Story about Progressive Supranuclear Palsy .

My journey with my husband who had Progressive Supranuclear Palsy

Dec 2, 2


.This was my journey off PSP with my Husband it may be able to help some of you are new to this to let you know what PSP is all about..... I was my husbands carer,he was diagnosed with PSP in 2009 after 2 years of trying to find out what was wrong with him,he had so many misdiagnosis,in 2008 he fell from a ladder and broke his spine in 2 places he was in plaster from his neck to his waist for 6 months he also had to have his wrist pinned back together as he broke that badly to in the same fall, he did make a recovery from his broken spine but it wasn't long before he started falling again at first his falls were forward which led to many stays in hospital,he took the top of his scalp of trying to get up after a fall he was dragging the top his head along the floor but he could not get up he had to stay there till my grandson found him covered in blood.Rod had always been a good driver but it got to the stage where i was terrified of getting in the car with him....Rod started to wet him self without knowing he had done it,his hand writing became unreadable,then came the backward falls again once on the floor he could not get up,he then developed a gaze and strange look on his face and he began slurring some people would think he was drunk,he also began to lose control of his bowel movements,then about 2 months after all these symptoms had appeared he was finally diagnosed with PSP just by a simple eye test,once Rod was diagnosed he progressed rapidly,he could no longer walk so in a wheel chair he went...Rod had lots of friends he was liked by all who knew him,he was so full of fun always fooling around life and soul of the party,but when Rod took poorly with PSP sadly his friends stopped coming,but strangely when Rod passed away they all turned up at his funeral,there were over hundred people there but sadly Rod couldn't see them ,so sad they had to wait till he passed away.......Rod could no longer feed his self and his voice became very weak.A hospital bed was bought into the front room of our home as Rod was no longer able to go up the stairs even on the stair lift.We had two carers come in every morning to help me get him bathed, i dressed him every day in different clothes bright coloured t shirts and fashionable jogging bottoms for comfort,he always liked to be dressed nice,he had a reclinning chair in the dinning room where he would stay with me in the day,i would feed him and take care of all his needs till it was time for the carers to come and put Rod to bed for the night,i never let Rod become bed bound,i didn't want him getting bedsores,i would take him out in his wheel chair as much as i could.Rod had pneumonia 3 times through food and fluids entering his lungs even though his fluids were thickened he said from the start that he did not want a feeding tube when he could no longer swallow. Rod again got pneumonia the doctor came in,he took me into another room and he said we could send Rod in hospital to be treated for the pneumonia but with his lungs being in such a bad way he would most likely get it again within a couple of weeks or we could leave him at home withdraw fluids and food and he would go on a morphine drip and drug that would dry up the pneumonia it would not cure it just dry it up and my darling husband would pass away within a few days,i spoke with my family and i knew it would be what Rod wanted ,he didn't want to live like this locked in his in his own body not able to communicate with any one it was so so cruel so we decided to let him go, Rod passed away 7 days later i never left him alone,my heart is broken i miss him so so very much,he was a wonderful husband and a wonderful father and grandad,he was always so full of fun he loved life and every body loved him,I wont say it wasn't hard work,because it was, lifting Rod out of his chair into to his wheel and in out the car,feeding him,changing him having to do every thing in home and it took it's toll on my body,but if i had to do it all again i would.i love and miss my Rod so so very much he was my life. I HATE PSP this is just an out line of what living with PSP was like. xx

Know someone who should read this story? Share it

4 comments
0

Thank you for sharing your's and Rod's story, Ann x

Commented 8 years ago Julia 20
0

Ann,

I regularly work with clients and carers of those with PSP. After learning of PSP, I've created community programs to benefit those with this condition. Your husband was truly fortunate to have someone like you in his life. It sounds like you gave him the highest quality of life available. I too at times suffer from a poorly understood condition and would love to have an understanding ear.  I am very sorry to hear you lost the love of your life and hope you never question the care you were able to give him.  Thank you for sharing your story.

Commented 7 years ago Matt 10
0

Ann, My husband has PSP for about 18 months & he is still ambulatory but falls & his eyesight is getting really bad.  Your story was beautiful & I hope I can be strong enough to lift my hubby into a wheelchair because I too want to care for him at home.  He can eat but he coughs & I now things are starting with his swallowing.  He sleeps 15 to 18 hrs a day but not depressed.  As  I read your story I realize how lucky we were to have gotten a diagnosis quickly. So I was able to try & catch him when he fell or break his falls. He was never seriouly injured just bumps & bruises. e takes Sinemet  which really helps his gait in curbs the falls.  Your story was remarkable.  This is such a terrible illness & rare.

I hate wathing the love of my life deteriate daily in front of my eyes.  Thanks for inspiration & sorry for your loss

Commented 6 years ago Karyn 10
0

My dad was diagnosed with Parkinson's disease his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,am highly recommended this www.ultimatelifeclinic.com to anyone who needs help.

Commented 2 years ago matina 2610

Login or register to leave a comment


Do I have Progressive Supranuclear Palsy?

How do I know if I have Progressive Supranuclear Palsy?

Progressive Supranuclear Palsy cure

Does Progressive Supranuclear Palsy have a cure?

Progressive Supranuclear Palsy symptoms

Which are the symptoms of Progressive Supranuclear Palsy?

Progressive Supranuclear Palsy and depression

Progressive Supranuclear Palsy and depression

Progressive Supranuclear Palsy life expectancy

What is the life expectancy of someone with Progressive Supranuclear P...

What is Progressive Supranuclear Palsy

What is Progressive Supranuclear Palsy

Progressive Supranuclear Palsy treatments

What are the best treatments for Progressive Supranuclear Palsy?

ICD9 and ICD10 codes of Progressive Supranuclear Palsy

ICD10 code of Progressive Supranuclear Palsy and ICD9 code