DO IT NOW!

My wife has PSP. She always wanted to take a river cruise in France. We did that three years ago when balance was her only problem with PSP early stages. I urge you, if you are in the early stages go and do everything you want to do. A time will come when mobility WILL restrict what is possible. Plan and think ahead. Do those exciting and fun things while you can. They will make great memories. Remember, if PSP is advancing slowly at the moment it could just as well advance quickly at any time. After all, it is unpredictable. Jimbo

21 Replies

oldestnewest
  • Oh Jimbo, I agree with everything you said. Three years ago we went on a Norwegian cruise, had a balloon ride (a bit dodgy with balance problems but we did it) and visited local attractions with restricted access. Now Colin can't stand alone for a second, can't walk with his walker unless I'm holding him upright, has all meals liquidized and drinks thickened, has a job to clear his throat so coughs loudly ( sounding like a deer in rutting season) and groans almost constantly. Someone who last saw him New Years Eve came yesterday and cried as he has changed so much, so quickly after 3 years of gentle decline. So as you said Jimbo, do it NOW, tomorrow may be too late.

    Best wishes Nanna B

  • Hi jimbo

    How true. Never do tomorrow what you can do today! We did a lot of travelling until it became impossible. I wish we had done all the things we postponed when younger, saying we would do them later or when we retire and had all the time in the world! If only we knew ...

  • Excellent advice! Some of the best things my sister and I did were to do a surprise 75th birthday party, a trip to see Mama Mia at the theatre in London and take her out several times a week when she was well enough. She loved it and it always gave her some goal to aim for. Xx

  • Well said Jimbo, we managed a week in Cyprus last year and found Bristol Airport and Easyjet so helpful (sure other airports and companies are too)Later in the year I drove us to France and we had a cottage for a week my husband has become a very messy eater but still manages so we brought back good foody memories from both holidays.

  • Thanks Jim I don't know even if I have PSP but maybe a type of it. I had a fall last Monday - going to a taxi my wheeler got faster toward the taxi that was at the bottom of our drive most taxi come up the drive but I foolishly tried to go down to it & nearly crashed into it! My Knees are sore especially the reconstructed one. My niece came & gave me some Bowen therapy that helped. I'd love to do a river cruise but my husband is not keen also we have an aged dog 18 this year & she is ok with us but would not be with others. We did 2 trip last year as house swops but my husband has found these too demanding - he's 85 years old now & I hope it survives me. May be we'll think of something after it cools down here - still heat wave conditions - days with over 30 C. Cheers Marytea

  • So So right. I salute you both x

  • I do so agree. My husband and I went to Australia and New Zealand in the early stages, one just can't imagine at the start that one won't be able to all one wants for ever!!!

    GO DO.

  • Very wise words Jimbo! So so glad I did all the things I did with dad when I could. Very precious memories, and seeing his face light up was priceless! X

  • hi jimbo we also done a cruise around australia three years ago ,it was so much fun,although he had a few falls.it was sad because I think people thought he was drunk ,and of course he wasn`t and the long passage ways were hard for him ,but we long past that now .he just sits and listens to the cricket as he eyes are closed mostly all of the time all good things must come to an end sadly, cheeio , christine

  • I agree. My husband loves cruising and we went last April. Now, although he'd like to go again I don't think I could manage it as he is very much less mobile. If things settle down here then I will try to take him away in England. Best wishes to everyone.

  • Jimbo, you are right as always! One good trip is one I have mentioned before is going to South Africa. Driving is very easy and all the national parks allow self drive, so you can see all the is to see, ( I.e. Elephants strolling inches from you,) from the comfort of your own car. My husband and I have spent many trips in Southern Africa, so now we are restricted, it was lovely just doing things that we use to do, without any problems. PSP, vanished for a few wonderful hours. Felt like grown-ups again!!! All the main parks have good accommodation for disabled people and the prices are reasonable too!

    Flying for anybody with mobility challenges is relatively easy, if you ask for wheel chair assistance. S was spoilt something rotten and was made to feel special, so gave me the confidence to do it again. We do have a house in South Africa, which we bought before pSP reared it's ugly head, so that does make things slightly easier. Also, our local doctor over there, has even had a patient who had PSP, so medically things feel safe.

    We are all booked to go back in a couple of weeks. Can't wait for a bit of sun and get away from this awful rain in South west England!

    Please everyone, listen to Jimbo, get on the computer and book now. You WILL feel better, just having something to look forward to does wonders!

    One negative, anybody remember what hot food tastes like?

    Heady

  • Well said, Jimbo -

    My favourite photo of Tony is of us both, looking happy, on a day outing with the local Parkinson's Group, on a boat trip from Huntingdon. The boat specially adapted to take people with impaired mobility.

    Mo

  • Oh, yes. We made it to Ireland in the fall, as he had wanted to do. It was lovely, but very nearly too late, as his walking is so limited now. Wise words, jimbo, as always.

  • Do it now!!! Enjoy!

  • Yes I agree do every think you can as my dad was diagnosed in jan after being told years ago he had Parkinson's from being diagnosed in jan he passed away in December cruel illness

  • Bonjour Jimbo...and all you heroes on the forum that replied.

    Your super DO IT NOW! posting sure got the 'thumbs up' from all our readers.

    As well it should. And reading all those happy memorable times spent on vacations with loved ones at the PSP early stage proved your point.

    Some of you may recall our own story of a Mediterranean cruise at the outset of her PSP. Where my bride boarded complete with black eye and broken nose from a bad fall the previous day.

    The cruise staff were so kind they insisted on taking her up the boarding ramp in a wheelchair even though she could still walk pretty well leaning on my arm. Shape of things to come we were oblivious to.

    But once aboard ,walking around, the looks we got were a mixture of 'you brute,wifebeater' at me and 'poor beaten up woman' for Jo!

    Other looks said...'and well he might offer the poor gal a cruise to be forgiven for that work over she got'!

    The 'punch line' (sorry for this teminology) to the story was the Ships' Medical Officer-- who Jo went to see to re-dress the stitches in her brow-- who right out asked her husband done the deed. Jo said emphatically NO !

    But the Doc,not convinced, insisted that if hubby became violent , she could call the ship's Security Officer and gave the number to call!!

    Jimbo, the moral is ,we did it upfront ...and had a wonderful peultimate cruise.

    With you all in mind,

    best brian.

  • Great story Brian. Thanks. Jimbo

  • Well they say 'Laughter is the Best Medicine', Jimbo, and I honestly think that if we can all keep our sense of humour when all about us are losing theirs , it'll help ease the pain.

    One final piece of info as a lot of us have been talking cruising...and I only found this out ,too late, when on the last cruise with my wife by then confined to her wheel-chair. That is, all Cruise Liners have special cabins for

    reduced mobility cases. Wide cabin doors ,better toilet facilities and room to swing a cat. And a bunk bed for the old carer!

    On this trip I took along two of our daughters--nurses---to look after Mom. And as I said we didn't have one of those special cabins,so we'd all take Mom to the roomy 'special toilets' easily accessible by wheelchair, lock the door and look after her there! With room and ease!

    So remember when booking anything anywhere claim your rights to special treatment. Its the least holiday purveyors can offer in return for your custom!

    Don't leave it too late.....BOOK NOW! Jimbo dixit!!

    best brian

  • I so agree as well. Ironically we had no clue that my dad was in the beginning stages of this horrible illness. Looking back I think he knew something wasn't right with him. He developed this sudden urge to travel and we did. Between 2005-2010 we took many family trips including two wonderful cruises. After 2010 things pretty much have gone down hill.

    I don't want to sound selfish but I still feel so cheated. This disease has robbed me from my dad. Has robbed my parents from enjoying their elderly years together. It just a tough situation all around.

    So yes enjoy outside activities, conversations and even something as simple as a smile. My other recommendation is to get any necessary paper work done in advance. Anything dealing with health care proxies, last wishes, testament. You want to make sure that all of this taken care of before communication becomes much more difficult.

    My thoughts and prayers to all of you who are dealing with this and all of you who have dealt with this.

    Love and respect,

    Jess (bx,ny)

  • Jess Yes things can change quickly, level out, only to change again. It's never a good change either. Hang in there. Sending you hugs. Jimbo

  • Yes....GO, DO! My partner and I took some trips...although not the longer ones he wanted to take. You never know with PSP when things will change drastically -- because of infections and so on. Best to do everything you can now!

You may also like...