Ok, this isn’t going to be popular, and I apologise.
If you're aged 16 to 64 you could get between £22 and £141.10 a week by claiming Personal Independence Payment ( PIP ). The amount you get depends on how your condition affects you, not the condition itself. You'll be assessed by a health professional to work out the level of help you can get.
Now, we who have been DX several years know only too well what a cheating, degrading, insulting trickster this silly condition throws at us. The comments of.....you look fab....you’d never know....you look amazing, you’re doing great, she must have been DX wrong, blue badge...what a joke. I’ve heard it all...and I’ve also had to sit on the edge of a plant pot in a shopping centre because I can’t move, had to pull into a lay-by because I’m overwhelmed with fatigue, been unable to cuddle my grandchildren in my arms because my tremor is crazy, dropped so many cups and glasses I’m considering disposable option lol, tried to get involved in conversations when I’m completely lost, going to bed feeling exhausted to discover that your mind has other plans. Parkinson’s is misunderstood, and it’s cruel. I am in awe of a founder of a fb group and what she achieves.....but is it the true picture of Parkinson’s? We can’t have it all....can we?
Ok, this isn’t going to be popular, and I apologise.
Some of your comments worry me. Sitting on a plant pot because you can't move and pulling into a lay-by due to fatigue. Should you be driving??? My OH never had such episodes and gave up driving.
I agree with Benji, Ali. If you reported those symptoms to the DVLA they would take your licence away before you could take another breath. If you don’t report those symptoms to the DVLA you could be breaking the law. Not a happy situation, but that’s life. I don’t drive because I would be a danger to others.
You say you drove into a lay by because you felt fatigued. That offers some evidence you are a sensible driver. You do not say you fall asleep all of a sudden at the wheel.
Ali you know how you feel, if you get very tired sometimes as we all do maybe an option would be to avoid motorway driving where stopping for a rest may be more problematic. ?
You say you cannot move , but do not say you 'froze', you imply you were so exhausted you felt you could not carry on shopping, so you found a place to rest?
Ali P have a chat with your pd nurse, doctor about this.. I do not want to sound patronising but you sound like a reasonable, intelligent woman.
Your post was about people not understanding and making assumptions about how you feel, your health and your abilities?
Take Care Ali P. x
Thank you for all of your comments and I appreciate your concern. Regarding driving, I can assure you I have never driven if I don’t feel 100% safe. If I feel fatigued (which is, I understand, a common symptom of PD) I pull over, as I said. My reason for having to sit down whilst shopping was due to an episode of freezing, again, I understand this to be a common symptom of PD, once my sinemet has kicked in...I’m shopping with the best of them! My driving license is reviewed every three years and I can assure you I am completely honest about my symptoms and ability to be in charge of a car and ensure the safety of everyone.
the whole point of my post was to highlight that at times we look normal and can do normal things and that’s all a PIP assessor is interested in, there is no understanding about the unpredictability of this condition and the implications of wearing off periods. I hope I have now explained myself a bit better.
And all the DVLA is interested in is the unpredictability you mention. Devil and the deep blue sea?
I guess what will be will be, if i feel unsafe, I will not drive, if I’m declared unsafe to drive by the dvla, then that is how it has to be, safety of everyone is paramount. Hopefully I will then get some mobility element of pip awarded....but then.....I’m fine sometimes, so maybe not. The joys of having an incurable, unpredictable, degenaritive condition eh.
Sorry you are having freezing problems, you are of course right as long as you have declared this on your dvla licence application or updated them since experiencing freezing episodes you have fulfilled your legal obligation, then as you say it is then up to the dvla to decide whether or not to allow you to drive or not.
No one wants to think they present a risk of causing serious harm to other road users , pedestrians, passengers or ourselves but if we do think this, then it is up to us to take some responsibility too.
Wishing you well, Ali P x
Admit to freezing episodes to the DVLA and see what they say. Freezing comes on suddenly and could do so when you are driving and unable to pull in somewhere; dual carriageway, motorway, heavy city trafffic.
You summed it up concisely... the unpredictability of the condition, and,the implications of wearing off periods. Think what may happen if you haven't disclosed the full facts to the DVLA, your freezing episodes, and you have the misfortune to be involved in accident, which may not be your fault, but they look more closely at you and the incident and your Parkinson's is discovered. Maybe that accident caused a fatality. You would have to live with that for the rest of your life. Well, that's up to you but from what you have described of your condition, think seriously before getting behind the wheel again.
As Island Mike said, if you fill in the DVLA form and do not admit to freezing episodes I think you may be on very dicey ground and possible prosecution for not declaring the fact, as may your neurologist as they also have to fill in a form declaring your fitness to drive.
I think that you are being at the least reckless, and, at the worst, irresponsible, and also setting back the cause of those with Parkinson's who are responsilble and honest in their dealings with the DVLA, and other organisations in their actions, but when they find out about those that choose not to disclose their true situation, and tar all with the same brush of hiding material facts, everyone suffers the same fate.
I liken this to PIP claims that are exaggerated and submitted far too early to be accepted, thereby jeopardising the chances of those that really qualify.
Thank you for you’re advice benji, I take on board what you’ve said, although maybe a less aggressive manner would be more appropriate. I am not uneducated, nor stupid, nor have I ever made my condition look better than it is to the DVLA nor my insurance company.....both are fully informed. You have made an assumption of my judgement and declared me unfit and unsafe. I am deemed fit and safe by the DVLA and my insurance company to drive and when I am having a ‘good’ day, I will drive.
With regards to ‘freezing’ issues, I think you perhaps do a little more research. are you suggesting that the majority of pwp give up driving?
I have certainly never inflated my symptoms to receive PIP payments, and indeed to date never qualified for mobility. As my post was intended to hilight the plight of pwp applying for PIP, and as PUK are also hilighting these issues,
i would appreciate it if the admin team could review my post and subsequent replies and if necessary delete this thread. I think you may find Benji that a lot of pwp will be rather upset by your confrontational viewpoint. Surely this forum should be a place to come to for practical advice and support....not to have a finger pointed and to be accused a liar and fraud.
I think there has been some interesting and open discussion on this thread, which we encourage, but please make sure you remember the forum rules. Disagreement is absolutely fine but just be careful and think before you post, it's not fair to label others behaviour if you don't know the whole story.
It's easy to read in to posts and sometimes make assumptions, we're only human. But please be respectful. It's also worth remembering that if you feel offended by a post, the other user has most likely not meant to cause offence at all.
You can read the forum guidelines here https://www.parkinsons.org.uk/content/forum-rules.
Thank you Benji
I DO NOT drive if I am likely to wear off or freeze.
Please see the link below regarding freezing.
I have never worn off nor froze up whilst driving, freezing occurs in pwp mainly when walking.
I don’t drive on motorways, and never drive long journeys, in fact, don’t drive very often
i hope this clarifys things for you. Please feel free to pm me at any time if you need further information.