Tom’s Disease !!: I have been diagnosed in... - PSP Association

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Tom’s Disease !!

bigtom49 profile image
12 Replies

I have been diagnosed in 2011. My doc did an initial diagnosis of Parkinson’s . I have been increasing by dosage of Synamet since then .

I invested in 2016 (about a year later or less) in a research company in La Jolla, California

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bigtom49
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bigtom49 profile image
bigtom49

The company was ICBI

bigtom49 profile image
bigtom49

May help Parkinson’s , PSP, Dementia and or Any brain diseases that require the med to go past the blood brain barrier. Lease check

Their web - ICBI

Kevin_1 profile image
Kevin_1

Hi bigtom49

Welcome to the site.

I'm sorry you have an initial diagnosis of Parkinsons.

Toms disease? = Terrified Of Missing Stuff and it's highly contagious? Normally an executive joke.

So, sorry, I'm a little confused.

Can you tell us more?

This is a warm friendly place and you are welcome.

Best

Kevin

:)

bigtom49 profile image
bigtom49 in reply toKevin_1

I was cutoff but the company I invested with (ICBI ) are within

1 year (they say) to finding a Pharma to market their product! They are a research company which has cured (They say) Parkinson’s mice.

bigtom49 profile image
bigtom49 in reply toKevin_1

Sorry - my specialist at the Calgary Foothills Hospital Movement Clinic would like to say that - after more testing - always the way - that their initial diagnosis may change from Parkinson’s to PSP. Over the last 6 months, my condition has worsened to anything but a Parkinson’s disease. I currently have stopped driving and today for the first time, have been escorted to the cafeteria, by at least one person (tied to Home Care). The Foothills hospital specialist deemed my illness as possible Parkinsons but in a report has stated that PSP could conceivably be the case. We all know how quickly a Parkinson’s diagnosis can change to PSP. Hope this helps.

Kevin_1 profile image
Kevin_1 in reply tobigtom49

Hi bigtom49

Thanks for explaining. I understand now.

I'm so sorry you are facing such a diagnosis.

Yes, there is a huge amount of research going on with reports of drugs just entering the trial stage. There is hope that one day there may be something which helps.

I hope you have a good support network around you.

Anyway, for now, again - Welcome

Warmly

Kevin

bigtom49 profile image
bigtom49

My investment in ICBI was in around the fall of 2012. Sorry - not 2016. Tom

PDDJED profile image
PDDJED

Looked up ICBII and it looks like they are doing excellent research into Parkinson's - thanks for passing the information on and good luck with PSP. Great that you are on this website sharing your experience.

My husband was also diagnosed in 2011 with Parkinson's, and started with about 3 levadopa per day. It was increased over the years, along with timing getting to every 2 hours, along with the slow release, but the tremors continued nothing seemed to alleviate them. We (my husband and myself) decided enough was enough, and started a slow withdrawal (need to take it very slow) after 3 months he is down to 7 levadopa per day. The tremors have not changed much, and our prescription funds of dropped greatly. The doctor was pleased with the results that we had taken on our own. This may not work for everyone, but we much take charge of our own destiny in life.

Just be careful on the dosage that doctors are giving you, know your body, and if you have a car e giver (a spouse) let them be totally involved, they live with you and see you on a daily bases, seeing the effects, whether good or bad results.

Judi for Dave

bigtom49 profile image
bigtom49 in reply to

I take 3 levo (100/25) plus one Entacapone 5 times daily . I have been falling lately because whenever I step back, I lose balance.

aliciamq profile image
aliciamq

My husband has successfully taken amantadine with the c/levadopa - I understand it addresses the possible side effects of the c/ levadopa.

bigtom49 profile image
bigtom49

Side effects - as in? What is c/levadopa?

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