I have PA and have a diagnosis by a doctor of such. It manifests itself through physical and mental health conditions. For me, I have hearing loss (I am not deaf but, for example, struggle using the phone. I am not sure if this is caused by PA), difficulties walking (although I can walk slowly and for short distances), nausea, headaches, breathlessness (which may also be heart related) and various pains. I have palpitations, although these may relate to a heart condition. I suffer from serious, debilitating exhaustion for much of the day. It is the mental impact which I find harder.
My memory is seriously impacted
My cognitive function is impacted. I am struggling to work (I am a freelance writer) because I cannot research and remember what I have learned. I also cannot find the right words. Not great for a writer!
I suffer from brain fog and confusion, cannot concentrate or keep focus and cannot think quickly or process information quickly. I cannot hold more than one thing in my head, by which I mean I cannot multi task at all. I also have mood swings and depression. I have intense anxiety.
I am able to function to an extent. I still drive, for example (thank goodness for sat navs though). However, my life is impacted (and that of my family). I have had to change my work to allow for the condition, I struggle on the phone badly, cannot make a coherent argument some of the time. My physical discomfort also makes functioning hard, for example I cannot manage to be on my feet for long, I struggle to climb stairs. Anything requiring memory is very difficult, eg cooking, shopping and, again, working. I am being treated with B12, but mostly it is yet to have an effect. I've been taking it about four months, and my doctor says it could be one or two years before there is a noticeable effect. He will not be drawn on whether my cognitive function and memory will return.
I realise this sounds like a whinge, and is how many PA victims live day to day. However, I have a minor issue with a public body coming up, something I wish to fight. They refuse to make any allowances for my condition. I believe that the Disability Discrimination Act 2010 requires them to make allowances. I am just not sure whether this Act applies to PA sufferers. It talks about medical conditions which impact on daily living, and also on progressive conditions such as multiple scelorsis. (I also have a number of heart conditions). I would argue that PA is also progressive, and also impacts on normal daily life. But would welcome advice or guidance from someone with greater understanding of this than me.
Thanks for any help.
Written by
BleekerStreet
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It can be a very serious disability. I myself was practically bed bound for 6 months. The safest way for me was wheelchair use.
Now, if I filled out your symptoms and answered the questions on the Department of Works and Pension’s Personal Independence Payment form, you would be awarded quite a lot of points and receive benefits; in my humble opinion.
Especially as :-
1) Difficulties walking.
2) Nausea and headaches.
3) Breathlessness
4) Various pains.
5) Palpitations.
6) Debilitating exhaustion.
7) Memory and cognitive function. If someone took you to a strange place and said walk or drive home on your own, without satnav could you do it ? You’d be in pain, short of breath, your anxiety levels may go up further. The only option we may have is to flag a taxi. We haven’t been capable of our own volition. I have sat on pavements gasping for breath.
You will be surprised how much you have already adapted. I rarely speak on the phone. I am introverted anyway. Tip - do everything via email or text.
Yes, Disability Discrimination Act (2010) does come into play for you. P.A. impacts our Daily Living Activities can you, BleekerStreet, read, communicate, socialise, walk in
i) A safe, acceptable standard ?
ii) As often as you need (we are too exhausted, breathless, in pain) ?
iii) In a reasonable time ?
The Human Rights Act (1998) comes into play too. Fairness, Respect, Equality, Dignity and Autonomy.
I recommend speaking to your local Citizen’s Advice. They can signpost you to further organisations or give advice. The link is set to England.
I will help everyone I can. My journey has been long and hard but I made it. Nobody knows how difficult it can be except us. P.A./B12 D is so needed for the brain and minds can become completely addled.
How often are you getting injections? I was just like you. Almost an invalid. And I daren't even drive as one of my early symptoms was brief spells when my mind sort of disconnected for 10 to 20 seconds. But with lots of B12 I got better very quickly. Within 4 months. I don't think you are getting enough B12 to heal. Just enough to stabilise you. I think you need to experiment with larger doses like Wizard6787 to get better. Then you won't need to be registered as disabled.
I was having them every other day, self injecting. My doctor said I had plenty in my system, the issue was absorption. He reduced my injections, but is monitoring it because I have been a bit worse since reducing them. Thanks for your help.
I was the same, thought I would never recover. However I inject daily and after 1.5 years I started recovering. Now at nearly 3 years I do quite well in comparison.
The most important thing you can do is inject daily or at min every other day. If you can't get the doc to help buy your own supplies and start self injecting. That's what a lot of us do here. I found it was a waste of time and money to work with docs unless I had some other issue like thyroid because for PA or b12 deficiency all you really need can be done on your own. No tests are needed to check b12 levels as the levels won't be accurate. So the progress is based on clinical symptoms m, as in how you are responding. Don't let anyone convince you to space out your injections. It is a waste of time and just makes recovery take longer than necessary. The recovery may take 2+ years. But I think you'll be surprised at how much recovery can be achieved. I was at least.
I takes 4 years for the b12 stores in your liber. To deplete, this it takes a while to recover. Many days of daily shots.
it sounds like you need more frequent B12 injections. How often do you have them? Have you considered self injecting, as most of us have to do? Also, with PIP it is how your illness affects you that matters more than the actual illness.
Your doctor has said something very important to whether it is a disability, they told you it could be a year or more until you see a recovery.
Public bodies are ruled by the Equality Act.
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection
Good luck, I agree with others that you don't appear to be getting enough B12. I would also say that my daughter is also suffering hearing loss, but this does seem to be improving with an increased regime of B12
Thanks. That is helpful. I certainly think it is worth approaching the body with whom I am in dispute and making the case that I have a disability as a result of my illness.
If you are talking about a PIP application, it's not the illness that counts, but how it affects your daily life. If you are currently needing a lot of support to help with things like eating and drinking, washing and bathing, planning and following a journey then you may qualify. If you manage without help and support from others, you're unlikely to get it. You can do a quick check to see whether it's worth applying here: benefitsandwork.co.uk/perso... and if you go ahead then it's a good idea to follow a guide such as: citizensadvice.org.uk/benef... when filling in the form be clear about what help you need and how often you generally need it. It will help tremendously if you have evidence such as supporting statements from people involved such as a carer (even if it's your partner or family member) and professionals such as social prescribers, mental health nurse, health visitor, family support worker. If you can give them a name of a medical professional who is familiar with your struggles they can contact it helps. I've seen one this week not awarded because the GP who filled in the form had never met the patient and just filled in as N/A after every question resulting in the person losing their PIP (we have since gathered evidence which we are submitting for mandatory reconsideration?.
"Disability Discrimination Act 2010 requires them to make allowances. I am just not sure whether this Act applies to PA sufferers. It talks about medical conditions which impact on daily living, and also on progressive conditions such as multiple scelorsis."
I have MS and some of your symptoms sound very similar. As far as I can remember the Disability Discrimination Act doesn't specify the title of the ailment just refers to the end result. Disability comes in so many guises.
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