Ali Newland (she/her) 💙🧡

Hi all. I have made the decision to limit my use of social media. Therefore I won’t be using Twitter anymore. Thank you to you all for your support and I wish you all the very best in life. xxxx

@FndFightback Yes.

Do any fellow #FND patients suffer an exacerbation of symptoms during periods of hot weather?

@DanTee2Tech Thank you xx

1 Had a bad week. Blue lighted to A&E with stroke symptoms. Tests came back negative. My #FND and #dystonia are playing up. Was in hospital for 3 days. Usual symptoms are starting to ease. New symptom: struggling to swallow. On level 4 diet of puréed food.

@Sarah_says_hi Thank you x

7 Things are changing for those of us with #FND but it’s slow. I’m thankful that I was able to go to Parliament with @FNDHopeUK to speak with politicians who can help bring about real change. I may not feel that well, but I do feel encouraged by my experience. Never give up hope.

6 …the physio I had during my rehab @WolfsonNeuro as a follow up. I have never had such positive care and treatment from local services. The last time I ended up at A&E at this particular hospital I was told to go home, take paracetamol, forget about it & it would be fine!

5 I have been referred to see a local neurologist & have another scan to triple check all is ok. I have already had 2 visits from community neuro SALT to help with my swallowing. They are also going to contact the neuro physio that I have seen following a referral made from…

4 On a positive note, all the medical staff I saw seemed to know about #FND & were interested to speak to me about my experiences to learn more. I saw doctors, physios, OTs, Speech & language therapists & nurses, & all showed kindness, compassion, care & respect. #fndaware

3 …of fluids due to my catheter & #chronickidneydisease #CKD and the hot weather. Also had to change how I take my meds as I can’t swallow tablets! All good fun! Still have muscle weakness, loss of sensation, numbness, pins & needles, extreme fatigue. #swallowing #dysphagia

2 Level 4 diet is more difficult at home. I am not really hungry. I can’t do much physically so totally reliant on family to provide thick custard, thick yoghurt, thick soup, puréed veg, creamed potato, Ready Brek etc.I need to make sure I get the right nutrients & need plenty…

@Thrivingwdisabl All of the above. I love listening to all sorts of music. I think it is especially the process of writing a song, writing & making a musical accompaniment, then singing/recording it & then hearing the final product that I find particularly therapeutic.

@alinewlandious Playing, singing, writing, listening, or all of the above?

By working on Thriving While Disabled, I help prevent #depression or getting stuck in an #FND symptom feedback loop. While working I sometimes get so “in the zone” that I’m much less likely to have symptoms! What puts you in that kind of headspace?

@UkBackintheDay Awww! Look at you with your blonde hair!! Love it!

@FionaHutchison3 xxxxx 🙏🏼

Tomorrow is the big day kidney and tumour removal hopefully I will be cance free after this operation to be in hospital for 7.30am wish me luck guys please 🏨

@NeuroAlliance Very sad.

Despite 40+ organisations calling for a wider range of neurological conditions to be in the strategy, yesterday's Major Conditions Strategy call for evidence focuses on just a few areas. Government must reconsider. Read our response here: bit.ly/3BVmJG5 #Backthe1in6

@FNDHopeUK Very sad.

It's really disappointing that FND is not part of the Major Conditions Strategy 😕

@FndLifewith So sorry to hear you have been struggling. We all get those times when things get too much. It is a tough road but you are a tough person. You have got this. x

To those of you who may feel like you’re drowning and overwhelmed by emotions, please know that you aren’t alone and when you can, try to reach out to someone so they can walk alongside you 💚 #MentalHealthAwareness

Mental health awareness week. For the last week I’ve experienced what I now recognise as a depression episode. I was struggling and hurting before last Friday but by Friday I was in a state which I’ve not been in before to a level I’ve not experienced.

@Brain_Tinkerer @FNDHopeUK @AlanCarson15 @CourageousClair @TomPlender @Yvette_OT @FndRecovery @mazcatterall @neuroads_lab @FND_Together Brilliant! Thank you so much for raising awareness and funds to help the FND community.

Thank you all for your wishes and support - I achieved my personal best (PB) in the #TCS #LondonMarathon @FNDHopeUK @AlanCarson15 @CourageousClair @TomPlender @Yvette_OT @FndRecovery @mazcatterall @neuroads_lab @FND_Together @alinewlandious