I have had psoriatic arthritis for more than 20 years and have tried several biologics, DMARDS, pain management, steroids, etc, etc. I am disabled and losing more mobility every day. I have always been active and have enjoyed working in the yard, volunteering, cooking, and now, pain prevents me from walking more than 100 ft. Several doctors have told me that immobility is approaching quickly for me. Anyone else faced this? How do I prepare? I’m so sick and sad about it, I find it hard to come up with solutions.
I can totally understand how you feel @Joyfulteacher57. I’ve not faced this situation yet but did have a short while when my walking was almost non-existent so I started to go through some of my options. What helped me was warm water hydrotherapy and planning!
If movement on land is impossible can you get to a pool with a physio and get a routine together which will keep as much of you moving as possible? Things which you simply can’t do on terra firma can often be done with the bouyancy support of warm water. This is good for both mind and body.
I was damned (and still am!) if this disease was/is going to stop me doing as much as possible so I started to figure out what help/assistance devices I’d need … so I started to look in to mobility scooters, stair chair lifts, reaching devices, car modifications, wheeled stools for use in the kitchen when I cook, bathing grab rails/stools etc. As soon as I began to realise that there are ways and means I felt I had more control and less fear. A great rheumy and biologics are still keeping me mobile but in my mind, having already faced the “what if”, I know I’ll cope if things change.
I’m going to tag @Seenie because she has travelled the world by plane, train, ship and automobile with her scooter and is the best advocate for “this isn’t going to stop me” that I know.
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Thanks, Jules G for tagging me! (This is one of the things I love about our new platform.) Your admiration is appreciated, but really … I’m just doing what I can with what I’ve got.
Joy, you need to know that for a person with severe PsA, I look and feel really well. If it weren’t for my feet that are irreparably damaged, I’d be hiking around like a normal person. Unfortunately, I too am one who is severely limited by my inability to walk any significant distance. I do exercise regularly, a physiotherapist-designed aquatic routine, and that keeps my legs fairly strong.
I realized quite a while ago that I either had to find a way to accommodate this limitation, or I was staying home. Staying home is not an option, and doing so would be so not fair to the people who are important to me. My solution was a lightweight travel scooter. It has worked really well for me, and as Jules says, I’ve been everywhere. Well, not everywhere, but a lot of places. It takes a bit of problem solving, but hey … I’m sure you’ve solved tougher problems before.
Am I completely comfortable with the scooter thing? No. But I know that my range without it is extremely limited. And I’m well aware that when I stand up to walk the short distances I sometimes choose (or have) to, people must wonder. I don’t like that. But I remind myself that their reaction is their problem, not mine. Generally though, people are incredibly kind and helpful, and I do make an effort to be smiling and openly appreciative.
I wish it were different. I wish my feet weren’t wrecked. I wish my doc hadn’t messed up. OK, while I’m at it I may as well wish I were very rich and thin, with a villa on the shore in the Hawaii. but I’m not.
Preparation for the changes to come is largely a matter of getting your mind around it, and then doing it. Get the cane. Shop for mobility aids so that you know what your options are. Another idea is to find an occupational therapist: they are specialists in making adaptations for special needs. Get the OT to work with you on preparing and adapting.
And hang out with us here! We love the company.
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Wish I could get my mind wrapped around the situation in a positive way. Thank you for your insight and suggestions. My husband is mortified that I may need to ride a scooter in public. My feet, too, are wrecked. I have ankle fusions,donor bones, rotten knees, and a ruined back. And my docs remind me all of the time that it’s not going to improve. I want to go back to Europe in the fall. I’m restarting aqua therapy and looking ahead. My family will have to get over it. Thanks so much.
You are absolutely right: they are going to have to get over it. For you it is a choice between going or staying home. Simple.
Getting your head around a change of image like this is hard, no question about it. But ultimately, for me, I came to realize that staying at home was a greater change of who I was than needing assistance to travel and get out was. Staying home simply was not an option for me.
I kept thinking “well if I exercise and get strong … if I try this supplement … if the anti-inflammatory diet works …blah blah” maybe I will be able to walk. I was dreaming, darling. And the day I decided that I’d better get myself a scooter (and of course I could sell it if I got better later! LOL) a great weight was lifted off my shoulders. Finding the right scooter to suit your lifestyle, though, is critical. But that’s a whole other discussion which we can have here or we can PM about. Up to you!
There are a few of us here who use mobility aids, but most of “us” have either managed to nip the disease in the bud or have had intervention that keeps us mobile, if somewhat restricted. Damaged feet are the nemesis. How I wish that I had been less accepting of my doctors’ shrugs when I complained of pain.
Europe you say? 
Do tell. I’m off to Amsterdam with a friend at Easter. We are doing six very active days of flower fields, a concert, museums, galleries and Indonesian food, none of which I could possibly do on my feet. Added to that, next week I’m having Moh’s surgery to remove some skin cancer from my nose. (I know, it rhymes: Moh’s on my nose.) I asked my friend how she felt about touring with a bride of Frankenstein on a bike. She laughed and said I was silly. Right. We will see who is laughing when the time comes! 
LOL
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Last time I had counselling, about the only thing that I came away with that was positive was the idea of getting used to the “new normal.” Don’t fight it, accept it, do what you have to do to cope with it. I found that useful - even down to silly things like buying a coat with a hood because I couldn’t hold an umbrella and shopping bags in one hand and a walking stick in the other!
But I am now getting cabin fever. I want to go OUT. And I don’t mean to the local theatre or the pub. I want to get out of my home city. I have booked myself up for a conference in June which is about three hours away. I have no idea how I’m going to negotiate the train journey! And I want to see one of my favourite singers in London in September. He’s just announced some dates there, and he’s 78, so he isn’t going to keep singing forever. But how the hell do I negotiate the tube network or the bus network in London? I can only walk about 100 metres without stopping. And the chance of getting a scooter on a London bus is as likely as getting me to a Donald Trump rally. It just ain’t going to happen. So, to those that visit foreign cities etc, how do you manage? How do you negotiate everything?
Every bus in London has wheel chair accesability (ie lift) so your scooter should be no problem. Aslo you might want to check out this site which has tons of “hacks” for visiting london with mobility issues. Have a great trip and give us a full report!!!
Thanks, will take a look!
London buses, as tnt says, are ALL accessible, and the drivers are very accommodating. The tube is as accessible as an old system can be (which is not very, in central London). There’s an accessibility map on Tube website, and a number to call for further information.
Theatre venue accessibility is variable, but they make a fabulous effort to help as much as they can. We went to a concert at the Albert Hall, and the help there was brilliant! And (get this!) the person who comes to “help” you gets a free carers ticket.
As for trains, call the train company and let them know. Some of the UK companies are very cooperative, and will simply welcome you when you show up unannounced. Others (FGW) want you to apply for a special pass to confirm that the size of your scooter will fit into their trains.
There is nothing, absolutely nothing, that cannot be solved with some advance planning. Just do it, and enjoy it!
Thank you. I don’t have my own scooter - I can’t get one in the flat - and so would have to hire one when I got to London. That said, I have just looked at the price of taxis for when I got there, and actually they’re much cheaper than I might have expected. The show is on at the Albert Hall and tickets go on sale on Friday. I think I might get a ticket, book a fully-refundable travellodge room, and then if I can’t go the most I’ve lost is the price of the show ticket. Hopefully the conference in Canterbury will give me a bit of confidence. I’m going to ask/tell them that I will only attend part as I get tired very easily, but getting there and giving a paper at all will be an achievement!
We were in London last spring and found accessibility with my rollator to be fine. It is a hassle getting on and off buses but everyone was very kind and accommodating. I found using the Tube to be frightful. Some Tube stops are NOT accessible like Picadilly Station where others like Green Park are. And the trip from Heathrow could only be handled by taxi or prearranged transportation. There’s no way I could manage my limits with a rollator and carry along luggage and a personal bag. Our hotel was in Mayfair - a perfect location - with a taxi to our hotel costing $105 USD! The 5 days we were in London, we spent more than $500 on taxis. I did realize something while traveling, however; I thought I was fearful of what friends, family and acquaintances would think if they saw me using mobility aids. I was just as embarrassed for folks on another continent to see me using the rollator too! So, truly, the problem I have is an image problem. “Baby steps.”
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Hi darinfan. Despite living quite close to London I know nothing about travelling with a scooter etc., mainly 'cos I don’t use one. But also because my approach to travelling is basically to dive in and hope for the best.
I’m going through a period of reappraisal. A lot of my so called strategies for coping with this disease seem to be past their sell-by date. One of the things I’m thinking about is forward planning, more is required. A lot more. I am sure that if you plan ahead both trips will work out just fine. And then there’s the sense of achievement …
If I can help with the trip with Canterbury let me know as I’m on route. I’d happily meet you from the train or join it if that would be any use, even if you just want the reassurance (irritation?) of a travelling companion for part of the way. (Canterbury’s quite good for shopping you see!)
Joyfulteacher, this is a relevant discussion as you can see by the response,so many of us are realizing PsA is taking its toll on our bodies and we’re losing mobility. I’m sure you’ve had a lot of anxiety about losing mobility FAST…that is scary. The comments by those who’ve had to resort to scooters, etc., are helpful–especially because they’ve dealt with the humbling experience of having to use mobility aids. I never like to stand out in a crowd–just want to blend in. IDK how long my feet will be able to get me around without some sort of help. Like Seenie, I think there will come a day when I need the scooter. I dread it and I’m fighting it!
My sister-in-law had a stroke when she was 28, she had 3 young children at the time–one, a two-month old baby. A few years later, she gave birth to their fourth child!!! I look to her also for strength and perseverance. She’s 67 now. Did a phenomenal job as a mom and housewife struggling along with no use of her left side. I guess if she was able to manage life for all those years as well as she did, I need to suck it up and take on whatever challenge PsA deals me. It can be depressing, though, and I want to thank everyone here for their willlngness to support and encourage those of us who are not dealing as well with our limitations.
Thank you, Grandma J. I am very grateful for the sincere and knowledgeable responses here to my comment. I, too, like to be invisible in public. And it’s pretty tough when you are riding on a George Jetson method of transportation to fly under the radar. While feet and a knee present a real problem to my walking, my back gives me unbearable pain after a short distance of walking. I MUST more toward assistance sooner rather than later. I truly mourn for my life before the destruction of PsA. I loved being physically active and was raised with the belief that work ethic was listed right under Godliness and cleanliness. Illness was also viewed as a sign of weakness so even when two of my immediate family members had cancer, I was forbidden to discuss it with anyone. Being able to seek support would have meant so much when my father passed away from a brain tumor when I was a teenager but I wasn’t allowed to admit his illness. My 83 year old mother still insists that if I would push on, the additional effort would “loosen” up my joints and I could be fine. The implication is that laziness is the real problem. I only share all of the unbelievable info because I’m positive that my experience feeds into my fear of caving to mobility help.
Joyfulteacher, my mum is the opposite. She panics every time I try to do something! But she’s like yours with regards to my bipolar (“you need to pull yourself out of it…”) but she means well.
Hey Sybil, thank you so much for the offer. I’m travelling with Mum to Canterbury, all being well, so hopefully should be OK (blind leading the blind!). Apparently there is a change at Stratford London and Stratford International, but having spoken to them, it’s only a five minute journey by train, or a five minute trip in a taxi, so hopefully that will be ok. Or so they say! My answer to everything is taxis! I am assuming there is somewhere in Canterbury where I could hire a scooter for the day that I have free, so that I can get around the shopping area? Would you happen to know about that? I’ve just booked the ticket for the Albert Hall too. I must be bonkers!
Hopefully my experiences will be better than my one earlier in the week when I went in a CD shop with my scooter and misjudged a bend at the end of an aisle and managed to knock a display of CDs on the floor! That wasn’t my best moment, but I have to say they were very pleasant all things considered!
Oh my gosh, Joyfulteacher! I’m so sorry you had to “stuff” your emotions and deal with your sadness alone…I’m sure that didn’t help in your fight with PsA!
Oh yeah, a good work ethic–which is great–but sometimes other things take precedence and it doesn’t sound like that was acceptable in your family…I also was taught that “hard work never hurt anybody”, and “if you’re going to do a job, do it well” so I practice what I was taught but I know (I think I do anyway) my limitations and my 92-year old mom does watch over me and constantly cautions me about “overdoing it”. She and my dad, however, were work-aholics and she was in so much better shape at 63 (probably even at 83) than I am, so I’m envious and it just doesn’t seem fair! Her feet at 92 are unreal–except for a couple crotchety toes–she never has a problem with edema or anything!
Seenie mentioned about the people who give you “that look” when you get off your scooter to grab something off the shelf–I would feel like I constantly had to give an explanation to everyone sneering at me and, of course, NOBODY has any knowledge of PsA. If I’d just say “arthritis” they’d look at me like, huh??? I wish I wasn’t so self-conscious and worried about what others think!
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Well, the pictures don’t do it justice so won’t bother, as it looks mostly normal. but I have absolutley the coolest Rollator ever thanks to my son who runs an auto body shop and truck customization.shop. I really think he should start a web store for these things. I have headlights, dual cup holders, a shopping basket. He installed a wifi hot spot and blue tooth that recharges from the wheels. I have three sets of wheels regular, studded snow tires and even a set for all terain. (thanks to Harbor freight stores) He is adding a fishing rod holder as its about fishing season here. It even has a clamp for an umbrella! I especially like the wifi as I always have Miles Davis tunes and netflix for those long lines (ques) not to mention Google maps navigation - the walking version. I can even keep up on the latest with Bens Friends. (he used a one of those golf cart score card holders to attach my tab.) The If I ever become homeless I have home on wheels. the bag ladies will be falling all over me.
Far from an inconvenience I am the envy of the whole mall walkers group. (we have a group who meets in our local shopping mall to walk every morning. It has little sub groups of arthritis, heart, stroke etc patients)
We are working on a trailer now for Back Packing alternatives (stove, cooler, food sleeping bag and a tent… I’ll have the only Rollator RV in the wilderness this summer.
Lemons into lemonade is my mantra… Self conscious? Not at all I KNOW there are folks who wish they could have one too!
But then there is always the motobag option: https://www.youtube.com/watch?v=HazWCa3huMY where its all done for you. (not sure if the Indiegogo crowdfunding campaign is still on)
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All I can say is WOW cool wheels!!!
darinfan I’ll look up Canterbury re. scooters and get back to you. I might need to know myself some time.
Actually I did hire a scooter for a while before PsA, after foot surgery. Needed to cross the road but there was no drop down kerb. So I got off and somehow manhandled the thing off the pavement whereupon I realised there was a fair bit of traffic. So threw myself on it, squeezed the accelerator, shot across the road, up a drop down bit and straight into somebody’s immaculate topiary hedge. It may have been a chicken, beforehand anyway. I can assure you you can get away from the scene of a crime sharpish on a scooter.
It’s looking hopeful:
There’s just no answer to others’ assumptions, prejudices or whatever. Or indeed to our own ingrained hang-ups 'cos we’ve all got them. It’s a case of ‘excuse me world, I’m trying to have a life here and you can all get £$%^*ed’. I swear that, like policemen, mobility aid users are getting younger (and more glamorous).
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