My father was diagnosed with PSP a year ago and has been taking medication for parkinson disease two years before that, but I believe he is suffering of it many years ago as he started complaining of weakness in his legs and unable to walk for a long distance, then repeated falling with many many sutures all around his body and fracture of 4 ribs.
He was very active person, he loved walking and chatting with others and caring about his family, relatives, friends and others, so many people were depending on him and he was such a strong independent person! This seems to be a common character with many sufferers before having this disease.
Now he lost almost all his physical and mental activity, walks with great difficulty and gets tired after few steps, can't get up or set down alone, any time he goes of of the house he is so exhausted and stays in very bad condition for many days after, although he likes going out but unable to and it happened many times that he intended to go out but could't and felt asleep, so he now goes out rarely, he coughs so frequently with food or fluids and sometimes with nothing, all these symptoms I find it with others having PSP but the most strange and recent thing happening that he sleeps nearly the 24 hours 6 days a week and one day only he is awake for few hours. For the past two weeks he is sleeping till the afternoon, gets up and we try to feed him he goes to sleep on table and we take him back to bed.He only takes one incomplete meal and this meal became less than half the normal usual meal for him, and he takes minimal amount of fluids that scares me because I am afraid of dehydration. I think he is afraid of coughing everytime he drinks.
He used to feed him self till one month ago when he seemed not interested in eating or have no energy to feed him self but in the past two weeks he is refusing even to eat even if someone will feed him.
I just wish I can read his mind to know what is he thinking about or what he needs, if he just talks to express him self so that we can help, but this is very difficult to him. He only says few simple words a day like no or ok and that's all.
What I am describing was happening in episodes between which he was doing fine but the periods of fine attitude became smaller and smaller until it disappeared.
His neurologist tried many medications for brain stimulation and what so ever but all of no value.
By the way I heard about the coconut oil in this site and he was taking it regularly in the past two months but nothing has improved the disease it is just progressing in its way.
firo
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firo
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About two years ago, John’s neurologist told us to expect that as John’s disease progresses we should expect him to sleep for incredibly long periods as he had come across people with similar neurological conditions who sleep a good part of the day and night. I recall that he explained it as a natural way for the body to refuel and keep the body’s internal organs working. This is just now starting to happen to John - the windows of opportunity to be with him as I have known him are getting smaller and smaller.
At the time I spoke to John’s neurologist on how I saw John's disease as an illness that is causing him to age well before his time. I equate what my husband has been going through over a few years with what my great grandparents went through in the last couple of weeks of their lives. Is this perhaps also where your father is?
To help me become better equipped with what to expect as my husband’s illness progresses I have met some people with PSP and other similar neurological illnesses. It has happened by default - the respite home my husband stays at now caters for PSP and other similar neurological conditions. It is at a great location - close to the beach - but following each visit I have so far made, I get back in my car and burst into tears. It seems that everyone there is quite accepting of the situation. Nevertheless, I see people who have lives robbed and cut short, who now have very limited energy to give. When I recently told a girlfriend about it and how distressing I find it all – she said I was going through one of the stages of grieving and until I accept what is now, and not what should be and make the most of what is - I will continue to find it all very hard to handle. I do understand what she meant – but it extremely hard watching the deterioration of someone you love so much.
Regards,
Alana – Western Australia
N.B. My husband is very fortunate to be a participant in a trial pilot programme funded by the Australian government that is available to only a handful of people in Australia with neurological diseases. John receives high levels of care and equipment on a ‘as needs basis’. Hence, the opportunity to stay at a respite home close to the beach that is purpose built, well equipped and designed to meeting the needs of someone with PSP.
So sorry to hear your husband is struggling with PSP. Has he seen a speech therapist? They can assess swallowing and make recommendations to reduce coughing.
Mum also got to a point where she was sleeping 18 out of every 24 hours and not really eating anything. But things improved for a while when the neurologist changed her medication. We stopped clonazepam and started on Modafinil (which is a drug used in narcolepsy). She was much more awake in the day and went back to feeding herself. I have to say the level of improvement has dropped off again slightly now but she is still better than she was before the change of medication.
Some days she needs help with eating and most days she has an afternoon nap but she is generally awake in the mornings.
My father's condition was fluctuating exactly as your mother's but he is in the sleeping mood for the last three weeks and i am so scared that it won't improve again.
The problem with my father is that he doesn't cooperate at all with doctors and when he was able to talk he didn't believe he had a medical problem he believes that he can't walk because his left leg was put in a cast years ago "just denying" !!
I can feel him suffering now because he can't bring the words to express what he wants to say which is very hard to him.
I noticed that this deterioration happened when his neurologist added a new drug that is Lamotrigine when i complained to him about those episodes when he stopped talking and freezes but he advised us to stop it when I told him about this sleep and we already stopped it many days ago but no improvement happened!
As I am trying to place my feet in your shoes - I now wonder rather than what I write above - could your Dad being going through a state of heavy depression - . At times John would not sit down to eat, and decided the only time he was going to have something was a night time raid of the fridge or when we went out. He was convinced that he would choke if he sat down to eat at home, said he felt better to stand (thats what he told our daughter, but noone else). So I followed up with doctors, they said I'd have to accept the stage he was going through as he was resenting the illness, all those around him and rather depressed for his predictament. The medication he was on already was the best that could be offered.
If I'd realised it all sooner (and in hindsight) I probably would have dragged him away from the home for a short holiday to try and get him to realise there there is a world out there that he could still enjoy!
Regards,
Alana - Western Australia
N.B. That and more cuminated til about a year ago when John decided to leave the family home and move in to care for his mother (yes - very strange - But I am finding out that PSP can cause some people to act out in different ways!)
i don't know if he is depressed but he is on antidepressant actually so many types of antidepressant were tried with him but i feel no difference with or without them but i don't have the courage to stop it. what i really know that he goes in deep sleep not just staying in bed awake and even nothing can make him awake even if his phone rings he never wakes up which was a great stimulus to waken him before, I even used to ring on his phone from the other room to waken him if he was sleeping for a long time ' of course this was in the past"
one reason for him being depressed could be his inability to express what he wants in words which is so apparent recently
Best wishes
firo
Dear Firo, so sorry to hear about your father.I lost my mum to PSP in February this year. As far as we can track backwards she definitely had it for 6 years before she lost the battle but it may have been a little longer as she was also fiercely independent and did not tell us the half of her problems until it became necessary to tell us.
I was told that the depreciation of appetite is the natural progression and preparation towards the end and that obviously if they are sleeping a lot they are not needing the same amount of energy that we would need. I have seen elderly ladies living on thin air up into their 90s with relatively good health at the care home where mum was. As you quite rightly say it is however very important to get the fluids into them as much as possible. Eating is absolutely exhausting to them. Towards the end of middle stage and entering into end stage Mum would take an hour and a half to eat a soft moist sandwich and 20-40 mins to eat a desert such as custard or yoghurt. At end stage she would sometimes need one or 2 naps in the middle of her pureed dinner. In the end all she really fancied was custard or ice cream and we just gave her what she wanted as what is life if you can't have the pleasure of choosing what you eat? Drinking was less exhausting with a straw with a non return valve which meant after the initial suck, The liquid would be really easy to access and therefore less tiring and more drinking.The straws can be bought on the internet. I got mine from
they arrived very quickly and they are robust enough to last at least 3 weeks each with the right care. I rinsed them out in hot water between every drink to keep them clear and if you can hear the little ball at the end moving when you shake it it will work well.They work with liquids that are thickened with 1 scoop of thick and easy per drink.
Take care and make sure you come on here for any tips!
Dear Dianne, so sorry for your loss I know it must have been so hard and thanks for your advice. It became really exhausting to him to eat or drink or even open his eyes.
Some anti-depressant drugs can take 4 - 6 weeks to clear out of your system. I was given Sertraline about a year after my husband died from CBD. The drug took about 4 weeks to kick in then I felt really airy-fairy and stopped taking them as I did not feel fit to drive. Only felt totally clear of them after 6 weeks. Many drugs have a similar effect but unfortunately when a sufferer has lost the ability to communicate it becomes difficult to get a response on how beneficial or not they are.
Another thing to consider or check into, not that PSP suffers and their caretakers need more stones to uncover, is the possibility of sleep apnea.
I just blogged about his yesterday after getting the results of my sleep study on Thursday. Tho I have been excessively exhausted during the day for years, requiring frequent naps, I never considered myself to be a poor sleeper. In fact, I take a prescribed mild sleep aid at night that has consistently helped me fall asleep and usually stay a sleep over all this time. I didn't entirely understand his reasoning for the sleep study for those reasons, and even after the study I dismissed it as a waste of time.
Until I got the results on Thursday which were stunning; not only do I have apnea, I have severe apnea, and because the majority of it is Central nervous system induces vs. obstructive, it's trickier to treat. Please read that blog of 6-1 for more info.
Without doubt, the various medications PSP sufferers are taking can have sleepy side affects, and the natural progression of PSP can induce a lot more sleep, from my experience and what've I learned about sleep apnea, via a crash course, it very well might be worth visiting your Doc and determining if a sleep study is warranted to rule in or rule out apnea.
It's my clear understanding from my Doc, who I do trust and have great faith in, is the sleep apnea is common in PSP patients and can be quite harmful if untreated. He did state in PSP patients, it's the PSP that's causing the apnea.
I always try to include a disclaimer, but sometimes forget, that these are the opinions of My Neuro in the States, and my interpretations of his opinions which I do believe I am correct in understanding. I also acknowledge there is sometimes a difference of opinion between the Western, Stateside, Docs, and those abroad in the UK and UA.
But the common goal is understanding this obscure disease better, sharing info on treatments, finding a cure of course, but especially improving the quality of lives of those with PSP. If their quality of life is improved, the trickle effect extends to caretakers, loved ones, friends and family.
So if there is a chance that the chronic exhaustion, low-energy level, and daytime sleepiness might have another yet undiagnosed cause-sleep apnea, it's worth checking into and might bring added relief and energy via oxygen/C-PAP therapy.
My Nuero told me on Thursday that my apnea was so severe, a very healthy and younger person would be very negatively-affected by the severity of my apnea. He stated it would be impossible to function normal on any level given that amount of sleep deprivation over the long-term. I might be repeating myself, but he did say it's both common in PSP patients but dangerous/harmful as well.
If you're still interested and read my blog but still have questions, don't hesitate to contact me by message, post a question under the blog, and most certainly, inquire about this with your medical providers.
The results of my sleep study is fresh and raw; still processing; had no idea this was yet another rather common connected disorder to PSP and of seriousness. It will be yet another separate journey getting the mechanics, literally, figured out between finding an appropriate mask, getting the C-PAP custom adjusted for me my needs, and the possible additional 2nd supersensitive machine as a safeguard to counter-correct the CPAP if need be.
However, it's necessary and for the greater good. Looking at it optimistically, and contrasting it to how long this has been going on, if the equipment is fitted and calibrated correctly, it could actually allow real rest at night and provide true physical energy by day, tho I'm not expecting perfection or a reel-back the tape situation where I feel a energized as I did 10 years ago. But an improvement over how I've been feeling for a great while will be something of a miracle.
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