Years of PSP

[Althea-c]

To all carers,

Please let me know how long you have been caring for your loved one.

It will help me prepare for the future.

Althea-c

[easterncedar]

My sweetheart was developing a limp in 2007, diagnosed in 2011, worked until 2013 and drove until 2014, needed 24-hour care end of 2016 and died May 2017.

[Althea-c in reply to easterncedar]

I Hate PSP for taking our loved ones.

Wishing you strength 🙏💛

[aliciamq in reply to easterncedar]

our first neurologist visit was in 2011, as well, preceded by a left foot dragging problem - It had a name, actually. It ended up being Parkinson's. 2014 sent to mobility neuro - PSP - 2015 He shared some driving(not great) with me to two Florida weddings.- 2016 started Prostate Cancer treatment - nice god :\ - Today Jack depends on a walker and me to get around ~ 99% of his attempts at independent walking (when I am not looking) end with a fall. He also cannot manage the walker on his own. I no longer leave him home alone. July 2017 Hope that helps - It sure helped me get a timeline together...and I'm glad I went through events.

[Althea-c in reply to aliciamq]

That you for the timeline. Everything helps to put this puzzle together. 💛🙏

[Dadshelper]

Dad moved in with me late summer of 2014 needing assistance. He was diagnosed with CBD Jan 2016. By the late fall of 2016 he was basically 100% dependent on care 24/7. Looking back he probably was showing symptoms 2.5-3 years prior to moving in.

Ron

[Althea-c in reply to Dadshelper]

Thank you Ron. All this helps me to know where we are with this condition. 🙏💛

[enjoysalud]

My son, (can read my posting PARKINSONS TO PSP) first symptoms were double vision and slurred speech March of 2014.

He was DX with PD January 2015.

He was re-DX with PSP January/Feb 4, 2017....given 3-5 years to live. He died May 4, 2017 in his home.

He got his first bout of aspiration pneumonia Nov, 2016. He bounced back. His 2nd bout of pneumonia March 2017....in hospital for 7 days solely on an IV, and a PEG was installed. It was downhill after that. He hated the hospital. He came home, under Hospice, and died 5 weeks later, just having turned 55 years old.

He had 24 hour caretaker Feb, 2017, but real need came after 2nd bout of pneumonia.

We live in Los Angeles, California.

[enjoysalud in reply to enjoysalud]

ADDendum: My son worked until June of 2016.

[Althea-c in reply to enjoysalud]

My heart broke while reading your note. Seems PSP is no respecter of age. 🙏💛

[Satt2015]

I gave up my full time job about 4 and 1/2 years ago because I could see something was very wrong with my Dad. Dad was diagnosed about 2 and 1/2 years ago and sadly is now in a nursing home, 😥 X

[Althea-c in reply to Satt2015]

My heart goes out to you. What a precious daughter to sacrifice so much for your dad.💛

[Christine47]

I think that we generally know what is going to happen, just not when. My favorite PSP expression is, "What fresh hell is this?" We go through phases. One or two steps down the rabbit hole, one step up, so his progression on balance seems slow. His symptoms that got him to the doctor was in 2012. That was the (explained) falls, slurring speech and illegible penmanship. His biggest and only setback was at the end of 2015 when he fell and had burr hole surgery. He had already stopped driving in 2014 without incidence. because of his eyesight. My husband still works. He is not stiff. He walks with assistance, takes care of himself except I help him with bathing. He eats regular food and feeds himself. Sometimes he is drooling a bit, especially at night. For a while I was thickening his liquids, but he does not need that anymore. His cognition is slower, but OK, his speech is still slurred, but understandable. He still has good muscle strength, just challenged getting the nerve innervation going. When he concentrates he can speak, balance, eat and swallow without much problem. Multi-tasking is an issue. His biggest problems are double vision and fatigue. My role as caregiver is more of his assistant. I hope this helps you on your path.

[Althea-c in reply to Christine47]

Thank you. My heart broke at " What fresh hell is this " wishing you strength 💛🙏

[enjoysalud in reply to Christine47]

Christina47, it was interesting reading the description of your husband's present condition, especially in comparison to my son's. I wanted to share this for others to read.

I have read articles that equate PSP with ALS, and have shared this perception/theory on this site. Readers will write in and say that's not true.

We do know that the TAU of PSP can be found in Alzheimers as opposed to the ALPHA SYNUCLEIN found in PD. What is it that is found in ALS?

Today I read an article in Scientific American, Jan of 2012, written by Katherine Harmon on Stephan Hawking and having lived with ALS for more than 49 years.....a rarity. I found the article through GOOGLE. BTW, in and around 2009 it was believed that hawking was on death's door.

As the years go by more research brings more information. Apparently there are variants of ALS. According to the article one for ALS is Progressive Supranuclear Palsy!!!!

It made me think that probably most who have PSP have the garden variety kind, but I bet there is a spectrum of variants. I hope your husband has the SLOW MOVING variant that also keeps a "quality" of life versus a "quantity" of life.

[Althea-c in reply to enjoysalud]

Thank you for your informative reply 🙏💛

[Blots]

I think my father’s first symptoms were unsteadiness, around 2009/10. Through 2010 he had a lack of energy. He was always tired, couldn’t walk far, and the unsteadiness continued.

In 2012 he was diagnosed as having Parkinson’s.

In 2013 He stopped driving, and my parents moved their bedroom downstairs.

In 2015 the diagnosis was changed to PSP. By that time he was using a wheelchair all the time, even in the house, but with a little support from my mother he could get from chair to bed or into the car.

By the end of 2016 they had helpers coming round morning and evening, and he couldn’t get in the car at all. His speech was getting harder to understand.

Now (summer 2017), he’s in hospital after having pneumonia, and likely to need to go to a nursing home when he’s discharged.

[Althea-c in reply to Blots]

Thank you. Knowing the timeline of other PSP sufferers might help.

You are in my prayers 🙏💛

[Lisa_jeff]

My husband is 48 and was diagnosed with Parkinson's 6 years ago but when he deteriorated rapidly was last year diagnosed with PSP. He is dependant on me and the carers for everything now. So sad.. it had put such a strain on my family and is heartbreaking to see him suffer like this. He worked for 2 years and stopped driving 2 years ago. I try and take him out for coffees and drives as he loves that. He was such a sociable person full of life. He freezes all the time and needs help moving but I'm so grateful that he can still walk.

We just take everyday it's all you can do.

[Althea-c in reply to Lisa_jeff]

Thank you for your reply. Wishing you strength 💛🙏

[aliciamq]

I have so wanted to ask that question, Althea-c. We have big decisions to make about how we will manage care in our homes. Thanks and the best to you and all of us. I have more to add later- gonna tuck everybody in for the night right now

[Althea-c in reply to aliciamq]

Thank you. Speak later 💛🙏

[Julieandrog]

Hi

I think the answer is we will never be able to predict anything in thisjourney, depends on age etc.

What I have found though is that with us the severe deterioration appears to happen quicker.

Three years ago we were touring aus and NZ , Rog gave a speech at his daughter wedding and we danced all night!

He now has no speech, cannot swallow and we have to use a hoist, but I always like to leave on a positive and that is although this appears to be horrific bizarrely he is easier to care for. I was speaking to a girl who lost her partner and she says the decline of the sufferer and the prolonged sleeping almost gets you prepared for them going.

Not sure if this helps,

Have the best day you can

Julie

[Althea-c in reply to Julieandrog]

Thanks for your reply Julie. 🙏💛

[VronB]

My husband became ill in 2008. It started with loss of memory, falls and complete personality change. It took until 2014 for diagnosis. He can only walk short distances with a walker or stick and hand holding. He coughs and choked a great deal but refuses puréed food or thickener. His speech is very bad and he has trouble using his hands. His sense of perspective has gone, his left eye periodically loses sight and droops. He is totally apathetic and has no empathy but he is still my darling husband and I love him. Xx

[Lacey23 in reply to VronB]

I absolutely know how you feel. He's childlike So some days I can feel like this isn't so unbearable Other days I'm screaming from my heart.

Love, joan

[Althea-c in reply to VronB]

Heartbreaking ... I understand 💛🙏

[Althea-c in reply to VronB]

I think the lack of empathy is not intentional ... he is wound up in his illness.🙏💛 just a thought.

My Barry is the same

[Althea-c]

Thank you for reply. So similar 💛🙏

[homesupport223]

My wife was diagnosed with PSP about 5 years or so before she passed away. We believe she had PSP much earlier than the diagnosis. At that stage she could get by needed care but not as demanding. In the 2.5 years before her passing she needed 24/7 care. My wife passed away the early hours of 23 January 2017. Now she is out of pain Resting in Peace there is a massive void in my life. Still struggling to come to terms with her death. Thanks for the care and understanding of this group of 'friends' . What I did learn at an early stage was there is no set pattern.

[Althea-c in reply to homesupport223]

My condolences and prayers are with you. As you say she is at peace. Thanks for assisting me and may your heart be eased in time. 🙏💛

[77777]

My mum died after 7 yrs but probably had symptoms for some time before. My dad cared for her but when it became too much he had carers coming in morning and evenings. She lost the ability to communicate about 5 weeks before she died. She couldnt move her eyes or make any sounds.Very upsetting. The big downturn happened after she had a peg fitted.Im really sorry to tell you this but yes, you need to be prepared. We didnt find the medical profession very helpful in terms of what to expect, but because it is rare and all cases are different I suppose its difficult to pedict.

[Althea-c in reply to 77777]

Thank you for reply. 🙏💛

[Dicampbell]

It has been five years since my husband was Dx With PSP. He has been in a nursing home for a year now. He uses a wheelchair, is completely incontinent, gets agitated and has horrible delusions. He has just recently started to choke. I am trying to get him enrolled in a medical marijuana plan but that looks like a lot of red tape. At this point I just want his heart breaking delusions (always of me with a marine) to stop and let him have peace and harmony. I have accepted that the love of my life is losing this battle and have decided to cherish all of our great memories. In fact he enjoys looking through old photo albums and just reminiscing.

[Althea-c in reply to Dicampbell]

Dear Dicampb,

We must stay in contact VERY similar

Except my Barry is at home with me and I have a nurse.He is also not in a wheelchair but can hardly walk.

Barry is having vivid dreams of my divorcing him and having an affair with one of his dear friends. This friend visits him often and when he was last here Barry tried to punch him. Fists up and telling him to leave.

This is heartbreaking for me as BARRY is my first and only love and in August we will be married for 50 years. Althea 🙏💛