Dave now is his 5th year of PSP has lost since December 2018 10 kilograms (22 lbs.) He is now 54 kilos (118 lbs) and 20 kilograms (44 lbs) from onset.
Doctor asked him if he wanted a PEG tube and he said NOT.
Because inconsistency, specially at night, now he is wearing disposable pants. He didn’t want to and I explained to him it saved time for laundry, smells and mattress.
Dysphagia progressing day by day, he is supposed to be in a soft diet but I let him eat, excepts for rice and beans, whatever he wants practicing the techniques taught at the therapy and it has worked so far. I used lots of butter, milk and he has a Ensure everyday.
I am emotional devastated and I would like to hear your advice, what to expect next and the question that probably sounds cruel but how long?
I appreciate the support and all the great knowledge from this site since it is the only place where you find true answers.
My love, Patty
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Pavaga
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There really isn’t anyway to know for sure when it will end. If he gets pneumonia would be an indication he is losing ground. Most PSP people die from pneumonia. He may survive the first bout or maybe several.
Dad had CBD and lost a lot of weight the last 6 months, nearly 40lbs. He was Dx in Jan 2016 and weighted about 215lbs. At last weighing before he passed, Sept 2018, he was around 120lbs. He also didn't want a PEG and he ate pretty well up to the last few days when he just stopped. His food was small to puree'd and all liquids thickened.
I think you are making wise decision. PSP is terminal and as it progresses gets uglier. I applaud your decision to let him eat what he wants.
I cannot tell you what to expect next as PSP follows its own path on different people.
My son's first symptoms (DOUBLE VISION, DEEP FATIGUE, and SLURRED SPEECH) appeared March of 2014. He was barely 52 years old. He was DX with PD. He was re-DX with PSP January, 2017. By that time many other symptoms had come and gone (some stayed).....dizziness, unpredictable short term high fevers, choking, drooling, etc.
My son had his first bout of aspiration pneumonia November, 2016. It was taken care of with antibiotics taken at home. His 2nd bout of aspiration pneumonia appeared mid-March of 2017, and put him in the hospital for 7-8 days with the addition of sepsis. He could still walk, talk, etc, and I think felt hopeful. He opted for a PEG so that he could come home (failed all the swallowing test given to him in the hospital). He came home on his 55 birthday. within 2 weeks he started rapidly declining.....speech lost, needed help getting up and down from a chair/bed, he could barely see, suffered a seizure, lost all his bodily functions, etc. He was on Kaiser Permanente health insurance hospice. He REQUESTED to no longer be fed. I complied and Kaiser did too. The PEG made that decision easier. He died May 4, 2017.
My son had requested to be taken care of at home. When he went to the hospital he told me he never wanted to return to the hospital.
I am grateful that I could honor his request. Four months before his death (February) I hired a young 22 year old male to stay with him Sunday night, 7:30pm, through Friday at 3pm. I would come by for 3-4 hours daily and spent the entire weekends with him. It took a toll on me as I was then 76 years old.
Sunday night was always so sad for both my son and me after having been together the entire weekend.
I am grateful that MY son was my son, and that I had 55 years with him. He was a wonderful son, kind, compassionate, accomplished, etc. He lived about 10 minutes always in his own home. He never married.....several long term relationships...... the love of his life was playing his bass as a free-lance bass player. He did much with his short life.
Gracias Margarita, beautiful words. This wonderful group of PSP family helps and supports with great answers and words of hope even if the question comes and goes many times. MY LOVE and THANK YOU
My husband passed from PSP in May. He also chose not to have a feeding tube. The path he followed was slightly different than most of what I read. He never really had swallowing issues until very late, about the last 4 or 5 months, but then it was more like his brain no longer told him how to swallow some days. He never had any bouts with pneumonia like so many do. He was never a large man, but lost a lot of weight in the last six months. I doubt that he weighed 100 lbs when he died. There was nothing left but skin stretched over bone. His last 3 months he became less and less responsive to people. Seemed to turn inward. He was taking less and less nourishment during this time. Some days he had nothing by mouth. He just faded away. There were many days that I felt he wouldn't be there another day. It was a difficult helpless feeling for all of us caring for him. Unless people with PSP get pneumonia, I think this is pretty much the path they follow. I hope this answers your questions. I know how hard this time is, not knowing what to expect next. You will be in my thoughts and prayers.
Hi Pavaga, my Mary has lost a lot of weight but it seems to have stabilised because she eats what she enjoys (chocolate, sponge puddings, all sorts of fattening stuff she denied herself when she was weight conscious). She looks fabulous but.......! Recently she seemed to give up, wouldn't eat or drink, and I got very worried and called on the usual gang (doctor,Matron, carers etc). She had been constipated for 5 days. Matron threatened an enema which sorted that out (no jokes about Matrons scaring the s@@t out of patients please). She then developed a UTI which we hit with antibiotics and hey presto she's back. Little things when you are healthy have a greater impact on PSP sufferers. Hang on in there. Love from Rob
My wife with PSP, as I suspect with all with this condition, tires as the day progresses so I give her her main meal mid day - a slow cooked stew of meat and several vegetables - with soup in a nosey cup in the evening followed by ice cream or a bought individual trifle. This regime is working well. Along side she gets CBD (Cannabidiol) 2 drops under the tongue three times a day. I can increase this to 10 drops a day when required. Since on CBD she is out of day and night pads, speech improved as with swallowing. Here awareness has improved such that she wakes me every night when needing the loo to which she is taken in a wet room chair that goes over the closomat. Consequently I never get a full night's sleep.
I want to thank to all the great responses I received. This group has been my best support beyond from all the visits to Neurologist. My love to all PSP friends, Patty
Sorry to hear the current challenges you are both facing. Every person with PSP/CBD takes a slightly different path but significant weight loss seems to signal a change -another step in this journey.
My husband died in April and in his last year started to loose weight, we battled to maintain with all the things you are doing . He too was adamant he did not want a PEG and insisted on eating as normally as possible -though inevitably it had to be a modified diet. Eating was one of his few pleasures and also one of the few choices/control he had during the latter stages of his PSP journey. Although he coughed/choked at every meal -this was his choice one he reaffirmed to SALT and the Dietician only 2 days before his death.
Feel I am at probably at a similar stage with my Mum, she lost >28lbs from August to end November, she continued losing weight until in January she was put on 2 supplement drinks a day and she regained a little (back to end Nov weight), since Easter she is eating less and less, the one food she requests virtually everyday is jelly, which we try to serve with some smooth rich creamy dairy dessert - crème brulee, crème caramel, etc. Some days she will eat a little blended fish in creamy sauce or mashed veg with cream cheese stirred through, she also likes the flavoured instant porridges which we make up with full fat milk with an added spoon of milk powder to keep protein levels up. The last few days she has struggled to open her mouth at all. She too has refused a PEG.
It is very sad to watch and see the beautiful human being you love so much fade away from you. Wishing you strength to cope.
I am sorry you are emotional devastated, this is such a hard psp journey
to follow, you need love and support from family and friends, unfortunately it will end with pneumonia or something else,the pain and suffering will end ,the road to it can be long and hard,we are here to give you all our love,and support and encouragement to the end.
May God bless you and give you strength..xx. Peter
Thank you Peter for your great words. Every person in this group has wonderful words and wise knowledge on PSP. This PSP family has made this journey smoother and I am very lucky to have you. Gracias, Patricia
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