Regarding comments on assisted travel above.
Travel by rail for wheelchair users has come on leaps and bounds in recent years.
The phone lines of train companies are well used to booking the spaces, and booking assistance at each end. Ramps appear at both ends. On train staff now ask for luggage to be moved to clear room for wheelchairs.
On Eurostar the accessible seats are in first class - so you get a free upgrade.
Regarding hotels - always, always, always check that you have an accessible room direct with the hotel. Use a booking site by all means, but you MUST phone the hotel.
Even if you dont need a wet room you will have some more space anyway.
Re hotels, two bad experiences:
Hotel in Bournemouth. āOh yes we do have disabled accessible rooms. But there are ten steps into the hotelā
Country hotel in Scotland. I booked on booking.com Thank goodness I checked by phone the day before. āOur only accessible rooms are in fact lodges in the grounds which cost $$$ moreā I cancelled, and they only gave me a partial refund.
@BearNumberOne with assisted travel on trains there is a slow and steady roll out of turn up and go, the downsize is that if you donāt turn early (say at least 30 minutes before train) the staff may not be able to help as quick as they would like. For a longer journey I still book in advance.
Hello @. I donāt have PD My wife has ! I do most things around the house , my wife can not go out on her own for safety reasons ! I donāt go out of the house again for her safety .
Carers .. not to sure where you are on this world but unfortunately. If. your in the UK and you have worked hard Paid your taxes and you have a nice little nest egg ( saving money ). Over 23 k. Your self funding ā¦. You have to pay for carers
Maybe widening the discussion too much. As said I live with someone with MS,
I have read and also recognize in myself that you become convinced that the only person who is capable of caring for your loved one, the only one who knows what he/she needs is you.
This leads to you being ātrappedā at home (that is not the right word).
You do need to get away from a disabled person even if it is for a social evening or a hobby.
Hello , the discussion is ok , I can understand what you mean . Itās a disability .
And yes me and my wife believe that we are the only people to understand our needs , a carer would be no good to us ( have to watch what I say got a red flag ! ) as the time my wife needs that care , the carer would not be in the house = 24 hours care , but we donāt need 24 hours . The time she needs care is when she walks in doorways or her medication is not working . Big problem with that at the moment. And that leads to the other problem our local PD donāt seem to want to help. I think they have got to a point that they donāt know what medication will work and getting fed up with me keeping asking questions. Sort that out = no carers
My self .. I not a person that goes out anyway I stay in the garden or in the house I donāt feel trapped at all , donāt like crowds If I needed too I could open my back gate go into the farmers field and fly my kites , I have enough to keep me busy.
Not to sure if my wife would be there when I got back , thatās part of the problem now I have to lock the doors and back gate , not to sure if itās progress or medication. , possible red flag for saying locking my wife in the house ā¦. ! She not a prisoner.. itās for her safety.. Im in the house as well !
We have also noticed that all of her ā friendsā have now disappearedā¦. It seams to much bother to phone ..
Hello , @JennyPUKMODTEAM25@BearNumberOne@louisowen2608@KareClifford it was not intended to offend , i was just trying to put things in prospective. Me and you have to work hard to get what we want we save hard , at the end of it all most of us hard working folk may end up with savings over 23,500 and maybe a house .. and all this has to pay for our care or care home.
You have to pay the council a fee Ā£500.00 just to see what care you can have .
My point = Someone on means tested benefits .. will get some of that free .. house , care, care home , dentist , council tax. Etc . This could be people in the UK or others that get here in or on some sort of transport .
I meant no offence just say something that is true .
Thank you for sharing your concerns @Polomint, we understand caring for someone with Parkinsonās comes with challenges and want to make sure you and your wife get the support you need.
We have some information on our website around getting support and benefits you might be entitled to, which you may find helpful, Getting support as a carer | Parkinson's UK
Weād also encourage you to reach out to our Helpline, a free and confidential service, providing support to anyone affected by Parkinsonās. Our trained advisers, can provide information and advice about all aspects of living with Parkinsonās. You can phone: 0808 800 0303 and the line is open 9am-6pm Monday to Friday and 10am-1pm on a Saturday.
Hello @JennyPUKMODTEAM25@BearNumberOne thank you. Been through the benefits process. Got all we need to live on were not greedy , after 20 years .. I know what is available and where to get advice.
I have had carers UK in touch after an indecent , they keep in touch once a year , Iām not interested , have social services come around .. wife not interested.. we manage.
Doctor told me I need carer training ā¦nothing came from that . . !
Doctor told me I was making my wife delusional !
Doctor told me I was given my wife olfactory hallucinations !
Local PD team removed all my wifeās medication , they were happy for her to be asleep unable to walk all day this went on for 3 months .. they were not interested, consultant told me to stop phoning him .. this is when I needed help . So do you think Iām going to ask for advice , Iām the one that sorted it out. Against what they said .. I reinstated the medication ā¦. Sheās as well as possible thanks not to them .
Do you think Iām going to ask for help when everyone seams to point the blame on me .
That sounds really tough, and weāre sorry to hear that things have felt so frustrating. It sounds like your wife is doing well now and has a fantastic advocate with you by her side, but please do know that you can always contact us at Parkinsonās UK if you ever need any support, advice, or a listening ear
Hello, @JennyPUKMODTEAM25 I do appreciate what you say .. yes is it tuff .. and that seems to be what we get from doctors .. maybe one day I will contact you again.. but unfortunately I have been bitten to many times , put into positions sorry forced in to positions that we have had to fight our way out of , we changed consultant after that as we found out he had done the same thing to someone else , the other guy was not so lucky .. went for a swim. Never come home !
That was nearly me ā¦..
Thatās how much harm can be made by not helping or blaming the wrong person.
Donāt start me on mental health department. ā¦. Or dementia theres another story of how not to use the ACE III test = wrong diagnosis and then you have to fight to get it removed from your records..
