Hi 2 years ago my husband was diagnosed with primary progressive aphasia and this week the Neurologist now thinks it's PSP his speech is practically non existent he can't write or type, his balance is terrible falls backwards all the time . Uses walking stick and now someone has to walk beside him . His swallow is good for now and his appetite but gets infection after infection this week he is on his 4th week in 4 antibiotics he now has UTI and broken ribs from falling . I reckon he has had this 5 years at least but it was his speech that it started with .he is 75
I'm not sure at what stage we are at .any info much appreciated.we had booked a cruise for November but I'm thinking it has to be cancelled it's rapid .
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Pepper0
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Hi Pepper0, the progression of PSP varies with each individual making it difficult to assess where a your husband is on the timeline. With UTIs and falls already and the sudden impulses in movement with PSP, a cruise would pose considerable problems if you are the sole carer. If you are in the UK contact the PSP Association's Helpline (pspassociation.org.uk) if in the USA contact CurePSP's Hopeline (psp.org)
Hi Pepper0So sorry to hear that your husband has PSP, though hopefully the diagnosis helps explain the complex symptoms and the progression of mobility issues.
Predicting the progression is difficult, but if you think your husband has had this for 5 years and he's still walking - with a stick and someone guarding against falls - then thing are going relatively well. The infections are a worry and could cause rapid deterioration.
I think you are right thinking that a cruise -however much you've both been looking forward to it - might be problematic and you should notify your insurance company if you are thinking of going.
I would suggest, if possible, that you and your husband take a nice holiday but stay on land and with step free access. I would also suggest you get a light weight wheelchair and bring it - just in case. Perhaps there is a family member, friend or companion who could go with you?
As David750 suggests, talk to the PSPA, they are always a great support - and if you haven't yet considered outside care, perhaps introduce the idea gently, you will need it.
Your husband seems at a very similar stage as my own although he was diagnosed 4 years ago initially through apathy which we had attributed to the passing of his Mother and substituting words with “what’s a name” when he could not think of the word he was looking for.
I have just cancelled a cruise myself as he was admitted last minute into hospital with chronic constipation.
Having said that it won’t deter me in trying again. The cruise line had a fully adaptable cabin for us which would facilitate our wheelchair and wet room bathroom with grab rails and shower seat. I purchased a fold up walking frame which the airline said we could take up to 2 mobility aids and a medical bag free of charge. I booked assistance all the way through end to end via the airline and my husband would not be able to walk to his seat but they have aisle chairs available to push the passenger. Obviously it is imperative to have medical travel insurance which for PSP sufferers is not cheap but my view is that you have to try and make the most of life and not let this disease hold you back from making memories with your loved one. There are medical centres onboard the ships and I feel they would be more helpful than if were based solely in a hotel.
Hi, sorry to hear about your husband. If you do go ahead with the cruise, May I suggest you take a copy of the PSPA booklet for GPs to give to their MO. Contact the PSPA helpline by phone or email to request a copy.
Hi Pepper, this disease is a bugger aint it? I was diag PSP 6 yrs ago age 82, male, and happy to be a slow developer, just about to walk up road with rollator to nearest coffee 100yd, for morning social!
I have made 7 pages of experience, meds, exercises,and bits of advice. May be too late for you two, but happy to email you if you'll give me ur personal email address. V. best wishes, TimbowPSP
Pepper0Hi. Sorry to learn of your husband's PSP condition. The diagnosis of PSP is not a complicated process if the neurologist has full knowledge of his subject. I fully agree that you are thinking of cancelling the November cruise as this is quite disturbing to see that common sense is not uncommon these days. With his ribs already broken and current UTI infection he is afflicted with besides other problems, this is the right decision you are thinking of taking. Please don't worry and try to live in the moment while taking full care of your husband. Best wishes to you and your husband.
So sorry to hear about the progression of the disease. The key is to stay one step ahead i.e. to make sure there are no more falls etc. Ruth and I had some lovely holidays when she was in the condition your husband is in now. She was happy to go in a wheelchair even though she could still walk (unsteadily) a little, which meant there was no risk of falls. So I would hope you could still go on the cruise. Have fun while you still can......
I agree with Bergenser. Treat the infection and choose a warm destination, a hotel well prepared to care for and clean a patient with physical limitations and a good hospital nearby. Provide yourself with help, generously so that they can help you during the transfer and stay. Notify the airline, they have a lot of experience and there are help teams at the airports for passengers with limitations. It is about making the stay pleasant for the patient and caregivers.
My experience is having spent months in southern Europe with my wife in a wheelchair and I have excellent memories.
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