We have had a very eventful few weeks. Dad was discharged from hospital into a nursing home partially funded by CHC after a total loss of swallow. He regained enough whilst in hospital to now manage pureed foods and thickened drinks. However, he has had a couple of urine infections in the last month and several falls, even with all the sensors in the home and attentive staff he has fallen from his bed and broken his nose, fallen and cut his face and fallen after getting up during the night to use the bathroom and was found on the bathroom floor (somehow the bed alarm had become disconnected so didn't go off!). The home have tried several options to try to help him changing types of beds, rails on and off, crash mats/ no crash mats, nothing works. He had spinal injections at the pain clinic on Monday but then spent the night and next day in A&E as he couldn't urinate. Luckily they discovered he had yet another infection but unluckily on discharge neglected to send a discharge letter with him authorising the use of the antibiotics they had dispensed for him and so the nursing home were unable to administer them - you honestly could not make it up!! I spent most of the night by his bed in A&E. Yesterday when we visited him he had lost the ability to speak and managed to stand but was routed to the spot and had an 'accident'. He has no facial expression now and his eyes are totally blank. He is even having difficulty squeezing my hand for yes in response to questions. After yesterday's visit I feel that he will not be long before he is bedridden and I am finding it difficult to come to terms with - how does this happen in so short a period of time to someone who has led a healthy lifestyle, no smoking, drinking only a couple of times a year, walking every day after a lifetime of fell walking etc? Mentally too he was a very capable man who worked in engineering and teaching - could repair anything a real Mr. Fix-it but can't now do anything to fix himself, nothing short of tragic. He has also lost a lot of weight he is now only 67KG. Wondering if the increased number of falls and infections means he is rapidly running out of time now? JR61 x
Rapid deterioration: We have had a very... - PSP Association
Rapid deterioration
Such is the nature of this disease. My son died at barely 55 years of age.
He had a BA in music from UCLA, a Law degree from UC Berekely (Boalt Hall) passing the Calif Bar, passing the Calif CPA, a full Secondary credential in math. My son loved life, did not drink, did not do drugs, did not smoke, walked a 3+ mile 5 days a week. He played his music at night and weekends and taught math during the week. He was kind and compassionate to those close and to strangers.
It's difficult. PSP was agressive and relentless. When he died he could NOT walk unattended, He could not speak, he could not see, he could not swallow, he had thrush treated with antibiotics, and yet he still managed to communicate with his thumb.
He died May 4, 2017. I miss him each day to the point of forgetting how much he suffered and wishing he was still here.
I hope that soon there will be help..............I keep thinking it is a genetic disease. My prayers go out several times a day to all of us.
Los Angeles...............USA
I know there is no logic to any of this, it's horrific. I'm just trying to be positive and unselfish, thinking the faster it goes the less time dad has to suffer as it's torture for him. I hope that you are wrong about genetics, as I too have a son, daughter and grandson. I think there may be some predisposition genetically but it possibly requires an environmental trigger. My father had three brothers and two sisters (all but one now long departed) and well over thirty nieces, nephews and innumerable cousins and there has been no-one else with even anything remotely like this awful disease, so fingers crossed he has just drawn the short straw and no one else will experience the horrors of what he is going through. I hope that you find the strength to manage the loss of your son, thinking of you JR61 x
Hi, I too have another child and grandchildren. Genetics does not mean that each generation is susceptible (could skip generations), also could be a mutant or recessive genes.
There is much progress being made in gene therapy. If this is caused by a gene or combo, maybe soon (5-10 years there will be answers and treatment). I hope so.
Keeping you in my prayers.
Thank you, yes hopefully there will be JR61
Is he on antibiotics now? I hope so after the mess up on discharge, sadly not uncommon story these days.
I find the not knowing what is going to happen next and when so hard. Every patient is individual on how long their suffering goes on for at each stage. Hope this latest infection clears up soon for him and he is feeling more comfortable x
Thank you Spiralsparkle, yes he is now on the antibiotics but his PSP is definitely worse now. JR61 x
Hi JR61, my husband has had a room in a nursing home since 31 August last year. However, he is in hospital at this point in time. They were thinking of discharging him but he has uro-sepsis and pneumonia yet again. Led broke his finger and the splint was rubbing against his ring finger causing an infection. It would have been noticed had they washed his hand. This caused sepsis and he also had pneumonia. I am angry at the lack of care at the home. He was given a cough assist to help him to clear his chest and to be used every morning when he woke. That hung on a hook in his room for 5 weeks before his admission to hospital 4 weeks ago. I asked the consultant if the chest assist could have prevented the pneumonia and was told that it would have certainly prevented the severity of this. Unfortunately he is battling another bout and it's heart breaking watching him struggle yet again. He is just skin and bones now. This disease just refuses to be beaten and is so cruel. Les declined rapidly too and as his wife and probably so many others around the world I detest PSP.
I hope something improves for your father.
Love
Pat
Hi Pat, that is just horrific, what is the matter with these people? How can they neglect someone who is so helpless to such an extent, I despair of the members of the ‘caring professions’ sometimes. I hope that Les recovers soon, take care JR61 x
Hi, thanks for your reply. Sadly Les will not recover now. His organs are failing and he has had enough. Although I have promised him I will find a way to cope and never stop loving him he refuses to give up the fight. After 41 years of marriage and a further 3 before we married I honestly can't bear the thought of losing him. Still PSP is too strong an enemy and inevitably takes the person. He is my best friend and totally irreplaceable but I will try to be strong for him and our children and grandchildren. He is so young at 62. Still PSP wins another battle.
Pat
So sorry, Pat. Its really hard to watch your partner go. I know. We were married 55 years.
Big hug from Jean xx
I hope that you both find the inner strength from somewhere to face this together and that his passing is a peaceful one when the time comes. Thinking of you both. JR61 xx
We have been told that PSP is not known to be genetic.
A professor at Cambridge university who is expert in this research started a new trial earlier this year to try to understand more about the disease.
Interestingly, I have noted on many posts the those who have this disease are intelligent and articulate people.
My husband was a Principle Chemical Engineer with a Mensa score of 150, Who travelled the World with his job. A funny, kind man who could also fix anything (apart from cars).!!
Now he is completely dependant on all of his care.
Stay well.
Sending a virtual hug
Hi DOttieLOttie, I hope that it is proved eventually that it isn’t genetic. It is heartbreaking that so many sufferers lose all the knowledge that they have accumulated in this cruel way, it is such a tragic waste. Dad was in engineering and teaching and fixed many a car in his time! He was a kind and generous man who helped so many people. PSP is such an unfair reward for a life well spent. I feel so sad for you and your husband, thinking of you too. JR61 x
Mom is super intelligent as well. Phi Betta Kappa, multiple degrees (4.0 in all classes). Her library is filled with books on philosophy. She also exercised almost everyday of her life : typically walking 3 miles or swimming 1 mile. She ate extremely healthily and did not drink or smoke.
Interesting that so many have been in engineering and similar professions. My husband was a civil engineer.
Vicki
Interesting indeed. My husband is an engineering graduate but worked as a physics/ math teacher. He loves and has composed classical music and was a lay preacher. Re genetics, his sister has also been diagnosed recently with PSP.
PSP and genetics. I have that worry as we have a son (who often asks). Not sure if it's a coincidence, my husband's father was diagnosed with PD. That was decades ago. I recall that he had some symptoms similar to my husband. He died at 68, my husband is 73. My husband's paternal uncle died of ALS. Three degenerative neuro diseases in one family. Makes one wonder.
Sorry to here about your dad my dad has psp too we are all trying to come to terms with this terrible illness . It's been a emotional rollercoaster for me and my sister , he too has never smoked or drank , lived a healthy life style , my dad is now 73 he was diagnosed with Parkinson's in 2013 from April 2019 had constant hospital admissions , to find out this week it's psp , I feel like he's been neglected by the doctors and other health professionals . My dad has deteriorated really fast , he's struggling to swallow hardly eats anything all food is now blended , thinkener for drinks , refused to peg feed but say may consider in near future , he is just coming to terms with this illness himself , he lost lots of weight like your dad too iam trying to appreciate my dad how he is now has I know he's going to decline . I understand what you and you dad are going through , sometimes I feel like we've been robbed of our loving dad , my heart goes out to you .
Very sorry to hear that your father and entire family are going through this terrible journey.
My dad died on 4.12.17. But if you are in the UK like us, the Specialist Neuro Nurse was a great source of assistance as was PSPA and Age UK. She coordinated the multi disciplinary team that tried to provide different aspects of care for my dad.
If you have not already done so please do not shy away from getting legal affairs in order, as your dad will need your assistance and without this you will find that a difficult situation can become even worse. I have written several posts on Dad’s and our experiences, hoping that they might help someone out there who was struggling with this terrible illness.
After dad died we discovered that there were actually three patients in his nursing home with the same diagnosis, so it appears that PSP is not as ‘rare’ as we were at first led to believe. However, it may be that until enough symptoms become apparent it is very difficult to diagnose and that a definitive diagnosis is only possible after death. This is very difficult to accept and process when you are in the maelstrom that is the daily struggle with this terrible disease and I understand and recognise the feelings of neglect that you are experiencing and that I also felt anger and impotence in the face of this illness.
Dad also refused to have a peg and ultimately refused all medical interventions including a drip etc fully understanding the consequences. This was his decision and we as a family supported him to the inevitable end. It has now been over two years since Dad died but the memories of PSP are still raw. Cherish the time you have with your dad. Love Ruth x
Rapid Decline
Feeling sad
Cognitive problems related to PSP
Thought it was too good to be true!
