Today an electrician came and fitted a pull switch next to my bed that will open the basement door to the entrance of my apartment block. He also fitted a keysafe outside my door, this enables carers access whithout me getting up to let them in.
I have not ventured out to the supermarket for some time but today it was a nice day so I went out with my shopper. It may well be the last time I do this because it took all my determination to get there and back. My balance was all over the place but this may be due to a continuing head cold ( I am hoping ).
All love XXX
Patrick.
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Bargiepat
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Ah so glad you have a key safe and a switch to open your door . This will definitely make life a lot easier and safer for you.
Going out on your own is a bit worrying though bit it might just be a blip because of your head cold.
I wonder if there is a volunteer service in your area where you could be matched to someone that can accompany you I know you like to get out and about. Just a thought. I'd hate to think of you trapped inside. Look into Patrick because it may take a few weeks to match you to someone. Another keen photographer perhaps ?
Well done Pat in putting all these things in place! I’m so very sad though that you think today might have been the last time to the supermarket! Hugs to you x
You have done well to get the key and the switch which will open the door to your apartment block. Never heard of that before but clever?
Worried about your balance though. It may well be your cold but I remember this happened to G too and we hadn't got a DX so not a clue why it had happened! It certainly scared him!
Even when you have to resort to a wheelchair you can still get out. You can either get a car which one of the family can drive? Or alternatively get a taxi which takes wheelchairs? We had meals out until one day I looked at G and he looked so sad. He just didn't want to be out anymore as he was struggling with his food. So we didn't go out again.
It was really difficult but I couldn't bare looking at his sad face as he struggled to eat. He was very proud so I think it was just too much. Fingers crossed it is your cold lovely man.
Patrick, you are amazing. I do hope, as others have suggested, you can get someone to take you out. I know some living with PSP get to a point when they don’t want to go out but my husband never did and enjoyed every outing. With help, I’m sure you will too.
Thanks for all your support and tomorrow I will try and find someone who will give me a hand to get out walking........ Up untill a few days ago I did 10 minutes walking around an empty car park behind the flats, beautiful to smell the pine trees every day.
The more gizmos you have in place to help the better in my estimation. The loss off your freedom to roam is obviously a big issue for you Patrick, as it would be for anyone. It would be great to get a buddy to enable you to get out safely, you do seem to be fully aware of the danger, which isn't the case for lots of sufferers who go right ahead despite the danger of serious injury. That is how Ben broke his hip, tackling something he just shouldn't have attempted. Ben had a volunteer lady who came and did crosswords or read the paper to him but she wasn't allowed to take him out as she wasn't qualified to do that, risk assessment and all that. She became a good friend to both of us, such a lovely lady. I'm not sure who would be best to approach in order to get a buddy who could accompany you on outings but there must be an organisation who provide such a service. Fingers crossed Patrick, you would be great company I'm sure.
Pleased you have been able to put in place some aids to help you and the carers gain access without needing to bother you. This will be a great help going forwards
As others have suggested, I hope you can locate someone to assist you getting out.
The conditions are variable and hopefully the balance worsening is more to do with the cold. Glad you got home safely.
It is inspirational how you are determined to maintain your independence and find solutions to symptoms.
I know how you feel about getting out to the supermarket. I don’t go there hardly at all now as looking around makes me feel so ‘spaced’ out, and my legs won’t carry me around far. I do the shopping on line but it’s not like having the human interaction and quite often I forget things. We have a good neighbour scheme here, haven’t used it yet, and there is something called voluntary Norfolk, which sends befriender round for tea and chat(very lonely at home on my own) she’s not able to take me out in the car as she’s not trained but there are people with the charity that are, so maybe there’s something similar where you are. She is becoming a good friend though.
Pat you are so good to recognise your problems and to do something positive about them. Well done you.
There are befriending charities out there, some of which offer to accompany people out - I know for Mum it's so important that I get her out to feel the different air, hear the birds and as you say to smell and Autumn has such a particular scent to it.
Age UK - I think could help, Crossroads, Independent Age are others to look at. Can Social Services help - ours have a local co-ordinator who is meant to have a list of charities / activities for people, they put us onto Independent Age which have been a boon.
I do hope you find someone who can support you in maintaining this connection with the world.
Hi Patrick I'm sorry to hear you got a head cold and I hope you get rid of soon. What a great idea to have a keypad I have problems locking my door I've gone out a couple time thinking I'd locked it and hadn't which was a shock when I get back home. My daughter's boyfriend said but I could have a keypad fitted on the door so I would just have to punch the numbers in I would get into the house which is another great idea take care of yourself
Patrick, as always receive my admiration for the way you have handled your condition. Your great attitude is an excellent example to make smooth this rough path we have to go thru. My love and a big hug, Patty
Patrick we haven't exchanged posts, and I'm not sure if you currently use a walker or a wheelchair. A few months ago I forced my wife's insurance company to pay for a different kind of walker. Most walkers require the user to squeeze the levers to apply the brakes. The U-Step 2 Walker is always in break mode. To get the U-Step to move requires the user to squeeze the levers to go. This walker is highly recommended for those who have neurosurgical problems.
Since my wife got this new walker falling has stopped. A walker getting away from her no longer happens.
Currently I'm fighting with the insurance company as to who is going to pay for an attachment to the walker. There is what they call a "Cueing Module" that has a lazer, and also sound maker to fix what some call "sticky foot." Many who have PSP have problems where their brain can't tell their foot to lift up. Hence the term sticky foot.
The insurance company got her the cueing module and my wife loves it. Since getting this attachment we now have a new issue. She can now walk faster than me.
Well done Patrick , how fabulously organised - hope the new gadgets make a real difference. Hope you can find a companion to get out and about with . Could you use a mobility scooter ?? I know you have s non functioning arm but controls are pretty light if you have a companion with you they can also help spot things with you
Take care of yourself - sending lots of love Tippy xxxxx
Hi Patrick, good planning to make life that wee bit easier. Hopefully it was your head cold that hindered your shopping expedition and it clears up soon. Hoping you are able to get out and about and find a companion to accompany you. Take care, Nanny857
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