I know we have all suffered and some of us still do, with really severe symptoms and circumstances. I am thinking especially of you, Sallyannl. I manage fatigue, a pain score of 10 out 10 in certain areas every afternoon/eve and muscle weakness BUT I believe in all this hardship it is important to have something positive.
I am not very good at selling myself. If I did not have P.A./B12D, I would not have focused my studies in this area. I have finished my Diploma in the Gut-Brain Connection. I wrote many essays which aren’t my forte. I am motivated not only for my own health but for the community, we are poorly treated, misdiagnosed and for those who in the future will become symptomatic.
I did pretty ok 😳 95 % (feel very awkward writing that).
It does not mean I know everything as that is impossible.
Sending everyone my best wishes.
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Narwhal10
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Narwahl10, I cant thank you and everybody enough, with out you all helping me talk to people who understand would of sent me crazy .... which I am Not ... Its the frustration of dealing with it all, and the very people who are entrusted to us via the NHS letting us down.
I am glad I have experienced the worst of this, with my mum, and my self but that doesn't mean I do not feel the pain he is suffering. It might not be the pain Physically but I still feel his pain.
Of course, it must be truly awful and frustrating going through the whole process with your mum, yourself and now, with your partner.
The emotional pain is really difficult. To see and be with someone you love and care for can be demanding and draining. So, you Sallyannl must have support where you can to lighten in anyway, shape or form the burden.
P.S. We have special nerve cells called ‘mirror neurons’ so we can interpret others facial expressions, noises so know when they are happy, sad, in pain or unwell. So, yes you can feel your partner’s pain x
Well done you, 95%!! 👏👏 You give hope to everyone who is afraid that was it for them, they'll never get better. I too once despaired. It's important for people to see it's possible, to have hope, a goal.
We do need someone like that to bring this to the light. I've actually been looking for someone famous who suffers this or loved one does. There has to be someone.
I too have looked and looked, I’ve always loved movies so tend to go for actors. The only person I’ve found was Gunnar Nordstrom who died of P.A. He was a Finnish physicist and him and Einstein were in friendly competition with their theories.
I am a big fan of Melissa McCarthy and her cousin, Jenny McCarthy who is a model and actress, was married to a director John Asher. They have a son who was diagnosed with autism. Jenny put her son on a gluten and casein (protein in dairy) free diet, did some other complementary medicines including chelation (removal of heavy metals), multivitamins and vitamin B12 injections. Apparently, her son is pretty well !!
Wow Narwhal10, that sounds very encouraging for the autism.
I found that Mary Todd Lincoln. President Lincolns wife, died of PA but at that time thought she had gone mad. Now they think it was PA.
I love Melissa and I didn't know Jenny was her cousin. I know someone who had chelation for a blood issue. She had to inject her own Plasma into her belly daily.
My wee Irish Granny used to always say that if any of the royals developed a condition, money would be thrown at finding a cure. A royal with PA might help n with the struggle which as we know is real x
In my case, it’s a broad Glasgow accent, not as kind to the ears.I bet the QM didn’t have to put up with her GP telling her she’s only entitled to an injection every twelve weeks. She lived to a good auld age as has the Queen. Interesting! x
That’s a lovely letter Narwhal10 🥰 your a very kind person always there to offer advise, you Jade and Sleepybunny are always about helping others and your selflessness shines through 🌟even when your dealing with your health journey you forget yourselves and focus on what you can do to help other people.🤗
If the world had more of people like you in it, it would be far more wonderful place, thank you again for all you do
We are a community and I myself would have been totally lost without it. When I stumbled across it, nearly two years ago, I was given direction, practical and emotional advice. The support I have received has been invaluable, people gave me their time and energy. I am eternally grateful to them and am part of something.
You have done so well.As a student with B12 deficiency, there must have been plenty of times when you did not see how you could complete - let alone get 95% !
Martyn Hooper was a teacher before he got PA. He is now educating medical professionals, among others, about Pernicious Anaemia and B12 deficiency. On the Pernicious Anaemia Society website, there is a single page poster detailing how you could help, as a teacher, students who have B12 deficiency. I put this up in classrooms when I was teaching, so that the students could better understand my condition, and so that any student with the same would know that there is support available.
(A bit like wearing rainbow laces in your steel toe-capped boots on a building-site - a signal of support).
One of the things I most love about the people here - there is so much care, advice and kindness. However ill people are, they give back, whenever they can be of help.
And that is you in a nutshell - plus you made me laugh !
Everyone here knows the hardship we endure. It is a really great idea about the poster. I will definitely have a look at it. But as a student having that support is invaluable.
Erm, I was very fortunate many years ago to have a great tutor who juggled so much professionally and personally. They ‘committed’ to writing 2 sentences of their Masters dissertation a day.
I still ‘pace my days’ so, I paced my studies. I do own a t-shirt that says ‘Nerd’ as when I have reasonable cognitive function, my concentration levels are pretty good. For example, the whole Liverpool football team could come into my home and I’d be totally oblivious.
My satirical, quirky humour isn’t everyone’s humour but it keeps me amused.
Many moons ago, I programmed computers. I avoid most ‘techy’ things now and this is my limit 🤣.
Narwhal, You might be totally oblivious, but if I didn't pass out at the shock, I would welcome them especially Mr Klopp himself. Over 50 years along with the ups and downs, remind you of anything ?
you might of programmed computers (clever you) I am still getting my head around them ... If only I could ........ ah forget it I will get by.
Keep going you never know if those stillettos will one day coming in handy. Reach for the moon.
Wouldn’t it be amazing 🤩 if your footie team just turned up at your home.
Gosh, computer programming - very boring and tedious. If you missed out a full stop or a comma in your 40,000 lines of coding Computer said NO.
I can liken it to P.A./B12 D; Doc, I want to walk across the room but my legs won’t do as they are told. I can’t find the right words, can’t remember how to pronounce words and my sentences are jumbled.
We are all on this journey, with our own little ways. Finding pleasure where we can.
C’mon Narwhal, have you switched it off and turned it on again?🥴 Congratulations on your results, I don’t know how you did it. My once good brain has turned to mush. It must have been a struggle for you but 95% is a brilliant result. Well done you xx
Thank you very much. Yes, loosing cognitive function is really difficult and I do wish doctors would take P.A./B12 D more seriously. Our brains need oxygen and nutrients to function, ours have had a period of starvation to varying degrees and severity.
Yet, I doubt very much any of us have had any ‘Physiotherapy’ or rehabilitation unless of course you do it yourself !!
A big congratulations Narwhal10!! That is a very big deal and a score of 95! That is impressive. How wonderful to have that knowledge and be able to help others. Woo-hoo!! You go!!!
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