I was totally gobsmacked whilst talking to J about his visits to London this week to see his consultant. He has 2 appointments in London this week going on 2 different days. We live far from London so an ambulance transporter comes to collect him. Now bare in mind he has had PSP for 10 years he cannot put one foot in front of the other. Well his words to me were "I am going to ask my consultant to give me something to make me less tired so that I can drive again". I was just speechless. What can you say!!!

40 Replies

  • Your post did make me smile although it is also very sad. Can't think of anything worse than sitting as a passenger in a car driven by Ben, it terrified me back when he was still driving and spent a lot of my time drawing deep breaths clinging to the side of the seat. Are your trips related to PSP or other medical conditions?

    Love Kate xx

  • Hi Kate yes Js appointments are for Neurology x

  • I echo Kate's words. C's driving was a nightmare before diagnosis. I'm amazed J is still speaking after 10 years. C lost all speech by the 5th year and stopped walking about the same time. Long may J remain positive and not too disappointed when he realises he can't drive again.


  • I did try to explain that he could end up killing someone and that I didnt think the DVLA would allow it. I just think its denial all the way very sad xx

  • S asked his personal trainer to teach him to walk again, the other day! The crazy thing is, he can still walk with her. I can't get two steps out of him, when trying to transfer him, but a few days ago, he walked (with assistance!) well over 100 yards outside. Different part of the brain I suppose, God, this disease is so frustrating.

    Lots of love


  • oi did sa,e tpdau with physio ca nt doi same iwiiiith myy partner either don't know why eather

    l ljlll


  • Hi Jill, lovely to hear from you. I think it must be a different part of the brain that deals with exercise, rather than just movement. Shame the professionals aren't finding a way to channel this and finding a way to train this part of the brain to take over, at least some of normal movement. Who knows where that could lead to and what PSP sufferers could regain.

    Lots of love


  • I think you're spot on when you suggested that it is another area of the brain that deals with exercise. My neurologist tells for all that they know about the brain, which is much more than they knew 10 years ago... they still know very little. PD and PSP patients have overlapping symptoms. Clinical trials have found that certain kinds of exercise can help minimize the effects of tremors, rigidity and the like. I think they call this a kinysea paradox ? .... not sure on the spelling. Researchers are now trying to understand what is actually going on inside the brain that allows the patients to do well with the exercise regimen, only to have the symptoms return a while later. Their hope is to identify that particular area of the brain and come up with a treatment that replicates these positive effects... the word neuroplasticity is often bounced around. I have said this before, and maintain that daily exercise has made all the difference in my mobility and to help slow the progress of my PSP... I'm not foolish enough to think that I can cheat it, but it may buy me (and others) some time. I think research/medicine is on the cusp of finding at the very least... a treatment. There is a whole new approach from big pharma on how they look at PSP, MSA, CBD- all neurodegenerative diseases with overlapping symptoms... including PD. It is simply a numbers game, and because the numbers of those of us afflicted with this disease are quite small by comparison to PD. It does not make good business sense for them to invest in research and development of a potential treatment drug. However, if they lump them all together- including Alsheimer's, they may find a back door that will lead to the treatment of many neurodegenerative diseases. The numbers now make good business sense and worth persuing.

  • Yes! I do think the research is forging ahead, and they are on the brink of finding a treatment, so keeping as fit as possible in the meantime is a good plan!!

  • Hope and Faith (:

  • Hey, Tim! I see you are from Ontario. I live in Maine now, but was born and raised in Niagara Falls, NY and my family has a place in Temagami, my favorite place on the planet. Ontario is enormous, but what I know I love, so, may I ask whereabouts you are?

  • Really? So Jill, are you saying that you try to do the same things with your partner aas you do with your physio? That's kinda like what LIzB says in a recent post!


  • That's so interesting, Jill! That's the same for us! My guy definitely can perform much better with any stranger than he can with me, and now, after many months, than he can with the two everyday aides. They used to have the same effect, but it has worn off. There has to be something about how the newness of a person brings his attention to bear. i have spoken to the therapists about it, asking them to stay on longer than they want to because my guy gets much more therapeutic benefit from the work he does with them than he does with us when we try to replicate the exercises. They stay as long as insurance allows, and we are left to try to get his attention!

  • I know, B is the same way...somebody else, and a light switch goes on; me, not only is there no switch , there's usually an explosion I have to clean up after!


  • Can be the same here. Cycles... though I'm not sure if they are hers or mine some days. :(

  • Hi Escada29

    Yes, we go into London for neurology too.

    We go on the train. I keep wondering if we will make the next appointment. The issue is pushing L's wheelchair up the ramp into a London Cab.

    We don't really get anything out of the appointments. Perhaps when L is worse there will be more with some amelioration of associated issues?

    Liz is part of a study where they monitor the decline in various areas of her thinking and brain function.

  • Sorry - I got distracted there and hit 'submit' .

    We were talking about the development of GPS cars yesterday. L really brightened up... "Good I will be able to go out on my own again!" No thought for the struggles we have doing transfers, or the need for her wheelchair to be pushed.

    One of the things which went fairly early was 'sequencing' the ability to arrange tasks in order to reach the desired end.

  • So smart, to have that kind of study! how often does she have to attend the monitoring...Do the trains have wheelchair or handicapped accessibility? I remember one fellow here described his ride on a train; already walking like a drunken sailor when the rails hit a bump and bam right into the seat of a ...as I remember (This might be my own perception) a fully-breasted woman sitting in her private room...oh we laughed at that one...what a way to meet people huh?


  • Your post made me smile - needed that today.

    The trains are good... The stations we use are totally on the ball. St Pancras too. We book a ramp in advance and got to the office... They lead us to where we need to get on... put the ramp up to the train and I just push the wheel chair on. They then telephone forwards ans there is someone with a ramp at the other end right outside our carriage door.

    The Taxi ramps are steep. The moire sussed drivers pick I high kerb top lessen the slop of the ramp.

    But why oh why do we get lumbered with Friday late afternoon and then have to face the London Friday night rush hour!

    We go every six months. they just ask a lot of cognitive function type questions and do the usual PSP tests, movement eye movement and so on.

    They should come here and see the posts of difficult behaviours.



  • Not a bad idea! Observing one in their own environment would I think, tell much more about the patients behavior and reactions. I n\know it's not as controlled a study but they could at least see if different environment garners different response from the controlled studies ie downward gaze cognitive aware per specific questions or quick tests...but really just observing allows the assessor to see so much that a written or controlled study can not!


  • Totally agree. 24 hours in the life of PSP, gosh wouldn't they get a shock!

    Lots of love


  • That was Peter Jones, I wonder how he is, has anyone heard?

    Lots of love


  • Heady, Do you remember that story from Mr and Mrs Jones (thats' what I call him) I can just imagine a fellow PSPer trying to walk on a train!!!! Yah I miss you mr Jones~


  • I remember lots of his stories. I miss him too!

    Lots of love


  • :)

  • me too

    lol jllill xxxxx

  • Bless his heart!

    I think it takes a long long time for the patient to accept this dreadful illness and can you blame them, noooooooo!! X

  • My mum is still insisting she is not ill and my 84 year old dad is quite able to look after her. She is about to be given palliative care!!! It is so so sad

  • Well you just do that J? By the way what do you think about....? and get that conversation going...content not as important as the person talking! Is'nt it amazing !

    Keep chattin'


  • Wi think they all think they can do what the use to do, George says he is goi g to build extension to our house, and he is going to dig it out himself. Yvonne xxxxx

  • Kevin do you go to the hospital in queens square? If you do which doctor do you see? George goes there Yvonne x

  • Yes,

    The wonderful Prof. Hugh Morris :)

    He can't do much, but he takes such care and somehow we both feel better when we leave.

    He is moving us across from the study team to his multidisciplinary team so L gets scrutinised by Physios et al.



  • Yes we are under the wonderful Prof. Morris, he is the most wonderful doctor we have ever met. Yvonne x

  • Oh yes can relate to your mail. My husband was out with me and I was struggling with him and we saw a lady with a disabled person and my husband said "is'nt that sad that she has to look after him" I was also speechless, but had to laugh to myself or go mad.

  • Oh gosh totally oblivious!!! xxxx

  • Thanks PUTLAND! That made me laugh! Where do these comments come from? This is my life too! Ugh!! Gotta just keep laughing!


  • Escada: I just love that he is wanting to drive again soon. He is not giving up! That is what I admire about my husband. He just won't stop doing things around the house even when it takes him forever to finish projects. He is such a risk taker! We are only a few years into this disease (PD since 2012, PSP since 2015) and he moves slower and slower every day but never says "NO" to an outing. The down side to it is that I have to be watching him constantly! The other day I mentioned to him that my car needed gas and while I was getting ready for work, he just decided to walk out the front door, get in my car and drive to the gas station. I noticed it was quiet in the kitchen so I went to look for him and noticed he and my car were GONE! I freaked out and looked up the location of his phone and keys on my phone (Friend Finder and Tile) and noticed he was still on our street. I called him and calmly asked him to make a U-turn and return home as soon as possible. He said, "WOW, there sure is a lot of traffic out here"! I think my head started spinning at that time! lol! He did say "OK" and then I kept tracking him until I could see the car in our driveway. It is that kind of stuff that is going to kill me! I think I need drugs too! LOL! Today I am laughing about it, but I wasn't laughing that morning!!! I was so stressed and mad at the same time! PSP life is awful!


  • Nikkie your post did make me laugh too but on the serious side I can imagine the panic you felt. It was similar the other day I said I needed something from the shop and he had the idea that he was going to drive to the shop for me except he would not have made it out the front door lol!!! xxx

  • Yes! It is so interesting the way their minds think. They really think they can do everything just the way they use too. It is heartbreaking to watch. I am just so grateful that I am a vey patient person and just keep telling myself, it's not his fault. I just follow him all over when I can and I am grateful that he is still independent. I do remind him that he has a fantastic personal assistant---ME! LOL! He just smiles and says, "you're right".

    Hang in there Escada29! We are all in this together!


  • Aaaaaaaarhh!

    Bless him.

    DenB x

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