Progressive supranuclear palsy and lightheaded

[Wayne18]

I’ve had psp for almost 4 years and always feel dizzy/lightheaded. Has anyone else experienced this and if so what have you done to resolve issue?

Vertigo , medication, blood pressure and vitamin diffidence has been ruled out.

Any suggestions would be appreciated.

[Kelmisty]

Hi, my Mum has PSP and CBD, unfortunately the light headed and dizziness is all part of her illness we’ve been told. There’s no drugs to help it, and some drugs for other symptoms have made it worse.

Mum said it’s varies on extremity’s but is always there, she finds it very tiring. X

[Wayne18 in reply to Kelmisty]

thank you for your response. Hard to hear and it is difficult to deal with. Wishing your mum the best.

[Sun-flowerwearer]

hello Wayne

Sorry to hear you have the disease. My husband has PSP and one major symptom he complained about from very early on was fuzzy head, feeling dizzy and deceived it as feeling his head was full of cotton wool slowing him down. He couldn’t shift it and I’d say it’s remained with him as a constant for years.

I think it’s a common symptom unfortunately of the illness.

[Wayne18 in reply to Sun-flowerwearer]

Thank you so much for your response.

[mumnme]

My mother also has PSP and dementia, although I feel the PSP is more prevalent. She struggles to keep her eyes open and feels tired and extremely dizzy all the time and her head feels heavy on her shoulders. She is mostly confined to a wheelchair, although can walk with her walker with assistance.

She coughs after drinking, so now has a cup with a straw to try and limit the amount she can take in, in one sip.

She lives in aged care and I take her home overnight, each fortnight for the night, but must sleep with her and shower and take her to the toilet as her balance is just not there.

I really wish there was more I could do for her as seeing her suffering is very depressing.

I am an only child, so all the responsibility falls on me for her financial and medical. I work full time and 1/2 my wage goes towards her care home. I visit daily with Sunday's to myself, but other than that, I dont know what else I can do.

I wish for this to end for her as does she as there is no cure nor solution to her ongoing and increasing disabilities. She asks me what will my end be like, an answer no one has.

So sad. Sending strength to everyone that is inflicted with this dreadful disease.

Love and Peace x