This week my brother was diagnosed with Progressive Supranuclear Palsy and Vascular Dementia.
I joined the PSP Association on hearing the news and I have already been sent a very useful Information Pack.
I'm not sure how much of what my brother's been told by the consultant (who specialises in dementia and memory) and the neurologist (who specialises in Parkinson's and movement disorders) he has understood or accepted because at the moment, it being very early days I suppose, he doesn't want to talk about it and my sister and I are respecting his wishes.
I feel very guilty even joining HealthUnlocked and writing this post and sharing this news without telling him.
We don't know how far either condition have progressed other than we have been told it is likely he has had PSP for a very long time.
He has had very noticeable symptoms of there being something other than age-related forgetfulness, vision and mobility issues since late last autumn (we eventually persuaded him to consult his GP at the beginning of this year) and certainly we have seen a marked deterioration over the last 3 weeks or so. But as he has always been a very anxious man and has OCD (to what extent I don't know but enough that we believed both were affecting the quality of his life to such an extent that we persuaded him to consult his GP) and cataracts (he already had very poor eyesight) could it be that the symptoms of this rare condition were masked by other pre-exisiting ones?
I live 132 miles and my sister 2½ miles from him. I feel rather helpless at the moment as we wait for the next visit to the neurologist and the home visit to assess the level of support he currently needs and a care package to be put in place - assuming he will accept any help and support, he's always been more comfortable turning to my sister and me and our husbands.
I'm sorry - I've writen far too much for an introductory post but since receiving the news last Sunday afternoon it's all I seem to be able to think about.
Thank you for listening.
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EricaE
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You haven't written too much at all. Welcome, although as we always say, sorry that you have cause to join us. It certainly seems likely that what you describe as your brother's other issues could have masked the psp. Many many people, most, I'm sure, are diagnosed with something else before psp is determined. Sometimes it takes years to get it right, and often it is found only because the usual treatments for Parkinson's don't work. That said, the disease is becoming more commonly recognized.
Is your brother on medication for his anxiety? Anti-depressants and anti-anxiety medications are commonly called on for people dealing with the diagnosis of PSP, as it can be a hard one to understand and, when understood, hard to bear. Your brother is fortunate to have you on his side, caring for him, even at a distance. Try not to worry too much. It's a hard road, but not the worst. Best wishes, Ec
Thank you so much for your kind reply. I really do appreciate it.
I think - reading through other posts - we have been very lucky in so much as his diagnosis doesn't seem to have taken very much time at all and we have been spared years of mis-diagnosis.
He consulted his GP at the beginning of the year (persuaded and accompanied by my sister), his GP referred him to a Memory Clinic and there followed a two hour assessment in his home by a Psychiatric Nurse with my sister present. He was consequently sent for a brain CAT scan, the results of which he was given this week on Tuesday.
However last Friday morning, after a near topple backwards into the road whilst out shopping, he ended up having an MRI scan on Sunday morning and was seen by a neurologist who diagnosed PSP. The consultant he saw on Tuesday gave the same diagnosis.
He did go to his GP with concerns regarding his forgetfulness some two years ago and told us that the subsequent blood tests showed all was well and my sister accompanied him to see his GP to discuss his anxiety and OCD not long after - or at least I think it was around the same time, I can't quite recall the timeline.
He was offered anti-depresants (which he refused as he said he wasn't depressed, just anxious) and cognitive therapy (he opted for "by telephone" rather than group - I'm not sure whether or not he was offered one to one) but told me he preferred discussing football with the therapist and I think he began to tell her only what he thought she wanted to hear.
As for now - he hasn't been prescribed anti-depressants following the diagnosis but perhaps when he next sees the neurologist he will. He's waiting for his next appointment with the neurologist whose notes have yet to reach the dementia/memory consultant.
My sister said he was understandably subdued after Tuesday's consultation but after a nice lunch and a snooze seemed to have forgotten he'd been to it and was admiring her house (which she moved into in April) as though for the first time and walking around the garden singing "It's been a good year for the roses". By the time I rang him that night (I always ring at 10pm every night and recently I've been ringing him twice a day) he did remember but chose not to talk about and said my sister had all the details and that he hadn't really understood most of what was being said to him.
I think being the youngest and living 132 miles away he tries to protect me.
One of my current concerns is that we are due to go on holiday in 5 weeks time (since my parents died me, my husband and my brother have taken our annual holiday together for some 30 years now) but we're nervous of taking him out of familar surroundings to an unfamiliar cottage on a farm in North Devon 6 miles from the nearest town. We just want to do what's best for him. We don't want to make unncecessary changes to plans or jump to over-protecting him but neither do we want to put him at risk of e.g. a fall in the middle of the night should he get up to use the bathroom.
Do you have any thoughts on this?
Thank you again for your comforting reply to my first post.
For what it is worth, I would say you should take the chance of a fall and go. Preemptively shutting down life's pleasures will make the road harder and sadder, and in my experience you regret the things you choose not to do more than the risks you take. That said, make sure you have a little first aid kit with band-aids, gauze pads and tape and antibiotic ointment, and some sort of ice pack. Those head bumps bleed a lot but needn't ruin a vacation if you are prepared. Look up the signs of concussion so you can reassure yourself if need be. If falling at night seems likely, you might turn off the water behind the toilet before you all go to bed. My guy smashed three of them, and the flooding was not fun to deal with in the middle of the night.
But really, although the median survival post diagnosis is 7 years now, and many people live much longer, it is a terminal illness, and to the extent life can be enjoyed, I think it should be. I was lucky that my guy was wonderful at savoring simple pleasures, and so he was happy quite a bit to the end.
I'm very sorry to realise from your reply that your guy reached the end and I'm very sorry for your loss.
Thank you for taking the time to reply - your good advice has given us the confidence to go ahead as planned (well prepared) and to "seize the day".
You reminded me that when our Mum was diagnosed with terminal cancer we didn't put life on hold - we carried on as normal, adjusting as her illness progressed sometimes without even realising we were adjusting and continued to make the the most of and enjoy our time together.
For what it is worth, I agree totally with EC. I have a "to go" bag in the trunk (a.k.a "boot") of my car. It has extra pants," undershorts," gait belt, urinal, etc. etc. It think it is like traveling with a little child. Something may happen, or not. Just be prepared. I have found that there is so much energy and time you will be devoting to your brother, that take any chance you get to live, as you did with your mother. No regrets.
As for the toilet. I remember when EC mentioned about the toilet incident. I couldn't imagine that happening and laughed. So we moved to a new place, put in a new, higher toilet and grab bars, trying to be prepared... Within a couple of weeks I heard The Crash. I really didn't think one could break a toilet! The plumber laughed when I said I may see him on a regular basis.
It seems from these toilet breaking tales, as well as the usual numbers for health and care professionals, the number of a good plumber might be a good idea!
I've started preparing for our holiday already. I've got a ground plan of the holiday cottage (!) and studied the information which does state not suitable for people with restricted mobility but as yet my brother is still walking, albeit unsteady on his feet (we encourage him to use his walking stick). He does struggle to get in and out of cars with ease and his diminshing eyesight is a worry as we're not always sure he can see where he's going when negotiating steps and stairs (which inside his own home he doesn't have to do as it's one storey).
We intend to gently persuade him to allow us to assist him up and down the unfamliar stairs and, as suggested by EC, we will take a first aid kit and make sure we know where the nearest hospital is - just in case. I shall now add your "to go" bag.
As it happens - and by pure coincidence - my sister and her husband, niece and her husband and youngest child are holidaying 30 miles/60 minute drive away - reassuring that they won't be too far away.
I am still worried about him waking up in the night, confused as to where he is and taking a fall on his way to the bathroom (which is not en suite but across the landing and will require him to negotiate two steps down on leaving his room and two steps up and a right turn) but I'm hoping leaving lights on will help and I'll remind him to always use his walking stick.
I wonder if there's anything else I can do to guard against him taking a fall in the night should he get up to go to the bathroom? Bell or buzzer to call us to assist him from bedroom to bathroom? No, he would never accept that and maybe I'm under-estimating what he's still capable of.
I shall be visting him next weekend and so maybe when I see him and how he is, rather than imagining how he has become since what will be just over 4 weeks since Iast I saw him, I'll be reassurred and not so anxious to wrap him in cotton wool and tempted to stand at the ready outside his door each and every night!
Despite everything I am looking forward to our annual holiday and I know he is too.
Two things that help my husband at night, and I did take them on our trips-- A removable bed rail (slips between the mattress and the box spring) and a Portable Urinal system (hangs on the bed rail). He no longer had to get up.
Hi and welcome. One of our group with PSP put up a lovely post of his holiday in Devon recently. He had a very simple way of dealing with rough or steep ground with 2 poles. Have a look for Bargiepat. Hope it will help. Seems the positive outlook and one day at a time is all important to deal with this, and no doubt any other terminal illness! Nothing ventured, nothing gained!
Hi there and welcome. Don't worry about the length of the post. One line or a short story, makes no difference here.
Ask plenty of questions because people on here seem to know more about this disease than any professional and it will all be information to help you help your brother on his sad journey.
Yes, it is very difficult when you get the prognosis. I was in the same position and very anxious. However, with help I have now accepted it. We can only hope that a cure comes along soon.
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