PSP Association

First timer

Hello to all you wonderful and caring people! This is my first time posting although I have been following you since September 2017 ( kinda like a stalker lol) Although I don't personally know any of you, and up until this moment you didn't know I even existed, I can't tell you what a positive impact you have had on me!!!! I truly felt so alone until I found this site! My beautiful mother is the one suffering from psp, and as you all know this dreaded disease has turned our world upside down!! I Truely thank each and every one of you for all your kindness!!

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Welcome you are right this is the best site ever, everyone is so supportive and caring, someone is always there to pick you up and make you feel better. Sorry to hear about your mum, bloody evil illness. My husband was diagnosed in 2015, been a very tough journey. Sending you a big hug. Yvonne xxxx

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Thank you Yvonne, and I am also sorry to hear about your husband !! If you don't mind me asking, how is your husband ? Courious . I'm almost overwhelmed, because I've never spoke to anyone about this journey, that actually is experiencing it also. Thanks Allison

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Alison it has been very hard, he is coughing and choking all the time, he is permanently in a wheelchair, he does not talk much, it is so hard to understand him some days, some days he doesn’t want to talk, can only take one day at a time, just feel that it has robbed us of our lives, yes George is the one with psp but it affects me as well, and I am sure you feel robbed of the person you are caring for, there lives have been taken away from the with this dreadful illness xxxxx

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Oh I hate that so much for both of you!! And yes.. I feel the very same way! Our lives as we once known, is gone! Nothing about this is fair... I've always heard life isn't fair but I didn't know this is what it meant!! Do you have help? We're not quite as far down this horrible path, but not very far behind. Kinda ironic, for years, I have been known for to say.. Take a deep breath! That was how I tried to fix everyone's problems!! Now I'm telling myself that everyday ! It hasn't fixed anything!! But it may help a little! Thank for sharing your story with me, I will be keeping you and George in my thoughts and prayers!

Take care, Allison

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Hello Reidallison and Welcome!

I relate to your words very much as I was in the same position this past fall: I was falling through space in the dark, raging and fearful - and I found this site: It was like a safety net suddenly caught me and this net had all these sparkling points of light - that were the members! Just reading was wonderful - it saved my sanity.

And now that you are out and sharing, it will feel even better! As you probably saw a week or so ago, we even have an online party now and then :-)

I look forward to hearing more about your experience. Tell us where you live too.

Anne G.

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Welcome, identify with you so much, im more of a reader than a poster, but still feel included and know people will pick me up when I need it most. Best site ever.

Love and hugs

Helenxxxx

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Thank you Helen, and I totally agree! I already feel better! I must add what a precious picture!!! I'm a big dog lover!! I have a Pomeranian, that a wouldn't take a million $ for ! Lol. Love Allison

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Welcome! This site is a live saver for both you and your loved one. You will cope so much better, for the support everyone gets. Now you have finally posted, you will find even more help. Ask any question, rant and rave as much as you need. We all understand. There won't be one negitative thought that someone else hasn't already thought! No judging on here. You have suddenly inherited a whole new family. We have your back, you are not alone anymore. We all need each other, so look forward to hearing more from you.

Sending big hug and much love

Lots of love

Anne

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Thank you so much for such kind words!! As I read through all the sweet people that have replied, I just feel like a weight has been lifted just knowing I now have someone that understands !!!

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Wow!! I can't even explain how this makes me feel, please bare with me, I am not the best with words! Wow.. that's all I can say... the ones that replied and welcomed me....I already love you all!! lol I should have spoke up months ago, I have never had anyone to talk to about my moms condition, because nobody really understands. They act like they do, and they say they do, but they don't have a clue! I will try to tell you our story , and hopefully it won't be too long ( but I'm not promising anything ) lol. My mom is the most incredible woman I have ever known!! We are from a small town in Mo. U.S.A. born an raised!! I had the best childhood anyone could ever ask for, with two of the best parents ever!!! I have one sister, that also lives near us. My dear mom is 72 and has always been so beautiful, healthy and happy. She worked as a secretary for most of her life, taught Sunday school ( never drank or smoked )and dotted on all of her friends, family, grandchildren! My parents had a wonderful marriage and life together, enjoyed life and each other so much, married 45 years. In 2009 my dad was killed in an accident and this is when our world fell apart!! My mom was never the same after that day!! She had up until that day never had any health issues, always on the go and could do anything!!! She stayed on the family farm for a year after my dad passing, but was never happy there again, so she sold the farm and moved to town, nice home, convenient location, seemed perfect for her, but she never seemed happy, then about 2011 her personality seemed to change as well, I assumed it had something to do with still grieving, but thought it was odd, then around 2012 she started having problems opening her mouth, thought it was TMJ and finally was having that treated, then her speech was slurring ( sounded like she was drunk or messed up on pills or something ) Never!! Anyways when I asked her about her speech she was just as concerned as I was, we just assumed it had something to do with TMJ although it was better shortly after that she started stumbling around, kinda like being clumsy, tripping on things ( thought maybe something to do with her bifocals ) then she fell one day in her yard and broke her collar bone, healed over that, then a little finder binder ( or two ) . So now we're up to about 2014, started noticing she was pretty quit didn't talk much didn't call much , I thought maybe it was because of her voice but I think it was more apathy than anything. 2015 some falls here and there but more often so knew something was going on, first took her to a ear dr. Thought maybe inner ear issues, NO that was fine, so went to see a neurologist near by. In the mean time I had been searching the enternet for quite sometime and had came up with psp, but continued searching!! The neurologist checked her out, ordered a cat scan in the meantime I kept researching as well, I told my husband one night.... I think my mom has psp!!! Never heard of such a thing!!! So went back to dr. And he tell us he's pretty sure it's psp!! My mom ask can you fix it? He said NO, so that didn't make her happy. So I put my mom on a plane and flew her to Houston Tx. to a renound neurologist , we were there for 15 days seen him 5 times as he ran test and blood work and then diagnosed my dear mom with Progressive Supranuclear Palsy!! Devistated!!! But at least we didn't get a lot of wrong diagnosis! This was Feb 2017. So here we are... my mom can't walk by herself, she aspirates ( but no infections) thankfully!! Has horrible, horribly time with her eyes!! Severe dry eyes, so light sensitive, hurt her so bad, constant watering, just miserable!! She can still feed herself but very messy, and I can still understand her, her mind is very good, still no other health issues, no medication of any kind!! It's just so sad to see her like this!! I just can't figure out why? How? My mom is still the most Beautiful, Amazing woman I've ever known!!! Xoxo2uAll

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Hi Reidallison, I truly appreciate your sadness for your mom and her worrying about her PSP diesels

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You are amazing. I too have found this site to be life changing.

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Hi reidallison. Welcome to the club - wonderful people but a crappy condition. We often wonder what triggered my wife's psp and first noticed a change in her after I was brought back to life after I had a major heart attack in 2009. Seems like you and others had similar triggers so maybe it's not such a daft idea.

I have only posted a couple of times but have had such helpful answers to my questions. Stay with us - stay positive and always share anything.

Love and hugs Bryan

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Sorry to see another one has joined our group.

Welcome,you will find a wealth of information and first hand knowledge.

Dee in BC

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Welcome to you. A familiar story I'm afraid.

Here you will find we really understand and will support you.

My husband was diagnosed in 2013 but had had symptoms for a few years.

He made quite slow progress for 4 years but then deteriorated and died last October.

Make the best of NOW is my advice.

love from Jean xx

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Thank you Jean for the advice, I'm trying to do just that. I'm so sorry to hear about your husband! I know everything that you have been through was incredibly hard.... but if you can make it through that, you can make it through this next chapter that you have begun! Keeping you in my thoughts and prayers!!

Lots of love , Alli

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Sorry you have had to join us BUT this is the best site ever!!! The experience of the site members will be invaluable to you on this PSP journey. We may be scattered across the world but our pain and challenges are so very similar - yet dissimilar to other diseases

My husband a retired surgeon was diagnosed 4 years ago but had personality changes 10 years ago and after you mention voice changes I now remember he had these prob 8 years ago.

Like you I ‘watched the site for a while before posting. This is a safe place !!!

Take care and welcome

Love Tippy

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Welcome.

Please feel free to rant, rave, ask questions, just let off steam - anything you want. There will always be someone here to help or just listen to your worries. We all share the kind of details we never thought we would, but it helps to know you are not alone in this.

xx

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Welcome - glad to learn about you and your mom. My mom’s path has been very similar except it was her kid brother’s death that seems to have launched what at the time felt like reasonable apathy due to being his caregiver and watching him go through dialysis/renal failure. She went from being the warm, bubbly person she’d always been to withdrawn and secluded within months. It took us awhile to rule out depression, pain from back problems, other vision issues (she had bilateral corneal transplants for yet another dystrophy called fughs), etc. Then she failed an ocular motor exam with PT (physio) - of all places - and on the day after mother’s day 2016 she got her PSP diagnosis. Her decline has been quick - no doubt sped up by a concussion almost a year ago. She now lives with my family and I’m just glad we went to lots of shows, lunches, and gatherings right after diagnosis. And I know my 5 & 9yo boys bring her joy. But, it sure is stressful managing it all and I’m far from perfect.

Who else is in your local network to help? Do you live with your mom? Is your sister engaged? I hope you’ve got strong support on your side. Big hugs.

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I have been wanting to respond to you for days , but.. been busy!! I'm sure you understand. I'm sorry to hear about your mom, sounds like she has really been dealt alot of rotten cards! I have heard a few that have mentioned noticing symptoms after some traumatic situation, it sure make me wonder!!! Also, you have young boys. Wow.. that makes me anxious just thinking about it!! You definitely have your hands full, I'm sure they are very good boys!! I have grandkids, and I was just thinking today when they were here( my mom lives with me) this is not the relationship between my grandchildren and their great- grandmother that I once pictured, but they are still making memories and that's what is important. Back to answering your questions.. I guess I don't know what you mean by my network? But I'm courious. And... No my sister isn't really involved!! She is 3 years older, a nurse, that just retired early at 54 and lives 15 minutes away.... but SHE HAS A LIFE, anyway that's what she told me!! But it's all good, I've always been the favorite !!! Just kidding. I just don't get it!!

Thanks for sharing

XxxxAlli

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Hello our journey on this rollercoaster started 2015 never the same day twice with our loved ones xx

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Hi, glad you found this site but sad that you had to because of your mum's diagnosis. I've found more information about PSP on this site than from our health professionals and when times get tough there is always someone with words of comfort to pick you up. Love to you and your mum xx

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Nice to hear from you. Like your situation, it is my Mum who has PSP. It’s a tough journey and horrifyingly sad at times but it really does help to know you are not alone in bearing witness to this dreadful disease . My Mum first started showing very subtle symptoms about 6 and a half years ago. It took her a long time to accept she had something wrong. I think she was scared to go to GP. In the end she was diagnosed just over three years ago and now is in the last stages of the disease. Unable to do anything at all but is still managing to eat puréed food and drink very thickened fluids. She never wanted a feeding tube. We wait to see what happens next. Th S site is a godsend. Love Steph xx

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Sorry to here about your mom.. sounds very familiar!! My mom also has said.. No to a feeding tube. Does your mom live with you?

xxxxAlli

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Your Mum’s story really reminds me of what happened to mine. Her doctor hadn’t even heard of PSP and she ended up being referred to National Hospital of Neurology , London UK where she was diagnosed. It’s very hard knowing nothing can be done at all except managing symptoms. M Mum is now 75 but was around 69 when she first began to stop joining in conversations and being withdrawn, then stopping speaking in mid sentence then the falls and unsteadiness. It sounds so similar to your Mum. Love Steph xx

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Wow.. another very similar story, thanks for sharing your story! Lots so love and best of wishes to you and your mom

Alli

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Hi Reidallison;

Thanks for sharing your Mom's story. Have you had a chance to get to know the search feature of this site and also the list of "related" posts that show up on the right of the main conversation? Theres a wealth of practical info for just about every symptom of PSP. I think we've got about 6 years worth! Ive found the historic posts invaluable.

Best wishes to you and your mom xx

Anne G.

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Hi Reidallison,

I'm very sorry to hear about your mother. My dear mother suffered from MSA (multiple system atrophy) , a condition similar to PSP, and it broke my heart to see her struggles. Many of the traits you used to describe your mother, I would echo about my own mother, including the questions of how and why?

Last year (2017), my husband was diagnosed with PSP after being told he had Parkinson's the year before. I was shocked to my very core! While I knew something was wrong (as I looked back, things had not been "right" with him for several years prior), I NEVER imagined that my husband would also develop such a rare neurodegerative disorder like my mother. And, again I question why?

You mentioned your mother's severe dry eye discomfort. My husband has experienced this, too. We have found OTC lubricant eye drops to be very helpful. Systane or Refresh Advanced have worked best for him. You can readily find these at Walmart, CVS, Walgreens, or whatever discount or drugstore chains available in your area. Shop around for the best price. 😊

We also live in the USA and while there are many specialists who are knowledgeable about PSP and other movement disorders, good answers to prevention and treatment seem to continue to elude them.

I personally believe these conditions are underdiagnosed which is why the numbers of cases are relatively small, as compared to other conditions like Parkinson's. Large numbers are what generates interest in research which then brings more knowledge. Promoting awareness is a first step in reaching that goal.

Take care.

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OMG Teresa!...your mom with MSA AND your husband with PSP?? What in heavens name are the odds of that? Talk about no justice - I don't know how you manage to sound so sane!

Hugs to you!

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It's a little like traveling down a rough, unfamiliar road for the second time......the potholes are still there, but this time you know where they are. I pray to God for guidance and strength and trust that He will see us through.

I have my moments, and then I promptly remind myself that what I might feel is nothing compared to the torment that my precious husband is having to endure.

Hugs to you.

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