My dad is approximately in the sixth year of PSP since onset, and has recently been increasingly restless and seems to have real bursts of energy and then later on in the day or the next day feels really tired. These restless episodes have led to a few falls recently (two today) and two near misses today as well. I'm his full time career and trying my best here but it's driving me mad! I sit dad down in his chair, make sure he has everything he needs before I leave the room eg remote, water, tissues etc. I double check that everything is ok and ask dad if he is ok and that he will stay seated, to which he replies quite content lay "yes" and then next thing I know he's getting up/trying to get up and then bang, down he goes! Knocks his confidence every time he falls as well. I really don't know what to do anymore. It upsets me too because dads always been a very independent person who ran his own shop for over twenty-five years and now he is so restricted to just sitting down as balance is totally AWOL.
Restlessness, bursts of energy and then bo... - PSP Association
Restlessness, bursts of energy and then bouts of tiredness-how common is this in PSP?...
How old is your Dad? When was the last time he visited his Doc or have you already talked to him/her about this?
After 6 years you surely know your Dad's finest details with his PSP. His recent behavior sounds almost abrupt, and to start after 6 years, would encourage you to get him into his Doc as soon as you can for his safety and your sanity.
It could be something as simple as he's making one last effort to with all his might to be self-reliant? Is that possible?
I'm in the supposed 'early stages of PSP' and have found the chronic fatigue that goes with it is overwhelming. My doc first put me on a no more than 3-4 hour light activity a day, then rest for the duration. No excuses. At first I thought it was over-kill. But I learned in short-order even 3-4 hours a day can be daunting.
Good luck and please keep us posted on what you find out.
hi groovy chick i think they are fairly common in psp because some days i sit in a chair and have trouble lifting myself out of it yet another day i have no trouble at all and when you are tired thats the best time to find you are going to fall you sound like you are doing a good job as a carer i know we are fustrating but dont let it get you down and we know what you are going through even though we look a bit vacant at times and distant we still know whats going on anyway take care regards to your dad and i wish him all the best for me peter jones queensland australia psp sufferer
Here I go again with my sort of medical explanation...bear with me. I've mentioned before that PSP has the common symptom of excessive tiredness, and it is probably due to the little power houses in each nerve cell called mitochondria, which dysfunction in PSP (and may be similar to chronic fatigue sydnrome). Of course, there are several areas of the brain affected in PSP and this overall struggle of neurons to keep firing seems to result in overall lethargy and tiredness. Then, to make matters worse in PSP (and other related conditions like Parkinsons itself), there is "motor recklessness" which makes the sufferer want to move impulsively, whether standing to move (also called the rocket sign), or sitting down (it may also be responsible for the throwing things talked about in a recent blog). PSP sufferers often stretch for things completely out of their reach (and having problems called vertical gaze palsy - not able to look up or down - doesn't help the situation).
Groovychick, your description of your dad is very similar to my wife! She is reasonably good in the morning and then she has to have 3 hours sleep after lunch and never recovers for the rest of the day. I am now by her side 24/7 to transfer her because she can only shuffle a few steps and falls often (but now I am present to catch her each time). I often settle her down in her recliner with everything at hand (like you with your dad) and I'll go in the next room, and I'll hear a bang, and she's stretched out for something and knocked it on the floor and tries to use her "grabbing stick" which she finds manually hard to use and cannot judge distances to use it anyway. YES, it's frustrating, but we are told as PSP carers to realise their actions is due to the PSP. Somehow, we have to be patient (and that's not always easy when we are busy doiing all the other jobs that need to be done around the house).
There are some wonderful people on this site who suffer from PSP and write about their own struggles. They really help us as carers to understand the personal aspects of this terrible disease.
All I can do is encourage you to soldier on, knowing that your dad is in the best hands with you! As a side comment - you mention the TV remote...my wife presses every button on the two remotes she uses until she finds what she wants- while it's frustrating both for her and myself - we do try and have a good laugh about it. She can look at a recorded programme several times in a day and not fully realise she's watched it before! She finds it hard to read now and she told me yesterday she gets stuck on the same page - reading it over and over - because she cannot remember what she's read. Again we try and add humour to each situation if possible!
All the best and take care. (May be time for some gentle persuading to use a wheelchair, if not already, for his transfers around the house - falls may well prove serious if he breaks bones etc. Remember, with every traumatic event like a bad fall, many PSP sufferers will progress downhill a bit more quickly). As others have said...keep us posted!
hello strelly
i can really appreciate what you do for your wife as my dear husband is the same - in fact i worry so much that he does too much - in the house work and garden care not to mention the cooking etc- i have the greatest difficulty in moving around and he practically carries me to the loo etc - i have the chance to get a motorised wheelchair which is what i want more than anything as it would help with my being ablke to help in the house work and in getting myself to the loo - but he is against it as he thinks it will stop me from walking altogether - what do you as a carer think ?
Hello shasha
Like so many carers there come a time when there is a dilemma between using a wheelchair and battling on with attempting to walk (with or without aids) and then falling and having a serious injury (some PSP/CBD/MSA sufferers have spent months in hospital or died from damage caused by falls). It's so understandable for your dear husband to be cautious about a wheelchair when it may "stop you from walking altogether". It is true that using a wheelchair exclusively will eventually cause some muscles to atrophy and bones to be osteoporotic, and possibly cause the formation of dangerous blood clots. However, a physiotherapist can provide suitable exercise while sitting (although they'll attempt to keep you standing and "walking" as long as possible). We have a physiotherapist who is doing just that, and realises that as PSP progresses, in most cases, it necessitates a wheelchair. Eventually most PSP sufferers (not all) will fall on standing and be bed-bound. Even then, some form of exercise program can be pursued, and hoists are used for transfers.
As a carer (from my own experience) even if you had a wheelchair to "get you around", I would be cautious of letting you transfer on your own (e.g to the loo). The unpredictability of falls is ever present, and I'm sure hubby would still want to assist, just for safety's sake. I also think hubby needs to take great care of himself, so "practically carrying you to the loo" may be an unwise practice to continue. If he hurts himself - what then? I do hope you both have had or can obtain handling guidelines from a physio who has specialised in neurological physiotherapy.
I do wish you BOTH all the best in making these decisions.
Just a note of caution again. I'm not sure if you have vertical gaze palsy (cannot look up or down - mild in MSA but can be severe in PSP).....but if so, some find they crash into things with a motorised wheelchair (ruin a bit of furniture or run over their hubby!!! Take care).
All the best.
thank you strelly for your very good advice - esp about my husband who i worry about a lot - i dont get to see my neuro for another 2/3 weeks but when i do i must ask him for a prescription for the wheel chair and then it has to be passed by CPAM ( THE FRENCH EQUIVALENT OF SOCIAL SERVICES ) WHICH MEANS IT IS NOT AUTOMATIC I WILL GET ONE ... so i shall keep you posted .. my best wishes to you and your dear wife
shasha
i do have a degree of vertical gaze palsy which does not effect me much yet - just cant see what i am eating - and double viision
I had a big response written, and lost it...darn it!! I'll try again. I was saying, this sound like what I've been experiencing with my husband. He was always a hard working man, always on the go. Recently he's been trying to do things he shouldn't be, finally had a bad fall, and hurt himself after several not so serious falls, and then he realized maybe I'm right, he shouldn't be doing those things. I think he is so used of being busy, his mind just says "go", but his body says"no". Same thing with with becoming very tired. I think he over does it and it wears himself out. I have done the same thing with the remote, drinks, news paper, made sure he had everything there, but wasn't enough for him to stay put. It's frustrating trying to keep him safe without duct taping him to one spot!! (I'm not suggesting you try that...kidding!)
joan
mr strelley i think you are a champion and a very clever bloke you seem to know more about this psp than most of the drs also you said you and your wife try to have humour in most situations well i feel the same way if you can laugh at yourself i feel it takes some of the pressure off of both of you we all know the end result and its very sad but lets have a laugh on the journey it makes it so much better and easier for all concerned thank you mr strelley for all your input it is much appreciated peter jones queensland australia psp sufferer
Thank you so much Mr Jones for your kind words. After being a medical scientist in a diagnostic department in a large teaching/public hospital for 40 years, I find myself still wanting to explore medical things (even though I'm retired). I just hope I'm not being overbearing with my answers.
They say laughter is the best medicine and despite the terrible nature of PSP (etc) we take every opportunity to enjoy ourselves.
hi mr. strelley you are certainly not being overbearing with your answers and i am very glad that you still take the opportunity to enjoy yourselves the best of luck with everything you and your wife do \\\ i am very happy that you are on our site peter jones queensland australoia psp sufferer
Def not,,sttrelley r
I ,think that u r just doing what u think is,appropriate for us all on the site ie giving us your knowledge about this PSP
Love Jiłl
:-)ps just realized your post is anold 1
i agree
laughte ris a great thing but i tend to cry when i have fallen over too many times in a day
and when i am shouted at for NOT sitting down and resting
i am v restless iwth the PSP and cannot relax at all
and thus am on ghe go for the day from about 5 or 6 in the am until bedtime
but it si an easyh lfie in some respects (buT nto for the carers!)
LOL jiLL
I'm going to do it again...an attempt to find a reason for your condition!
Ignore this post if you want...I get carried away sometimes!
I described above that many with PSP suffer from lethargy and excess tiredness, so why do some complain of restlessness. It seems contradictory. The answer may lie in the fact that a characteristic of Parkinson's (PD) is restless leg syndrome or general akathisia (meaning unable to keep still). No one knows the cause in PD, but it has to do with an inbalance of one of the brain chemicals (norepinephrine).
It's possible that those suffering excessive restlessness may have an overlap of the two main types of PSP (one is the classical Richardsons and the other is PSP-Parkinsons - this latter would have more characteristics of Parkinsons, like restlessness). Note: Parkinson's affects the limbs and PSP the neck and back.
The real problem for some PSP sufferers is that some restlessness is usually caused by their medication (like L-Dopa).
Cheers
Do you know iF anyone takes meds when they have PSP .
My husband has only ever been diagnosed with Parkinsons and takes Sinemet along with the Rotigotine patch . For quite a while I have wondered if he might have PSP.
HIS MEDS ARE NOT HELPING AND THEY HAVE NEVER SUDPGGESTED ANY OTHER MEDICATION .
Hi cabbagecottage
Those diagnosed by a neurologist with PSP are often administered many types of medication for their symptoms (there is no cure/medication for the disease itself). So, they may be tried with the Parkinson's medication like the one's you mention that are connected with dopamine loss or malfunction in the brain (and if they do NOT work, or only works for a few months and the dose requires increasing, then the person probably has a form of PSP (or similar condition) and NOT Parkinsons). Most PSP sufferers do not have a tremor (although a tiny percentage can have a tremor develop).
Some neurologist do not prescribe any medication at all for PSP.
I do not know who has diagnosed your husband with Parkinsons but a neurologist is the only person who can verify if he has PSP (or associated disease like CorticoBasal Degeneration, that usually shows initially on one side of the body).
A neurologist will test for one of the most important signs, namely vertical gaze palsy - cannot look down and maybe cannot look up voluntarily - (this should show up in the first year of symptoms but may not show for up to 3 years). They'll look for certain slow eye movements called saccades that are faster in normal subjects. They look for stiffness of the neck and back rather than the limbs (that occurs in Parkionsons). They may find his neck tends to bend backwards (retrocollis), although half PSP patients have necks bent forward (antecollis). They may even do an MRI to see if there is any midbrain atrophy (called the hummingbird sign). The more expensive and less available PET scan may also be used.
PSP patients usually suffer frontal cortex problems where they cannot recall words or finish sentences, and have other difficulties (called dysexecutive syndrome).
Hope you find answers soon!
All the best.
Thanks Strelley, Thats very helpful . If he does have PSP or something similar would continuing with his meds make it any worse . In particular he drools almost continually which really gets him down he also switches off and is less liable to speak .
He was taking Sinemet Plus and we reduced them to the lower dose it is difficult for me to tell if he needed more or less medication .
I do find he is better with extra company /Stimulation .for a SHORT while . He is under the doctor who deals with Parkinsons in the care of the elderly clinic . Dont know who the younger ones go to ?? .
He has his next appt on June 6th The Dr ,he has been under has recently retire , a very nice man , maybe a new broom will sweep cleaner . !!!!!!
He does seem to have the symptoms who wrote about .
His memory is still excellent in fact he reminds me of things lol.
I have been reading through previous conversations Strelley am I right in saying that you are the male carer in the relationship . I am the wife of a Parkinsons sufferer . I always say that WE HAVE PARKINSONS .
I am a bit of a terrier and try to learn as much as I mean . My husband was diagnosed about 10'Years ago , I think we have struggled with it for most of our 58 years after marriage in one way or another ..
He could never walk up a hill would have to dig in I would have dificulty keeping up with Him , I use to joke that he was dyslexic
although he wrote prolifically all his life his handwriting was so very small , he seemed to read everything other then the written word back to front .
Hi cabbagecottage
As you know, only your doctors can make decisions about his medication, but you can present to them any concerns you may have. If he is found to have PSP then the medications he is on will not necessarily cause harm, but as you already note, they may not work. The other problem with such meds is side effects, especially when they meds are not helping the condition itself.
I guess you'll need to start with first principles when talking to the doctor who diagnosed him with Parkinsons. If you feel he was showing signs many years ago, then it may well be Parkinsons (which can start well before 40 years of age whereas PSP is unlikely to show symptoms until after 45 years of age).
It's always interesting to know that some neurologists that diagnose someone with PSP will be quite vigorous in treating the symptoms with different trials of medications, while others tend not to prescribe any medications until very late in the progression.
While there are hundreds of articles on PSP may I recommend one from the Irish Medical Times that compares (at the end) Parkinsons and PSP in a simple fashion.
imt.ie/clinical/mental-heal...
All the best and take care!
I forgot to say this in my original reply....
Yes, I am the male carer and my wife has PSP.
hello cabbage cottage - have you thought if asking your neuro to take you husband off all meds and then test which ones he is sesative too ?
i was dx with PD untill november last year - i was taken into hospital fior 10 days and taken off all meds - it made no difference to me as it turned iut i have PSP - i do take modopar though for neck and leg pain thiugh which does have an effect though it is short lived
HI STRELLEY
YEAH BUT I DO NOT TAKE ANY EMDS FOR THE PSP- I TRIED CO CARELDOPA AND AMANATADINE TO NO EFFECT#1
SO THE RESTLESSNESS IS JUST PART OF THE PSP FOR THE REASONS YOU GAVE IN YORU PREVIOUS BLOG
LOL JiLL
Mum was like this during her 5th year. It was exasperating at the time as it was such a worry. It tapered off as mum lost the strength to get up any more but she would still wriggle off her chair and get onto all fours and then not be able to explain how or why she had done it. When she went into care they said her chair was too slippery and thought she was FALLING out but began to realise I was right -that mum was wriggling out on purpose. She was worse when they left her feet up as she would get restless legs and try to get out of the chair.It took a lot of repetition for them to finally remember this!
My wife Sharyn has PSP but isn't more than four years into it, from what we know. I attend art class once a week and leave her alone. One time I found she had moved when I returned home. So I told her "If you are going to move from your chair while I'm gone for two hours then I'll have to get a sitter for you". That solved the problem because who wants a sitter or part-time nurse/helper around their home? I make sure she has everything including two phones to call me if she needs help. My class is only five minutes away. I'm sure as time goes by I'll need to get someone to stay with her but for now the arrangement is working. I monitor her closely and if I see any change the routine will change. I make sure she, like your husband, has everything she needs at hand before I leave.
I've found that one outting can knock the stuffing out of my wife and it takes her a day with a long nap and good nights sleep to bounce back. We try not to schedule back-to-back events of any kind. We attend church on Sunday, eat lunch out with church friends, but Monday is a stay-at-home day with no activity. By Tuesday she has bounced back.
Jimbo
It didn't work with my husband. He fell when I was also at an art class and had exhausted himself so much trying to get up that I had to call an ambulance and get 2 strong young men to help. Even they couldn't move him at first as he had become so rigid and I had to help them. I told my hubby if he did it again I'd have to get in help when I go out, and he did. The next time I was only in the garden. So now I call on all the friends who offered help when he was first diagnosed and our sons also help out. He was offered a place at the hospice day centre once a week so I asked for Fridays so I can go to art without worrying. I go to a choir for an hour one evening a week when friends from church come round. I am also learning the ukulele with the local U3A group and he comes with me to that and claps after each song. The only other times I leave him is for appointments. This morning I managed to break a tooth in half whilst eating muslie so have had to call on a friend to come round next week. Joan (jokingly) suggested duct tape. I (also jokingly) suggested one of those chairs you sit on for the scary fun fair rides where the large shoulder restraints clamp you in.
Nanna B
Nanna B, Glad you can keep busy with so many activities. That's wonderful. I love my art class so if someone needs to come and sit I'll do it. Hope you tooth works out ok and the toothfairy deposits lots of patience under your pillow.
Jimbo
but then who will be with your wife ?!!
Hi everyone!
Thank you so much for replies, help and kind words.
JudyJ-my dad is 69 in June, and he has always been a very active individual. He has also been quite a fidgety person! but that's never really caused us any concern, till now, as it has never meant he might land himself in danger. Dad's energy levels are decreasing slowly-he is spending more time in bed as time goes on. He wakes up around 8am and by 12pm he has had lunch and has a two hour nap, then stays awake till around 8pm and then sleeps. We just take one day at a time which is all I think anybody can do with this disease.
Peterjones-what you say is very true-sometimes my dad looks like he is staring into space and then after the event dad starts with the questions he notices a lot of what is going on still! We laugh as a family that he never misses a trick. Putting a smile on dads face is what keeps me going sometimes. Best feeling of the day.
Strelley-your medical explanation does make a lot of sense-it's like a quick fire impulsive response to the brains signals to get up and move get up and move get up and move!!! I've tried persuasion, getting angry, and all sorts to try and get dad to stay still on many occasions recently, sometimes it works, sometimes not. He already has a wheelchair for outside use. The care and social team had previely suggested some sort of alarm which dad would wear around his neck that would let us know when he got up-previously this seemed very excessive but not so much now-if it helps stop dad falling its got to be a good thing.
Laroux-so true, we often joke with dad that we should tape him to the chair! yep, everything is in place, check and double check, and then a short while later, crash bang!!! "I was just closing the curtains properly as I could see a little light!! " he says.
Jillianf6-I feel bad sometimes as I know it's not dad but the PSP that is making him this way. I do get frustrated with him purely because its just a matter of time before that one big knock to the head!
Daughterno1-it sure is totally exhausting! Not knowing when dad's next burst of energy will be! Funny you said that about the chair as that's exactly what dads been saying about his high back chair, he says he keeps slipping off. Dad has restless leg syndrome and kicks off his covers all the time without realising.
Jimbo-I see where you moving from and we did try that with dad when he first began with the restless episodes a long time back, but when we try and make him understand he just says "ok" very nicely like he's never going to do it again the tiredness seeps in very quickly if we take him out, to a social function or to the park or something.
I wish they made patience pills!!!
Groovychickxxx
Ah patience pills send me a very full order. 
Advice please on how to deal with dads unpredictable behaviour...
My rock... my hero... my dad
Going through the nightmare
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