I am from NZ and am reaching out to a larger community to get some advice. My father had slowed down needing to stop while walking. In 2019, he got a Parkinsons diagnosis and was on various meds. At the end of April 2022 still at home, and with no aids, his legs suddenly gave away. He was taken to hospital where he stayed for 5 weeks and his mobility deteriorated. Within the first two weeks of hospital, he was diagnosed with MSA and then finally PSP. Begining of June, we took him home but his nights were difficult. He got up many times to toilet and needed help and was also very agitated. Mid-June he went into a resthome. Today he can only take a few steps and his legs are very wobbly. He often sleeps and he has a lot of difficulting opening his eyes. His head seems to naturally flop forward.
While I do realise that everyone's PSP journey is different, I really hope that he won't linger on in this state. To go anymore than a few steps, he now needs a wheelchair. He is too stiff to get into a vehicle now, so any we utilised specialised wheel chair taxi services to take him anywhere. In the space of 4.5 months he went from independence to this. We have done power of attorneys, wills and sorted finances so we are prepared for his passing administratively. What can we expect going foward as far as his condition goes. Is there anything we could do to ensure increased comfort.
Thanks in advance.
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OllieFisher1
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So pleased you found this site too! You will find support and help from both sufferers of PSP and other brain sicknesses and from those who care for them.
They have practical answers to every obstacle, and will listen right through any length post ranting at how many loads of washing have been completed - completely understanding the need to reach out and the exhaustion and frustration behind it!
My hubby's CBD journey was similar to your dad's with PSP. He lost mobility over several years, and then suddenly collapsed unable to sit up. He was admitted to hospital and deteriorated further and died in 3 months. This site was the one sane message during that period, since speed and symptoms were manic and unbelievable. You can read my hubby's story if you long press my emoji.
Even though this was 5 years ago, I still drop in here regularly. There have been a number of posts from New Zealanders. I can remember 1 from Napier, 1 from Auckland, and there was 1 in Christchurch in 2016 when I joined. I am from Hamilton!! Have not seen posts from any 'locals' lately.
Message me with your details if you want to. We could safely exchange personal stuff.
Hi Jen. Thank you so much for your reply and am sorry for what you have been through. I had never heard of PSP before my father was diagnosed and to find a community and reading through old posts is very comforting. I know Dad needs to be in a resthome and we have all accepted the disease is out of our control and all we can really offer him is love and support. To watch him struggle so much with everyday tasks to the point he needs help with toileting, dentures, feeding etc is really sad. I know no one has a crystal ball but I really really want one.
I have learned a lot of the following from this site, as well as personal experience as a carer. Use the Search function to answer your queries. It will pick up posts and replies that have gone before.
Keep him moving as much as he is able. Get physios involved to move hands, neck, head and shoulders, knees, hips. Otherwise he will stiffen and cramp in position. Neck is important, as he will find he won't be able to look up and talk with people.
Botox injections have been mentioned as helping for a while to release stiffened and bent joints. I have no personal experience of this. If fingers curl into hand they need pulling out and massaging or fingernails will damage palms. Keep nails cut as much as possible and roll a flannel to hold in hand.
Use the wheelchair as it will help him socialise, but mobility will need to be maintained.
Get physio to help him walk with a walker, supporting him with a belt, even if it is only a few steps to begin with. Lack of mobility will reduce once movement stops.
'Dance for Parkinsons' got my hubby up and mobilising and socializing. See if there is a Parkinsons group near you and get the nurse to visit you both at the resthome.
Check his eyes are focusing forward. Don't understand fully but PSP patients seem to be helped to see better by prism glasses. Someone else will explain why, for sure.
Check his meds. Parkinsons meds generally seem to have little effect on other brain illnesses (not all tho). My hubby hated Sinamet as it made him very dizzy and nauseous.
There may be other meds that make him sleepy. You mentioned agitation. He could be on antidepressant or sedative. Ask if the dose may be changed to reduce their effect, while still being effective against the agitation. Quality of life is important, especially alertness, when so many physical aspects have suddenly gone.
The agitation may get worse, there may be tantrums, and staff will want to be assured of their safety. It may not be an easy time ahead for all close to him.
However his mood and behavior, keep communicating with him calmly (if possible!). I believe there is a very frightened person inside him trying to make sense and help himself. Reassure him you will be there.
Try and do things, make things happen that he enjoys. Eat chocolate, icecream (see daddyt posts), walk in park in wheelchair.
Try and develop a body and sign language you can both relate to for when his ability to communicate gets limited.
Encourage others in the family to read this site. It will help them understand what is happening and how others get through its ups, downs and crappy bits.
Pleased your dad has organized the paperwork so far. The very difficult bit of End of Life also needs discussing. Decisions on PEG or not, DNR or not, brain donation or not. Not an easy discussion, whether in your prime or in the midst of a brain disease. It will be helpful if he has already made these decisions should the question be raised by Medical staff.
I found the POA for medical decision making did not work well for us. Because hubby was conscious at breakfast and the ward round, the doctor would not sign over decision making to me, and was still suggesting he could live another 12 months at the time I was making decisions of where he would live after discharge without a great deal of input from him. He knew what I was doing but not with clarity.
That's more than enough to think on!! I will leave it there. Take care!
Thanks Jen again. I will look into getting a mobile physio. He had a fall yesterday while trying to get out of the wheelchair - the seatbelt was not on, and I think he forgets he cannot walk or he feels he can so he tries. We do take him home often now, - Mum has made some alterations to the house to give him a little set up where we can take him from resthome (over the road) and he can spend a few hours each day in his own home. Builders are midway into constructing a ramp so we can push the wheelchair into the house.
Interesting comment about Sinamet - Dad was on that and he reacted the same way as your husband. Once dad got his PSP diagnosis, they stopped all parkinsons meds. He is only on one drug now for low blood pressure.
I saw your post about the EPOA. We just got Dad new ones to be in effect immediately with no conditions around mental capability. The lawyers asked for a doctors letter to state he knew what he was signing and since then we have had no issues. If ends up going to the hospital for any reason, the lawyer reckons thats where there could still be an issue.
One great thing is that with all of Dads issues, he is not in any pain. Its actually quite a big comfort, but reading about needing a tube for feeding is scary. Perhaps its just an adjustment that will come similar to accepting he needs aid for all bathroom activities.
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