Ali Newland (she/her) 💙🧡

Wife, mum, christian, musician, songwriter, former school teacher, FND advocate, fundraiser and volunteer for FND Hope UK. All views expressed are my own.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@FndFightback Yes.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@DanTee2Tech Thank you xx

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@Sarah_says_hi Thank you x

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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!

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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…

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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…

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@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.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

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

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@FionaHutchison3 xxxxx 🙏🏼

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@NeuroAlliance Very sad.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@FNDHopeUK Very sad.

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@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

[Ali Newland (she/her) 💙🧡 @alinewlandious]

@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.