Woozy

[Mybeautifulfriend]

Does anyone describe the feelings of PSP as Woozy? Drs will not definitively say if my friend has PSP but they did say it was a possibility. Sadly, she has many of the symptoms described here but the main one is a feeling of "drunkenness" or 'woozy".... very very fatigued.

[Hidden]

What l have learned from my mom's PSP diagnosis & this forum: PSP is not an easy illness to diagnose. Mom went to many doctors for years & had numerous test because she was determined to find out what was wrong with her. Shortly before her diagnosis she shared with me that she feared doctors, family & friends thought she was making up stories about her varied symtoms just to get attention.

Personally, l believe woozy is one word that might discribe a symtom of PSP but it also discribes many other illnesses. I hope your friend uses a cane, walker or wheelchair to help prevent falls.

I hope your friend has had an eye exam recently. Mom's eyes helped guide doctors toward her PSP diagnosis. Sending hugs to you & your beautiful friend... Granni B

[Kevin_1]

Hi Mybeautifulfriend

Agreeing with Mottsie.

My wife described it like being drunk.

If you are in the UK you might ask for a referral to a tertiary neurologist, if you are not already seeing one. Local neurologists are generally second level. They are the first recourse for a GP referral. Complex neurological diagnoses and treatment is generally done by a tertiary neurologist, one step up the specialist field.

I hope this helps.

Best to you both

Kevin

[Marie_14]

That is the exact word my husband used at the beginning. He also went to the Supermarket one day and came back feeling very upset. He said he couldn't walk in a straight line and he must have looked drunk. That was the day we got a walking stick! Fingers crossed for your friend. She is lucky to have you as a friend.

Marie x

[doglington]

Yes. That is how my husband was for a couple of years before diagnosis. I agree with Kevin. Ask to see a neurologist instead of chasing all the other symptoms as we did.

However I hope it is not PSP as there is nothing to offer you.

Jean x

[Mybeautifulfriend]

She's seen a few neurologists - ruled out many other conditions - i think just hesitant to label it PSP cause we all know what that means Thanks so much everyone.... be good to yourselves...

[mbliese]

Woozy is the exact word my mom used to describe her symptoms. It wasn't exactly feeling dizzy, but woozy. We went to neurologists and many of them were unable to determine the cause. It wasn't until we went to Mayo Clinic that we got a solid diagnosis. Wishing you the best.

[Hiking13]

My husband felt like this for a long time before he was diagnosed. Thinking of you and your friend.

Sarahx

[FionaC82]

My mum said the exact same thing that she felt woozy. She was diagnosed with PSP in late 2016. Since then she has detiorated quite a bit from the strong independent woman she used to be to now not wanting to do much. She had a walker but prefers to use a stick.

PSP is horrible and is taking my mum away from me slowly day by day.

On a personal note I find hard to cope with some days and get very upset. I wish there was some magic pill that would take this horrible disease away.

[HilsandR in reply to FionaC82]

Hi FionaC82, your last paragraph will ring bells with pretty much all carers on this site, including me. My husband lost his 8 year battle with PSP last October and looking back I wonder how the heck I got through it as it batters you physically and emotionally. My key to surviving was getting regular time out for myself, even if that was just coffee with a friend. I was fortunate that I had a good network to help me get these breaks but I also made sure we had friends over regularly so that my husband felt included. I also made sure I did things with him that we could both enjoy, outings etc albeit that got quite difficult, but making good memories for as long as you can is important. Make sure you shout for help through whichever channel you need to, I know there can be a postcode lottery as to what help you can get but it is out there and sometimes you just have to keep pushing for it. Have you looked into whether there is a local PSP group near you where you and your mum can meet others in the same situation - not for everyone I know but for many these groups have proved a lifeline. You do sound like you are struggling and my heart goes out to you. If it helps, just keep posting with your fears and anxieties, there's always someone on here ready to listen and respond, don't bottle things up. I'll stop rambling, your post just reminded me of what seemed a relentless journey of feeling so alone and helpless, but I did make it through and now on the grief rollercoaster, actually a second bout of grief as we grieve for the person we are losing whilst they are still with us. Don't be alone in trying to deal with this. Heartfelt good wishes, HilsandR

[FionaC82 in reply to HilsandR]

Thank you for your message. Luckily we have a good family and friend network who come to visit mum regularly. My dad is my mums primary carer but mum can still do quite a bit for herself.

I’ve been to the PSP meetings but mum got a bit upset and didn’t want to go again. Personally I haven’t been since but would like to in the near future.

I’ll use this network as a sound board for my concerns, questions and fears.

[HilsandR in reply to FionaC82]

My husband's response to the first time we attended a local support group was "what on earth did you bring me here for?" I hadn't factored in that we would be meeting people at all different stages of the illness and it was hard to see. He refused to go again so I didn't push it. I'm glad you have a supportive network around you and that your dad has a lot of support. The carer can become invisible. One day at a time was my motto, no 2 days with my husband were ever alike so living in the moment instead of trying to anticipate what the next week/month might bring helped me get through. Keep your chin up. HilsandR

[Kaylewis]

Very fatigued yes.

[Katiebow]

My late husband used to say he had the feeling of being drunk, took a year to diagnose once he went to GP.he wasn't referred to neurologist until requested and it was quickly diagnosed then. It was the lack of eye movement that he was first interested in along with his walk/gait. Diagnostic tests revealed the 'humming bird effect' Devestating news and very hard for him to accept, which he didn't for a good few months.

Love Kate xxx

[easterncedar]

My guy often complained of feeling wobbly.

[Kbaker1]

Yes my mum feels like that all the time. Dudley Moore has PSP and he was always labelled as drunk by the press before they knew his diagnosis

[AlliP]

My mum had PSP and she always said that she felt drunk , dizzy , she couldn’t walk in a straight line . She had to have some of her fingers chopped off , I remember 8 weeks from the end she was in hospital , I thought she was in a coma but as we left I looked back and said mum we will be back tonight to see you , she managed to lift one of her fingers to wave goodbye ! I know it’s very hard to diagnose PSP , I think from what I have read that to much tau - a protein builds up in the brain ! I

Know my friends husband was diagnosed privately ! We only knew what my mum had from reading an article in Daily Mail !

[Tunupup]

My sister always used to say she felt spaced out x

[Spin30]

Yes, woozy and extreme fatigue are my husband's most common complaints with PSP. The woozy is usually, but not always, at the same time his BP is very low. He faints fairly often. It is very frustrating because there doesn't seem to be a prevention that we can find.

Best to you and you and your friend,

Sally

[Mags061155]

Hi yes I also have the same feeling as your friend and I was diagnosed with PSP in November 2018

[Mybeautifulfriend in reply to Mags061155]

Hey There...I'm so sorry about you Dx. How did they confirm PSP?