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PSP Association
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Hello my name is Ken Kurose. I am 39 years old taking care of my dad with psp 74 years old.

Where did PSP come from? How did it start? I'm on very frustrating and journey with my dad. I know I'm not alone and many of you are in the same boat as me. But what is the cause of this disease? I read online that a fruit called soursop has chemicals in it that cause psp. Is this true? My dad drank the juice before.

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Your dad drank that juice? was he from Guadalupe ? I would definitely talk to your neurologist about that. Though I don't know that anything more than genetic factors will help your dad.....how he got it will not help him but it might help his offspring to find and stay away from such genetic triggers! Does your dad exhibit a lack of downward gaze? I read that the people from Guadalupe who have this atypical parkinsons disease show a few similarities with PSP. However they are able to look downward Whereas typical PSP patients have no downward gaze.

So agian I ask, does your dad lack a downward gaze, if he does, it may not be from the soursop he drank. and again i say ask the neuro dr.

A VERY good site to read is CurePSP.org It will give you all sorts of info that not only can you read but they will send a packet that you can share with family, friends and especially you medical team.....many of whom will have never heard of such a disorder.

Please continue to read info and discussions , rants and raves on this site. I hate to have to welcome you here but you have found a good place .

AVB

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No downward gaze. They sell the juice all over the usa in cans. My dad can still walk. He uses a walker. I really don't want to know this but How long Will it be before he is in a wheelchair? Do people find themselves getting frustrated with there parents or loved ones that have this disease. Any suggestion on how to make them change there eating habbits or how to make them not forget there walker before it's too late? I can't explain how I feel knowing my dad has this disease and I b.s. myself that he does not have it. Doimy this is not helping. I'm ok but I'm wrecked on the inside watching this disese eat away at my dad.

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#1 Do not live in denial PSP if that is his diagnosis, is here to stay. Get to know CurePSP.org

#2 know that this is not your dads fault. He did not choose this, no matter how much or what kind of foodstuff he put in his body.

# 3 Know that it is not YOUR fault. You may get mad and frustrated and lash out. It's normal. Whats not normal is staying frustrated. Once you come to terms with this horrid disorder, you will begin to make a new normal for and with your dad and family. This new normal will get you through the rough times and let you hold on to the happy times

#4Find a good medical team that will help your dad. He will not get better but maybe somehow you can help him slow the progression. Physical Therapy Occupational Therapy Speech therapy can give you exercises to do with your dad

#5Taking one day at a time and knowing that #1-5 will be re experienced daily. You may never come to a place where you will NOT be frustrated again.....Every success seems fleeting. But within your new normal, you will know that it is good!

#6 If your dad is able to talk, then discuss things like end of life desires...Maybe fill out a living will so you know what he wants the health care team to do at the end of his life.

Does he want things like a PEG or feeding tube; does he want to be resuscitated at the end....gruesome horrible things to have to think about but at one time or another these things will have to be considered.

#7 This kind of goes along with #6 in that your dad is doing what he has always wanted to do....Take a trip to Europe, wherever maybe just go camping...take lessons....for me I think I 'd like to take percussion lessons and sign language.....It is one thing I regret. B and I did not do something and now he cannot hardly do anything.

#8 Foremost , Rest; Get some good sleep; ask for and accept help. People want to help, let them

#9 Finally If you are a praying person then give this up to a higher power. This will help you spiritually knowing you're not all by yourself , God is really there ! Ask for comfort and you will receive it.

AVB ps sorry it's so long..... and to think I have more ...yikes!

Let me leave you with these versus...Goodnight

For God has not given us the spirit of fear; but of power, and of love, an of sound mind. IITimothy1:7

(For ) I can do all thing through Christ who strengthens me.

Philippians 4:13

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Very well said

hugs kryste

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What causes it is a tricky one really, it's a combination of environmental and genetic factors. My mum is has psp and is an identical twin who has led a very similar life in terms of lifestyle and employment as her twin sister and yet mum has it and her sister does not.....strange

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MissW if your mum is an identical twin, it would be invaluable to some PSP research, if in UK contact PSPA if in US contact CurePSP they should be able to point you towards some researchers, that is if your mum and sister are willing to be Guinea pigs.

I agree PSP is a lottery depends on how and where the body makes and deposits the tau proteins. Let's hope someone can find the dice and turn off PSP.

Best wishes Tim

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She and her sister have tried and tried and volunteered to be guinea pigs but to no avail. Whilst researchers are interested none it seems interested enough to look into things further. It's a shame though as I doubt there are many other identical twins out there like this and so they're missing out on a great research opportunity

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Oh too bad. Please keep trying . Go to CurePSP.org. You will talk to real people who have a focus on this disorder and may be more interested than most people.

Good Luck , please keep trying. Here are all their numbers:

US Phone 1-800-477-4777.

email address: info@curepsp.org

FAX # 410-785-7009

30E Padonia Road, Suite 201Timonium, MD (Maryland), 21093

Please use one of these forms of communication to let them know who you are and that you have VALUABLE information.

Thank you and good luck

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We're UK based

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I understand. But technology makes that ocean between us alot smaller! I don't think geography should limit us.....I don't want to get pushy, I am just excited at this new idea......don't give up.....

AVB

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I'll ask dad and see what he's done and report back :-)

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Do have your dad use the info I gave you and the edited ph. number. I know that he will reach an interested party.

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Ok MissW, Please don't be mad, But I called CurePSP.org who said they WOULD BE VERY INTERESTED in your mum and auntie. Please give them a call . Of all the people who would study your family, they would be the most respectful. If your people have something that could be of use, they will find it .....Please don't let me scare you away. If your family does not want to participate, that is your own prerogative. But if they want to....then please use the information I have given you.

Humbly Yours,

AVB

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Hey no problem, do you have a specific contact person or email or can you get one? If I give that to my dad he'd email them for sure

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And don't be sorry :-)

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Hi,

When I called them (using the correct telephone number), I had to leave a message. They called me back about an hour later. I have since called them back to see if we can get a specific name or number that we can connect you with....

Thank you for your response,

AVB

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Good news/not so good news

Good news is that curepsp.org called me back . Not so good news is she wasn't sure if there were any trials specific to your Mum and aunts situation. We then discussed just collecting data that might be used at a later date.....She did tell me to tell you to call her and that she would be talking to others about your case. The lady you should contact is :

Aryelle Barrett

1-800-475-4777 ext. 5678

Local number is is 443-578-5678

Email:

barrett@pepclinicaltrials.com

good luck I do hope this leads to some valuable conversation

AVB

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I can call the research nurse in Birmingham, Alabama if you would be willing to travel. I can at least ask her what she thinks about PSP and identical twins. The patients have to be able to walk 5 steps to be in the study.

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EDIT

CurePSP.org

Phone Number

1800-457-4777

Please do not call former number.

Please forgive me I'm old have dyslexia and don't do good with numbers....Please don't let my own ineptness represent CurePSP.org abilities to help us cure this disorder.

AVB

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I just said the same thing Tim, this has got to be some excellent information just waiting for someone to discover.

Just recently an astronaut (who has an identical twin) just returned form a year up in space. The medical scientists were all over this experiment collecting the same data from both men to see what the effects of living in outer space does to such things as dna all the way to I believe psychological effects. A myriad of tests were used on both men; I am sure that these women have as much information in them as do the astronauts ! I am too excited!!!!!

AVB

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This would be most interesting to those who do medical studies, i'm sure! Please avail this information to CurePSP.org! They have a genetics program which may want to study the differences and similarities of you mum's and aunts DNA.......This I would think is fantastic news. They also have what they call PEP or Patient Engagement Program which involves patients in new and or ongoing studies to figure out this horrid disorder. Please get a hold of them, they may say thanks anyway but who knows, you all may be the ones they are looking for!

Excitedly Yours,

AVB

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Ok, will ask my dad if he has already done this, he's been pretty proactive on the studies and research front but I'll ask him again. It's seriously a missed opportunity if they don't do some studies though

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He's calling them today

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Ken my Aunt Bev has been living with PSP for years the only time she feels normal and good is when I take her to a warm water pool. I push her in the wheelchair in the water and you would be so amazed she can walk , move her arms, do exercises and talk full sentances. and most of all I stick a noodle the floaty kind under her neck and legs and she can relax and feel good she has the biggest smile on her face it makes her feel like she is in heaven says she would stay in there all the time if she could.

Getting frustrated will do neither of you any good only make things tough, make the best of things your dad is having a hard enough time dealing with PSP, jjust make the best of it and do the best you can I know how you feel no ones coming to help its just the two of us and we laugh as much as we can. Its hard I know if you need to talk you can always email me I got all kinds of good ideas to help make things easier no one tought me anything just figured it as I go what works best for us.

krystetorres@yahoo.com

hugs kryste

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