psp origins

[blux]

i am curious of the relationship between this disease and the environment. i have psp and trying deal with the emotional roller coaster.

[SharonAB]

Dear Blux,

You ask about PSP origins. Unfortunately, my understanding is there is no answer, yet. However there are numerous devoted people from many countries currently in search, researching and undergoing studies to find a link to our environment and/or genetics. So my suggestion to you is my all means 'wonder' about what it could be, but do not allow it become the centre of your attention, like I did for a time trying to find an answer and therefore a possible cure for my husband. Rather, enjoy life for what it is - Those with the expertise and resources have a keen interest in finding an answer to your question and will announce it to the world when found.

Yes, it easier said than done! - But remember for ALL OF US - none can predict the future and none can tell what our lives tomorrow will be.

Regards,

Alana - Western Australia

[dorothy-thompson]

Dear Blux

You are right, it is an emotional roller coaster, but I also agree with Alana.

After nearly 8 years of caring for my husband, looking for things to relieve him in some way, taking him to doctors, neurologists, acupuncturists, herbalist, balance clinics etc etc, I now feel that the only thing we can do is manage each day as it comes.

But, I don't have PSP so who am I to say what is right for you. You must be the judge of that.

Take care, kind regards and stay on the site.

Dorothy T

[blux in reply to dorothy-thompson]

Thanks for your response it. Indeed is a day to day ..I have never been a real emotional person.until now..I know this is going to sound bad but II hope I don't live that Iong.

[mattgo in reply to blux]

BLUX!

Mental health is the key. The power of the mind over body people still do not understand. Hang in there, be positive!! They may have a break through tomorrow.

I want you to check out this website at earth clinic. I refuse to believe there is no cure out there.

I am an advocate of my father who has PSP. I have been reading everything that I have found in relation to PSP. He has done a couple of clinical trials. One with CoQ10 and one with TPI-287. Neither seemed to have much effect, but as you know its hard to know because he has good days and bad ones. They currently have him on Azilect and Amantadine and CoQ10. He is hanging in there. We are thinking about weaning him off those and trying lysine. ted.earthclinic.com/cures/p...

Also I have also seen some positive reviews on Tumeric and Prevagen.

Any thoughts? Nice to meet you. I am a firm believer the answer is out there somewhere and I am not going to quit.

[nanny27]

Please have faith. I am in my 8th. year of PSP.Still functional. God bless

[MOMBCD1 in reply to nanny27]

I am in my 4th year of psp so far I cannot walk or talk right or see as good as I used to or see without my eyes jumping but I still have 3 children and a husband who need me around. so, I have a lot. but can you tell me what else I can lose

[ultramodern]

Dear Blux please transfer to a similar question posed to-day and replies given to LindaEllis on same subject.

we are attacked daily by bad environment...and stuff we breath that we don't even know about, thank heavens...

so could be.

Keep hanging in there ,with you in mind, stay calm and carry on posting...we're listening to you,Blux,

best,brian

[blux]

Thanks all I was a little negative yesterday

I feel better.just again frustrated

.would be interested in anyone is trying different

Therapies that r helping ..also thoughts about med mj

[shasha in reply to blux]

BLUX WHAT MEDS ARE YOU ON

[blux in reply to shasha]

The norm carbidpopa/levodopa

Alzlect

[blux in reply to shasha]

The norm carbidpopa/levodopa

Alzlect

[shasha in reply to blux]

blux do you have PSP or PD ? because these are the drugs that are supposed not to work on PSP

[Hidden]

PSP, I have one of the best doctors in the U S and this what he has put me on..more confused that ever.blux

[Hidden]

Posted on my wife's account sorry about that..blux

[deew]

Hello blux

Is your Dr a movement disorder specials (neurologist).My husband went trough 2 years of meds like carbidpopa/levodopa and knowing what I know now I could just strangle all of them (DR).They kick the heck of of him and we just wasted that TIME and money to only find out that he has PSP. The money I do not care about but you can not give back the time. When you have PSP you have to grab every second as we are learning in heck of hurry.

Take care of your self .

Dee in BC

[blux]

Then What kind of meds do PSP patients take

[deew]

My husband takes nothing for PSP,We were told he had PSP and and that there was nothing more to offer him.Others will chime in on this topic I'm sure.

Take care

Dee in BC

[manitoba in reply to deew]

Dee that was exactly what I was told when my wife was diagnosed 2 years ago. She is now 63 and using a walker to get around although she still falls on average 15 times a month. Her speech is stll quite good and her swallowing not bad although she is starting to cough a lot more.

[blux]

To answer your question my doc is a movement disorder specialist. I will call his nurse tomorrow to ask about the meds he is giving me. Thanks for your advise. How old is your husband? I am 52 and was diagnosed with PD in June 2011 and then in January 2013 the doc said he believes I have PSP. My wife thinks I have both PSP and CBD.

[deew]

My husband is 61 and it was about 3 years of Dr and different meds before we were told to go home and get our affairs in order and( if he was still alive in 10 years then we know it was not PSP ).That I was told over the phone.We are from a very small town and the neurologist was 8 hours away,so the internet became my new best friend.And this site is now my new best friend.

Take care

Dee in BC

[Hidden]

The Causes of PSP

Its made by the CurePSP Foundiation.

youtu.be/mmbNBpQuuWY(Not working as expected?)