Hi @jps1926. Its great to hear how your employer has supported you… I have already approached my employer regarding reasonable adjustments and my HR dept is involved, they have agreed for me to be office based only temporarily as I presented them with a fit note from my GP stating this is what I need. I have to say that I’ve been met with some resistance up to now, I’m told that my role cannot be adapted (I support agents out in the field and visit 40+ customers in their own home each week & have targets to meet regarding this) and they are dead set against me, or anyone else for that matter, working from home. There are 4 of us doing the same role in my branch and 153 throughout the company, should they be expected to change the role for one person? Unfortunately I’m not in a union but I will certainly seek further advice & read up on my rights as you suggested. In my opinion I can do 90% of my job from the office and from home and my performance certainly hasn’t declined. In all honesty I feel as though I’m an inconvenience to them and now the DVLA have told me not to drive at this time its added more fuel to their fire.The last thing I want to do is walk away that’s for sure!
@Julez, Stick to your guns, don’t leave your firm until you’re pushed but by all means, as a safety blanket, look around for jobs that may suit your ability. If you know you are safe to drive then you won’t have any problems with your licence but keep chasing them and point out the importance that having a driving licence is to you. If I wasn’t safe(at 66) my wife would say so but as it is, I am. To confirm what @Petec said, we are all different on here, there may be similarities but in the main we are all on different journeys but going in the same direction, together !! If there is anything else that we can help you with we are all ears and will do the best we can for you. Take care, onwards and upwards. Please keep us updated on your progress through the minefield.
@cruisecontroller thank you again, you guys are all fantastic & I really do appreciate your support & advice! I’m so glad I joined. I’ll keep you posted
Your welcome as I said I’m here anytime if you want to chat
Well I’ve received a letter from the DVLA today stating they have revoked my licence. I’ve called them and explained this will cost me my livelihood and they’re sending me a form to complete. Apparently it’s because I said I have sleepiness but nowhere on the notification does it let you elaborate further. Mine is due to the meds, it can be quite severe at times but also passes after about an hour. I can either try to change meds or do what I have been doing and not drive when / if it happens.
Has a one else had a similar experience?
I’m sorry to hear this.
If you want the DVLA to reconsider its decision because you feel that they have misinterpreted or misunderstood the information provided, you should contact them explaining why you feel the decision is wrong.
The DVLA will generally reconsider its decision, but will expect the request to be supported by fresh medical evidence.
You may need to ask your GP or specialist to provide this, and you may have to pay for any letter that is written. For more information and support on this, please give our helpline a call on 0808 800 0303 or email us at [email protected].
Thank you for your response and advice. I have an appointment with my GP next week and will have hopefully received said form from the DVLA and will take it from there.
@Julez It may be worth asking your GP if they can change your medication so that it doesn’t affect you in this way, it is worth a try. All the best and have a good weekend.
Thank you @cruisecontroller I’ll definitely discuss this with my Dr. Thank you
Hi julez sorry to hear about your licence but I, ve heard a lot of people around my area have lost their licence it seems they are clamping down hope you can get it back but don’t let it stress you out just remember you still can do things and remember to claim all benefits you are entitled to phone helpline or try citezen advice they are very helpful keep your head up and don’t let it get you down