its PSP curable ?

[pthalo]

I am new here and in New Zealand . I haven't had a diagnosis but a specialist at the eye clinic said I probably had some form of it . I have lost the ability to form words . I can make sounds but they are not coherent. I have great trouble reading because my eyes get fixed. I was interested in your questions when I joined this forum . " Do have you pSp or have had it. It suggests that it is curable. Does anyone know if it's curable.? I've had two brain MRI's and they were normal

[Hidden]

It is not curable. It’s hard to diagnose.

[pthalo in reply to Hidden]

Thanks Jeff

[raincitygirl]

Welcome to the group, pthalo

Have you had a diagnosis from a tertiary neurologist or a movement disorder specialist?? Do you have falls? My husband had CBD (also covered by this site). The wondering what the h___ is going on while waiting for a diagnosis is hard!

You'll find this a caring and informative community and we have other Kiwi members 😉

Anne G.

[pthalo in reply to raincitygirl]

Thanks, I don't have falls though I notice my strength is depleted . I have breathing and swallowing problems.

[MaddyS]

Hello Pthalo. Hubby had two scans, both normal. You need a neurologist to examine them to spot the damage caused and give you a definite diagnosis of PSP. There is no cure for this disease yet, there is hope that a cure or treatment will be available in the future. You will find all the information you need on this site. Feel free to vent your anger or frustration here, we all know how you feel. All the best, love Maddy x

[pthalo in reply to MaddyS]

Thanks Maddy, I feel as though I've been given a death sentence with the specialist even suggesting it . I know that something is wrong but I don't want to create PSP because he suggested it.

[raincitygirl in reply to pthalo]

Yes, it's hard to do, but don't make assumptions until you've got a diagnosis from the appropriate specialist! Hopefully you've got an appointment coming 👍

Anne G.

[pthalo in reply to raincitygirl]

Thank you Anne for your feedback. I've had 3 years of appointments with specialists, since my voice started changing. It's been complicated by toxic thyroid nodules which were left unchecked. I don't have any appointments now and I'm not on any medication. That's good advice , thanks, Gill

[salem16 in reply to raincitygirl]

How does one get psp?

[raincitygirl in reply to salem16]

That still isn't known. There's no definitive evidence of it being genetic. It appears to be random, but there must be some cause that just hasn't been discovered. It is a "tauopathy" - an overgrowth of the natural tau protein in the brain. At least there is lots of research going on! Meanwhile, we read, we communicate, we fundraise, and we hope!

Anne G.

[salem16 in reply to raincitygirl]

Please I like to talk to you any new developments. Do u have relative with this.

[raincitygirl in reply to salem16]

Hi Salem; My husband had CBD and is now deceased.

Have you looked at the information on the PSPA (PSP Association) website? It gives a good overview.

How is your husband now?

Anne G.

[honjen43]

Welcome Gill! This is a very supportive forum and you will find lots of help here. People here face PSP every day and often know and understand more than some doctors. What you need is a knowledgeable neurological specialist! Hope there is one near you!

Whereabouts are you? I live in Hamilton, NZ. I know of 1 other in New Zealand diagnosed with PSP. They may be of some help in due course.

My husband was diagnosed with CBD after several years of health problems and an initial diagnosis of Parkinsons disease. He died in June 2016.

No. So far no cure has been found, but we all live in hope! Recent research into Parkinsons seems to have had 1 success with a brain infusion, which I remember seeing reported as considerably improving a man with the disease resulting in him being able to use a chainsaw, and woodworking tools with no hint of shaking or difficulty walking! I believe there is some work being done here using a grant from Fox Foundation.

Hang in there! Hope you get some answers soon.

Hugs

Jen xxx

[pthalo in reply to honjen43]

Thanks for your reply Jen. I'm in Auckland. I've seen a top neurologist and said it was a mystery. I'm sorry about your husband. I don't know about CBD. I read that PSP is related to Parkinson's disease only more so. I googled that my eyes don't blink independently and double vision, and it brought me to this site. Thanks , Gill xxx

[honjen43 in reply to pthalo]

Have sent you a private message. Look at the bell symbol on top line and it should have a figure 1 inside a red ball.

Hugs

Jen xxx

[honjen43]

Hi Gill, That's not so far away on a good day!!

Sounds like you could do with a 2nd opinion, top guy or not! If he has not studied PSP and other Parkinsons + diseases he may be out of his depth! We were lucky to strike a neuro here who was specialising in rare neurological disorders and was most helpful. The ward gerontologist was still happy to diagnose Parkinsons, even tho my hubby was falling apart daily! Think it may have had something to do with extra paperwork!

See if you can find where the Alzheimers and Parkinsons research is being done, as someone there may be more helpful. Meantime, battle on and keep a diary of your symptoms, so you can keep an eye on the trend, slow, sudden or gradual.

There is a brochure on this site that explains PSP and it may help to print it off and take to future appointments. (Sadly, doctors don't like patients googling their symptoms! No doubt, especially if they are accurate!) It may help them if they see the source of your info and how your symptoms fit.

Have you got family around who may be able to help you?

You will find it difficult to explain to others, but we all understand here! It is a most bewildering time when you are sure something is wrong, yet doctors can't put their finger on the cause. Keep investigating! That was the reason I joined here! And pushed hard to get further neuro consults.

Keep in touch!

Big hug

Jen xxx

[acorneater]

Hi Gill,we all know how tough life is for suffers and carers.As you know by now there is no cure at the moment.My wife is a sufferer diagnosed in 2016,she accepts her situation with difficulty and participates in research projects to hopefully help others in the future.We all wish you the very best and send you love.Acorneater.

[Dadshelper]

Welcome to the site. I'd definitely look at getting a 2nd opinion. These diseases are not curable. Safe exercise is the seems to work the best for maintaining yourself as long as possible. Unfortunately any doctor will only be able to give you an observational Dx as a brain autopsy is needed to fully confirm. Ask you any questions you may have.

Ron

[salem16]

I am sorry to hear about that. No I don’t have it, my husband does. I have a fatty liver which at some point I will have to have liver transplant. Right now it’s holding. Have to go on special diet, take meds . I also had vein surgery with blockages. I had ulcer on leg which took over a year to heal with new developed oxygen system from uk cost me $1300/mo. I not know what shoes like for almost 2 yrs. being on pension tough go. My husbands is not curable. He has the eyes now not able to see well and speech not able to get out. It was suggested I pad or talk and go. My daughters and I getting talk and go as hand movements are weak.

[demlac]

Hi pthalo

Im so sorry that you are going through the process of diagnosis, yes it is a mystery and can be quite confusing to the Medical professionals!

My hubby had a Cat scan then a MRI and they showed nothing! He finally had a Spec Brain Scan (3d imaging) of the brain which showed CBD(corticobasal degeneration) I guess one of his first symptoms was a change in eyesight, that was back in 2015, he has so many other symptoms now!

Not knowing is hard, just be persistant with docs it took 2years for us to get a proper diagnosis.

We are in Australia

Take care and be Brave!