I am writing from Finland and my dad was diagnosed just last year with PSP. The symptoms had been there for a quite a while (about 5 years) but the diagnosis took its time due to the rareness of the disease. My mum is taking care of dad at home and I am helping as much as I can. We got very little information about the disease when the diagnosis came: just an A4 sheet with a few facts. I've done a lot of research on the net and this is how I found this site too.
Now I decided to write since something has happened. After Christmas Eve my dad has taken a huge lunge downwards. He hardly speaks, can not move his legs willingly (or it takes a long time) and the night time urinating has started to be very frequent (even 10min apart). He can still eat solids by himself but coughing and i.e. blowing his nose are very hard for him. I wanted to know has anyone experienced such rapid progress for the worse? Or is this just a bad episode? Dad doesn't want a catherer (or PEG for that matter) but at this rate I think my mum will not be able to take care of him very much longer.
My dad and I have always had a special bond and seeing him with this horrific disease is breaking my heart. Specially when I feel like there is nothing I can DO to make it stop.
Happy New Year to everyone and thank you for reading my post!
Regards,
Pia
Written by
red_boots
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I'm very sorry to hear about your dad, so very sad!
I'm afraid the decline can be rapid at times. I don't know what help is available in Finland but if you can start looking into getting carers in this woukd be very beneficial to your mum n dad!
My dad too has Psp and is now bed bound absolutely heartbreaking
Welcome, Pia. So sorry about your father. I think the general response here to a very sudden downturn would be to wonder whether there is a urinary tract infection or perhaps another underlying illness, like pneumonia, also very common as you probably know. An external catheter, which most commonly is a condom with tubing and a bag may solve one problem. A catheter that is inserted and then removed after the bladder is emptied, often just once at night before bed, is another option. My guy couldn't tolerate the installed catheter and the condom type made him shrivel shyly so it wouldn't stay on, so he wears diapers, layered, and we generally only have to change them once a night.
But I hope thr General downturn may be treatable. I hope he has a good physician who will help.
Thank you for your reply. The thought of pneumonia had crossed my mind too as we've all been ill with flu here. Dad has a cough but no fever whatsoever though. I will ask the nurse when she comes tomorrow about a test. Dad wears a diaper but it is not enough I'm afraid. I have asked him about a catheter but he does not want one as long as he can still go by himself.
I use two diapers and a pad. I poke holes in the pad and the inner diaper in hopes that the liquid will wick through rather than escape out the sides. It works well enough. At least we are not getting up every few minutes at night so he can try. Good luck, Pia, please keep in touch.
Thank you! I will pass that trick on to mum! I feel so relieved I can finally talk with people who understand. So sad mum doesn't speak english well enough as she would need this even more. Will do for sure and sending you lots of good wishes!
Welcome Pia! Glad you found this site. It has been very helpful to me. My husband has psp and earlier this winter we had the flu. It caused a drastic downturn in my husband but as he got better, the downturn reversed mostly. He even had hallucinations. I wish you and your mother all the best. I know it is difficult to see your father like this but being there for your mum is so important. I am very glad she has you.
Thank you PSPwife for your kind words. It is indeed a difficult disease with many difficult decisions to make and hard to know whether they are always the right ones. Wishing you all the best and happy New Year!
My mum has PSP, mid to late stages. Unfortunately PSP as others have said can result in a sharp decline and then stabilise for a period of time. With regards to night time toileting, my mum was the same. We had to convince her to wear a diaper initially because neither she or my dad could get any sleep. They were both exhausted, the diapers helped for a period of time. However, retention in the bladder meant that a catheter was the best long term solution. It enabled my mum to have some of her dignity back and eased the pressure of my Dad. It is very scary at first and we were very apprehensive about the catheter but it really was the best decision for all. I hope this helps. You will find the forum a great source of information, everybody is there to offer support and advice. You'll learn more here about PSP then from any Doctor.
Thank you am2015 for your helpful reply. I will try and bring out the subject once more, see how my parents feel about it. This forum already seems a lifesaver! Not many doctors know about PSP at all. Sometimes I feel like I know more than them too
Welcome to the site Pia, it is a very informative and supportive with lots of lovely people contributing. Would your dad consider wearing a convene which is non invasive but saves getting up every few minutes , wet beds or using pads whilst it is just his bladder misbehaving. My husband wears one and it is a lifesaver, especially at night as it allows me to get some undistubed sleep. It takes a bit of practice to get it right but once you have mastered the art it's of great benefit, it also allows you to go out without having to worry where the nearest loo is or is the pad leaking. The main thing is that you empty the leg bag now and again which can be done very discreetly, especially if you carry a uribag that folds away after emptying. Brilliant.
I hope your mum finds a solution to allow her to be able to cope looking after him. I'm sure with your support and the agencies that need to get involved you can travel this journey together.
Thank you for your reply. I must ask you what is a convene? I couldn't find it in the dictionary and I'm not sure if you mean a catheter? I'm sorry I don't understand
Hi Pia, a convene is a sheath that fits over the penis to which you attach a tube leading to either a night bag or leg bag for daytime use. The one that Ben uses is a Conveen Optima and you can see on utube. When my husband was hospitalised last June the nurses trained me how to apply it. Here the bowel and bladder nurse helps too. It takes a bit of practice but you get used to if it's right or not. The good thing is that it isn't invasive so less chance of infection.
I agree with above comments. My husband has PSP, diagnosed Nov. 2013
When he has even a slight cold or after a fall he goes downhill and then recovers a bit. It is a pattern with him.
I put a convene on him at night and its meant I get a nights sleep.
During the day I put one on if he is going out. He got used to it quickly but for some reason takes it off in the early morning and wets the bed. I have the choice of interceding early or risking a wet bed pad. At least I have a choice !
You are so right r_b, PSP is a horrific disease. So let me be candid
It sounds like you have not really had a talk about palliative care in a nursing home....As you know, the life span with PSP is 6 to 9 years...Since your dad has had PSP for at least 5 years , this downward turn may not be one that he can fully bounce back from. PSP is a very windy road, some don't experience much for a while, others seem to bank pretty quickly.
So again I will ask if Palliative care has been considered? For your mum, you might consider palliative care outside the family home, especially if there is little help to come in and take care of your dads needs. The older the mate is, the harder it is to take good care of the patient without causing a quick wear-down to the mate. Your mum has already been through 5 years of this....Do think of her needs when thinking of your dads needs. I'm sorry but you're dad is not going to get better...forgive me for being so painfully frank. At this juncture or in the future however, if your mum is older, you may want to consider her needs first.
With all these words of gloom, please let me welcome you to this site...I am glad you are researching PSP. This is a good site to ask questions give answers and just vent. I pray that you find a good solution to your new situation; and find comfort and wisdom in the new year.
When there's no one else, there's still God. Please ask of Him to take care of your needs.
Sincerely,
AVB
If any of you lack wisdom, let him ask of God, that gives to all men liberally, and deny him not; and it shall be given him. James 1:5
Cast your burden upon the Lord, and he shall sustain you, He shall never suffer the righteous to be moved. Psalm 55:22
I agree with all that has been said, my husband was diagnosed in 2014, it has been a horrible journey, we are sure he has had PSP for at least 5-6 years, he has a caterer, which was a god send, his is in a wheelchair all the time xxxxxx
Just wanted you all to know dad is doing better. We are sure now he had the flu and we just didn't know because he had no fever although the other signs were there. The nurse came by this morning and we are going to try the external caterer (convene) and are pretty hopeful about that. What comes to the facts of this disease I am sure we all know them and are aware. In our case we are not taking dad to a care home as long as he can still move himself and he still eats solids and talks. We think (now that we know) that first signs of the disease started about five years ago so we are entering the sixth year now, taking one day at the time. Also we have this saying in finnish that goes along the lines that worrying something beforehand is suffering it twice. I try to keep positive and enjoy as much as I can my time with dad while he is still here.
Sending positive vibes to everyone and wanted to thank specially Kate and easterncedar again for their great ideas and advice!
Remember this is a progressive diesase. Learn sign language even if it is just the ABC's very important because communication with loved one will get very hard make hand signals fore things they might need or want that they cant say like for remote for tv, cold , need drink or make hold up paddles for them with words on them it will also help you from pulling your hair out and yelling because you cant understand what they need. Get power of attorney done at least one for medical because you will be their voice he will no longer have one, and you must make your voice heard because medical people dont love him like you and its just a job they do not care like you do. Lay with them even if it is to eat a popcycle. Look at old pictures or read a book to them / My best advice to you is put your self in his shoes think what if that was me. I have to do that alot like when I get fustrated , another thing that is amazing get him in a warm water pool it will warm your heart so much to see the smile on his face when he can walk again exersise is so important or they become so stiff But most of all love them and laugh with them. Its hard and you have to be strong no matter what the cercumstance.
Welcome to this often crazy but loving site. I'm sorry to hear about your dad. My mother in law has CBD which is PSP's sister disease. The one thing that I have not seem mentioned here is making sure that he is getting a good nights sleep. We had the same experience with my mother in law getting up every hour on the hour at night to go to the bathroom at night, because of her dignity she would not go in an adult diaper but when she went nothing came out. So, in talking to her movement specialist we decided she needed a good nights sleep. Trazadone helped her immensely. She is now on a schedule for the bathroom and there have been no accidents and she sleeps the entire night.
Every comment about getting ready for what comes next are very wise, living will is probably the best thing as that allows you or your mother to make medical decissions for your dad. Since you have decided to keep your dad at home, get the house ready with all the safety features and arrange extra help for your mom.
I am glad your dad is better, like easterncedar said with these diseases body temperature is often effected so infection or the flu will not be immediately diagnosed.
I like to keep a brief description of CBD/PSP with me at all times, so when new carers or doctors appointments arise they are fully aware of the situation.
Another thing I found very helpful is to keep your dad moving and mentally stimulated. Alphabet cards and sign language are great tools because when his speech becomes effected this will be useful.
This site has been my safe haven for the last month, I have made friends, found information and been able to talk to people who know exactly what is going on.
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Hello - I’m a new member and first post.
Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
