New comer

[D0ttieL0ttie]

My husband was diagnosed in 2013 with Fronto-Temporal Dementia, aged 61. He has now had that diagnosis changed to PSP. I have been researching PSP and came across this website. Having looked at the information about PSP he certainly fits into this awful disease. I am his full time carer. I don't have any questions just yet but just wanted to say 'Hello'

[NannaB]

Hello D0ttieL0ttie, what a great name!  Welcome to the site but as we always say, sorry you had cause to join us.  You don't have to ask questions to post.  It's good to read about a variety of things.  We share funny stories,  Georgepa writes wonderful descriptions of his beautiful county, we can rant and rave when things go wrong and give and receive virtual hugs.  If you let us know which country you live in, folk from the same country will make themselves known to you.

This community has helped me so much, I'd be lost without them and are pleased you have found us.

Nanna B

X

[D0ttieL0ttie in reply to NannaB]

Hi Nanna B. We live in Cambridgeshire in the UK. I love to share funny anecdotes. I rant sometimes too!! I love my husband to the moon and back but as you will know it can be extremely tough and challenging at times. Thanks for responding. 

[jillannf6 in reply to NannaB]

ii agree 

lol jill

[easterncedar]

Hello back to you!  I have learned so much on this site; I can't imagine how I would have coped without it.  So, welcome.  I'm glad you found us.

[LynnO]

Hello DOttieLOttie,

Your husband is just 3 years older than mine.  Sorry you have the opportunity to join us, but since you're part of the "club" this is a great place to be.  A lot of wonderful people and very good information. You never need to feel alone. Take care of yourself while you care for your husband!

LynnO

[D0ttieL0ttie in reply to LynnO]

Thank you everyone for your lovely comments today, as I join your 'fold'

I do have a question and ask if anyone has experienced this.

My husband is being referred to ophthalmology to see if they would consider Botox treatment for his levator inhibition/blepharospasm. (Basically what that means is his left eye won't stay open). I understand that if they do this his eye will remain open and need drops. Has anyone got any feedback / advice please?

D0ttie L0ttie

[aicebeall in reply to D0ttieL0ttie]

hi dottie lottie-  I like your name too.  good luck with the optamologist.  good luck with everything  -alice

[LynnO in reply to D0ttieL0ttie]

Sorry, we haven't had to have that done yet. My husbands eyelids will stay closed for a short time, but so far he is able to open them most of the time.  Our dr. suggested to open the eyelids with his fingers and sometimes then the brain will keep them open. Iit has worked for B, but maybe because it's not an all day event.

[PUTLAND in reply to D0ttieL0ttie]

My husband has been getting botox on both eyes for approx 3 years. It has been a great help, the eyes dont stay open all the time but now and again he could use Natural Tear drops. Have a good chat with your eye specialist. Good Luck.

 

[aicebeall in reply to LynnO]

hi lynn, o i have psp am in us  santa rosa, cal. i am 67.  where are you in the states  thanks, alice

[LynnO in reply to aicebeall]

Hi Alice,  we're in Missouri. How long have you had symptoms?

[Yvonneandgeorge]

Yes welcome to our family xxxxxx

[abirke]

Hello and sadly, welcome to the site.  This is a great place to be to rant, rave, understand, educate and be educated. Many people actually are patients of this disease/disorder but most of us are caregivers.  If you have any questions or ideas , please feel free to share them.

My husband was diagnosed in 2013.  I quit my teaching job and now am becoming a nurse, a dr , a researcher and an engineer!  This happens to all of us as we find better ways to help our mate and ourselves attain a decent quality of life or as the cliched term goes, a "new normal".  I have also regained spiritual strength as I realize this all bigger than me and I need the help of my spiritual power to maintain sanity.

So I suggest that you put away what used to be and forge in to what needs to be whether that be telling the dr what PSP is, making a new urinal for your husbands more efficient elimination, or getting on your knees to ask God for strength and peace and confidence in knowing you are not alone; you have Him and us. Again welcome to this site. 

AVB

Cast thy burden upon thy Lord, and he shall sustain thee: He shall never  suffer the righteous to be moved

                                                                     Psalm 55:22

If any of you lack wisdom, let him ask of God that giveth to all many liberally. and upbraideth not; and it shall be given him.

                                                                   James 1:5

[D0ttieL0ttie in reply to abirke]

Thank you everyone for your lovely comments today, as I join your 'fold'

I do have a question and ask if anyone has experienced this.

My husband is being referred to ophthalmology to see if they would consider Botox treatment for his levator inhibition/blepharospasm. (Basically what that means is his left eye won't stay open). I understand that if they do this his eye will remain open and need drops. Has anyone got any feedback / advice please?

D0ttie L0ttie

[abirke in reply to D0ttieL0ttie]

Not Bruce. His eyes do close, and sometimes he lifts them open but he seems to be able to keep them open when really needed; like at the gym or at the grocery.  Would it be worth it? Maybe try it once and base next decision on your experience!

Good luck

AVB

[Heady]

Hi, welcome to our very large family!  You don't need to ask any questions, unless you want to.  As you, no doubt have already  found, PSP is a very, long and lonely journey, that you are both on. This evil illness affects the sufferer and Carer, in equal measures.

On this site we are all Carers or people who have PSP, we come on here, to ask for tips, but mostly, just to get support from each other.  Lots of ranting and raving goes on, but so does a fair amount of laughter! Nobody can quite understand what we all go through on a daily basis, bar someone, who is experiencing exactly the same.  Feel free to express any feeling, nobody is going to judge, We have all been there, got the tee-shirt!!! This is a worldwide site, so any problems or queries will be answered quickly, great for those sleepless nights!

Really glad you have found us, I would not have survived, without the good folk on here, hopefully you will get the same out of it as the rest of us.  For now though, just know you are not alone.

Lots of love

Heady

[D0ttieL0ttie in reply to Heady]

Thank you everyone for your lovely comments today, as I join your 'fold'

I do have a question and ask if anyone has experienced this.

My husband is being referred to ophthalmology to see if they would consider Botox treatment for his levator inhibition/blepharospasm. (Basically what that means is his left eye won't stay open). I understand that if they do this his eye will remain open and need drops. Has anyone got any feedback / advice please?

D0ttie L0ttie

[teej in reply to D0ttieL0ttie]

Dottie, my Mum has the opposite problem, her eyes stay open and she has a very slow blink rate due to PSP.  This gives her dry eye which waters all the time.  She has drops for it but the eyes are the ONLY symptom of PSP she complains about. (She has some pretty bad symptoms too!)  It is a constant source of discomfort for her.  She has tried all kinds of treatments but none can give her adequate relief. Her neurologist has mentioned that botox does work for a very small number of PSP patients but the success rate is very low.  I rarely post on this site but reading others questions and comments has been so helpful in facing this illness.  It really is an incredibly supportive place.  (You can recieve daily emails with everyones comments if you register)  If you scroll through recent posts you will see a number relating to eyes which may be useful for you.  I guess one thing to remember with Botox is that it is not permanent so if it causes a problem, it may be only an issue for a few months.....  Love and support to you and your husband xxx 

[Heady]

Sorry Dottie, S has not had to have this treatment so far!  I understand others have, hopefully, one will respond to help you.

Lots of love

Heady

[Hidden]

Hi Dottie, I would also like to welcome you to the site.  I cared for my partner with PSP until he died in January this year but I keep on following this site as the people here feel like friends after all we went through together.  There is hope for my weaning myself off this site as I now rarely comment!  However, having read your post I wanted to say that use of Botox is, I believe, much more common in US than Britain and have you found curepsp.org?  That is the equivalent of this site in USA and you'll find more information on botox there.  Good luck.

[Gracie_Girl]

Unfortunately, I say Welcome to the site even though it's under such sorrow that you have to be here. I'm new to this site myself, but you will find that the lovely people here understand what we are going through and offer the best support you can find. Also, they have more answers than some of the doctors out there. Don't be afraid to ask questions and vent when you need to. Everyone here is a blessing.

[nannie1]

Hello welcome good site to be on and ask as many questions as you like as there is always someone who can help you.xx

[steph02]

hello dottie  I t too was  diagnosed  with  psp in 2013  but  pobably  had it   for much longer but  i seem to  be blessed  with a  milder form than  most of the people here. I  tend  to  have about one  or  two falls  every  day  but   these  are controlled  falls,  and i never  hurt myself. my  long suffering wife    tends  to  treat me more  like an invalid which  is  slightly annoying as I am  quite  independent. and can  look after myself. Just  remember  that  everyone  is different and we actually  know   very  little  about  this disease

[GillJan]

Hello, sorry you have had to find this site, but it is enormously helpful. My husband is 3years into journey and was also initially diagnosed with Frontal Lobe Dementia, it took us 18 months to get the correct diagnosis. There will be, a you know, tough times but I try to concentrate on making memories whilst still possible. I have just finished reading a book by an American lady called Last Dance at the Savoy, really recommend it, it puts my feelings into perspective and shows that I am being hard on myself too. Its not dramatised, its informative and helpful. I have read certain passages to my husband that confirms things where I am trying to get him to realise and understand things. He now realises I am not saying it for the sake of it but that others are finding the same. I know there are quite a few of us carers who are reading the book right now. Yell, rant etc as and when necessary.

[Katiebow]

Hello and welcome to this wonderful site, such good support and sound advise. I have found most of my PSP info here and also been able to write my worries and fears knowing others have been through similar emotions. I hope you find it to be helpful too. Xx

[9790]

Hello from California. My Mom was diagnosed in August 2015. 

[TCM19]

Hi my mum has botox treatment around both her eyes to keep them from shutting by themselves. She started having it every 4 months, but now has it every 2 months as it seems to wear off faster now. She can still shut her eyes no problem with having it and doesn't need any drops. It is a brilliant treatment for blepharospasm and she is so much happier after having it done rather than sitting there with her eyes closed and having to manually open her eyes with her fingers.

[KJN99]

Exactly the same happened to my husband. It's good to know the correct diagnosis.