I know many of you ask me " how it is going "........ sadly life is getting harder.
I have decided to stop driving and doing this now is better than waiting for an actual incident.
Walking is a real problem and my short walk to the supermarket today took forever, not that time is an issue but balancing needs so much thought and care.
My left arm is becoming very rigid and hard to straighten which means carrying my shopping bag up the stairs is painful. I have to use my right arm/hand to hold the stair rail.
Love to all,
Patrick.
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Bargiepat
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I am sorry to hear life is becoming harder for you. I am glad you have stopped driving before anything happened. That must be very hard for you but you have done the right thing. Can you not get help with the shopping? You don't want to fall on the stairs!! Talk to your family about this Patrick. Don't be afraid to ask for help.
Hi Patrick. Im glad you have up driving so you don't get hurt. The grocery stores are more and more offering delivery. Or maybe check at the local college usually nursing classes will have people who volunteer. This helps them with some of their clinical and gets people the help and companionship they need. Also granny nanny have help like this too that is offered. My thoughts and prayers are with you. And Big hugs to you. Please becareful on them walks.
Sorry to hear. Glad you know it is time. So very many people who shouldn’t be driving for various reasons are on the road.
My heart goes out to you Pat! I’m saddened to read this. Sharing from a Psp patients point of view is sooooo important! All I can do is send you bundles of love and hugs x
You are a great fighter. Sorry to hear about your driving--kudos to you for choosing to give it up rather than waiting for something to happen, as you say.
Well, I may sound like a broken record, but you ARE an inspiration to us all! I admire you, as others do. Giving up driving is HUGE - I remember when hubby did it. It took a lot out of him.
Are there any reasonable options to a car where you are? eg slow going electric or gas scooter? and - don't laugh at me - electric trike? Seriously, I'm on the west coast of North America where all these eco-alternatives are very in. I like the electric trike myself: (though I haven't used one) big basket for goods between the two rear wheels, ability to pedal when you want or use electric motor to get you up the hills or when you tire. Are you on public transit?
I'm concerned about you living with stairs...No doubt being the intelligent man you are, you've thought ahead to alternatives if/when that is too much of a challenge.
I love your attitude "Keep on keeping on". You sound like you're doing well Patrick: I mean by that: your intelligence and drive are still intact, common sense, communication skills, ability to adapt to changing circumstances... Long may that last
Good that you recognise it's time to give up driving but hard to accept as it takes some of your independence away. Have you thought about trying to get Crossroads in that would take you shopping once a week that is if they operate in your area. Pauline x
I think stopping driving is right. Although its right to say to be cautious, Chris, with my support, continued to push himself. Another PSP sufferer, who has since died - Peter Jones from Australia - encouraged us to take risk rather than submit. Have you read his old posts ? They will make you laugh. He fell all over the place but kept going.
I just wanted to send you the hugest hug. You are such an inspiration. Love your attitude, I need to get some of that myself! We're all with you every step of the way 😊
Oh Bargiepat, I so sympathise! Likewise things have got harder these last few weeks since we came back from Corfu. I too decided against driving , but that was 6 months ago. Confidence completely went, especially as getting in and out of car very difficult. I bought a rollator to help get up the shops as my balance is all over the place, but as legs are very weak I was exhausted by the time I got home. Got up to go to loo several nights ago, overbalanced and ended up in the bath! No fun trying to get out on my own, slipped all over the place as left arm becoming even weaker now.
Oh what joy lies ahead,but think of all the memories you have made. I go to my favourite place in my head when things get tough, the diazepam helps me nod off! I do most of my grocery shopping on line now . It does mean I don’t get to see many people but as most of my generation are still working ( I’m 60) office chat does not mean much to me.
Take care, have not yet read all the posts. I am sure with your spirit you will fight on.
Cook deliveries sound good! Might give them a try as hubby works full time so doesn’t cook. Have had the luxury of eating out this week as hubby has been home. Had to cancel our 2nd holiday to Corfu as I’m not fit to travel, so have just pottered around but cooked tonight and real feel the strain. I struggle to chop veg and get things in and out of the oven. The OT came last week and has put in for a ‘perching’ stool to rest my weary legs!
I also get nervous turning in the shower so we may have to consider a wet room. Nothing like hogging the attention!
Very wise and sensible to give up driving. My wife got lost in her own home town. Turned right in front of a motor scooter. The motorcyclist was taken to hospital, our car was written off. The police came round and threatened prosecution but suggested she handed in her licence which she did immediately so they didn't prosecute. Get rid of the car and use the money you save on taxis. It's safer for you as well as other road users.
You are an amazing man, no one on this site has had more perseverance and strength.
Please keep posting, we all care about you and your refusal to allow this horrid disease to win. Not driving is a good thing, and the stairs are a a real threat. Our prayers are with you Pat.
Patrick, I'm so proud of you for recognizing that you should give up driving. It must have been hard. My husband didn't do that in time, but fortunately nobody got hurt except his pride when he fell asleep and drove his pickup into a ditch. He had mostly, but not quite, quit driving when it happened. You never really know what tomorrow will bring!
Dear lovely man, you are one brave soldier who's not to be defeated in the face of adversity. I'm pleased you recognised that it is no longer a good thing to drive, Ben was very reluctant to give up driving and I had to report him to the neurologist who advised him to stop immediately as I knew an accident was just around the corner, he was not happy with me. Do you receive PIP or other benefits, Ben was awarded PIP fairly early on, it has the Motorbility element that you can use for taxis. I know you are fiercely independent Patrick but do take care, don't end up with a broken hip like Ben , he was trying to make up the sofabed up at my son's house, a hip replacement followed by thirteen weeks in hospital.
Dear Bargiepat, You are still figuring out solutions to each challenge that comes along. That is wonderful and gives you more time to be independent. About a year ago my husband(who always drove) went out to the car and sat in the passenger seat. I asked him what the deal was and he said it’s time for you to drive and he has never driven since. I was relieved because I was getting real concerned when he drove and wondering how I could tell him not to drive. Just be careful, the disease seems to mask my husbands reasoning skills and he puts himself in dangerous situations. Prayers for you and your spirit. Nancyxxxx
I was saddened to read that life is becoming a struggle for you. Caring for mum has shown me how cruel CBD can be.
I love reading your posts You are such a fighter and have faced each new challenge with such positivity and bravery and I am sure you will continue to do so for a long time yet.
Hi Pat. You may be "losing the battle" but you haven't lost the fight. I have followed your posts for quite some time now and I have always been impressed by your determination and spirit. Like my husband (who also suffered with CBD) you are an enthusiastic photographer and I am amazed at the beautiful photographs you continue to take. Having a passion for something is so important and long may you continue doing it. I know it's important to keep mobile but shopping is pretty tough so have you thought about having it delivered and reserving your energy for nicer tasks - like photography? I am looking forward to enjoying your next photo! Be good to yourself.
Dearest Patrick - I was so sad to read your post and to hear ife is becoming more difficult for you. Sending you a big, life-affirming hug. With love, Erica xxxxx
Dearest Patrick, thank you so much for those beautiful photographs and the beautiful sound track. You were given a great gift in your photography. Not many could catch those beautiful scenes. Thank you so much for sharing them with us.
A great big hug to you. You are a very special man.
Dear Patrick that is a beautiful song. I don't remember ever hearing it before but I will never forget it now thanks to you. You touch people's hearts in a special way you know? Tears here having listened to that. Good tears though. Thank you my friend.
Sorry to hear you are having a tough time- it must be frustrating! Sounds a good plan to give up driving - always better on your terms than being forced. Could you manage a mobility scooter?? My husband used one for years it gave him back some of his independence after he stopped driving. Though supermarkets/ shops are the hardest places to use them!!
Good to hear you have nice food delivered.
Love reading your posts, your determination and courage shine through and I find them both uplifting and inspiring - thank you for sharing
You are great soldiering on. You are so right to give up driving - Ruth was frightening and thankfully gave up a year before she was diagnosed. (I looked up DVLA and I think it said that if you have PSP / CBD you have to notify them - and assumedly they then take away your licence whether you like it or not).
A static bicycle while watching TV is helping Ruth stay mobile - and yoga. But I know it is tricky with your blooming arm.
I should have maybe have looked into it more. Ruth had 9 years no claims bonus that would have been really helpful insuring one of the children's cars in her name. But in truth she was so dangerous and she knew it. Luckily we sold her Mazda MX5 sports car 4 years ago to get an old campervan. She was always dangerous in that little car!
Loved your pictures and the music. I couldn't reply yesterday because I couldn't see for the tears. As soon as your little dog appeared that was it I was mush. I remember reading that you had to find him a new home which must have been absolutely heart breaking for you. I watched again today and its absolutely beautiful . Thank you xx
Oh Wow...Didn't that video and music just make me cry? It's stunningly beautiful, Patrick! What an amazing talent you have. The little pooch overlooking the river...the stunning views over the rooftops....and that hawk again..! Thank you for the beauty.
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