Hello All

We have completed Neil's bucket list trip I was hoping to do a little bit more but it was time .We pretty much got it all done.Across Canada (Coast to Coast) and through the US.Great trip and lots of memory's

He is having more difficulty eating and walking.The chocking dose scare me He dose not communicate at all ,he pretty much just zone's out in front of TV.

One day at at a time.

Take Care

Deidre in BC

13 Replies

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  • Well done! I'm sure when Neil is zoned out he is probably reliving all the lovely exciting things you have done together. I don't expect it was easy for you but well worth all the effort.

    Nanna B

  • Hey!! Wonderful to hear from you and congratulations on your trip. It would be great to hear more about it. I found this site shortly before you left, only starting chiming in afterwards, I think, and I've wondered and wondered how you were doing. I so admired your getting up and taking off as you did. Thanks for posting!! All the best, Easterncedar

  • Hi, well done! It takes a lot of bottle to do what you have done! I'm all for it. PSP should not rule our lives, it should not determine how we live, it should not state where we can go or what we can do. In most cases, there are two people, the sufferer and the one who suffers(!!!!) we both need to carry on our lives how we want to!!! Yes, obviously,PSP, is going to have the upper hand, but it doesn't mean it has to always get its own way!

    S and I are in South Africa at long last! It's brilliant, we have just got in from dinner in a very pleasant restaurant. S was determined to walk there and back, which we have done. Asleep now, but he did it. Something he wouldn't dream of doing in England!

    A change of place can work wonders, if only for a little while, so everyone who is still capable of travelling. GET OUT THERE,!!!! You don't have to go far, if that s not your scene, just get a change of scenery. It is possible to leave PSP at home and I can tell you, even a minute off is brilliant, but a whole day ............................. It CAN be achieved!!!

    Lots of love

    Heady

  • Brava, Heady! So nice to hear you are having some fun. Good on you!

  • wonderful heady!

    ou are both a grea inspiration to us all on the site

    keep up you rpostings plz

    loljilll

    :-)

  • How wonderfully inspirational you all are here, my hubby gets his new wheelchair soon and I can't wait to get him out although it will be a battle getting him to let me push him, I tell him, it's my new keep fit regime :)

  • Hi Nan, it is quite easy, pushing these wheelchairs! I've only done it a few times, but Yes, your fitness levels will go up and you will have muscles where you didn't think they existed!!! We always take S's out, if we want to go for a long walk, or in places where I know he will struggle. Most of the time he pushes it himself, but gets in when tired. It actually gives us more freedom, not less. Let's face it, we all can only go places that are wheelchair friendly anyway, I.e. Flat!

    Have fun, we always have a laugh when I'm pushing. Make sure you put your 'L' plates on and Enjoy!!!

    Lots of love

    Heady

  • Good morning Nan, you are right - the wheelchair will do wonders for your fitness and the fresh air will truly refresh hubby! I learned from painful experience - my wife's principally - always always to fasten the seatbelt, and if there isn't one, improvise, even if you are travelling on a flat surface; and try to get a wheelchair with brakes on the "handlebars", not lever brakes on the tyres. Neither of these necessities were standard in France except on lightweight so-called transfer wheelchairs. There really ought to be an EU Directive about safety features on wheelchairs, it woud be more valuable than some of the stuff churned out.

    Good luck!

    Christopher

  • "Very flat, Norfolk", until you have a wheelchair to push that is! Enjoy your new slim figure.

    Mo

  • I'll keep you posted lol... X

  • Hello Deidre, We live in Kelowna, BC. My husband was diagnosed with PSP in 2011. How I admire you for taking on such a challenge. We only managed to get to Osoyoos this summer. I love this site. I feel I don't even have to write in - I just keep reading and any questions I may have seem to always be answered by someone writing in.

  • Talked to the neurologist concerning this issue just Tuesday. He says that if the person could tuck their chin towards the chest during swallowing it closes off the epiglottis which closes off the wind pipe during the swallowing process which cam stop the joking. Hr also suggest smaller bites and to have the person swallow two/three times in between bites to keep the throat clear. I have also found that using a small opening straw restricts the amount of liquid that can be drawn in reducing the chance of aspiration

    Hope the information is helpful

    All the best with everyone. . ♡

  • Hi Deidre -

    Just read Deborah's blog - all I can say is WOW !

    So glad you were able to make it.

    Mo

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