I'm feeling a little depressed i'm considering a wheel chair or a scooter it's not easy to get around at this point and have to accept the next chapter in my life i'm only fifty seven. I have to come to reality. does any one have any experience with this its hard to walk far. I can walk short distance. How will people accept me,will my freinds still be their for me. I think its good to talk about it not sure if i was to go to blogs or discussion. I've been on embral and started humira im not sure about that. Has anyone tried hypnotherapy they said that helps with pain.. I feel like my arthiritis attacked me and destroyed my joints.
I'm right here with you. I'm only 59. I want to take long walks. But can't even walk around my block
It's hard to wrap your mind around a change like that. But we have some members on the site who have used scooters and/or wheelchairs, either temporarily or long term. If it allows you to do the things that you want to do, it will be very worth it.
My feet have been painful, and I thought a pair of crutches would help, but my foot doctor told me today that I don't need crutches. He went over my x-rays with me and showed me how some of the joints on the tops of my feet are bone on bone--the cartilage has eroded away from arthritis. He advised me to get really good "stiff soled" running shoes--he mentioned the New Balance brand. He told me surgery to fuse the joints is an option if they would get so extremely painful, but he does not push surgery. He said there are risks and the surgery doesn't always help. His final advice was to get better shoes and use ice and ibuprofen.
It is hard to walk far. My limit is about ten minutes (it used to be five before physiotherapy and my “special” shoes). I use a mobility scooter so that I can do things the that I love: going for “walks”, tourism, museum visits etc. I shop a lot at WalMart because they are the only supermarket in our town with scooters. Man, I hate having to use it, but it lets me be independent rather than needing to ask DH to go.
Do I like using a scooter? Nope, not at all. Does it help me get out of the house and feeling like a normal person? Yup. So I use it. This damned disease has given me enough pain and misery, and I am not going tto let it turn me into a shut-in if I can help it.
Painful feet are one of those things that don't get better with exercise, and I'm thinking eventually I'll need a scooter or crutches or whatever to give my feet some relief. I also can't walk more than a few minutes and the more I'm on my feet throughout the day, the more they hurt by the end of the day. The doctor I saw today had a weird attitude. He didn't seem to be at all concerned, even though he also pointed out the whiter areas on the ends of some of my bones and said that indicates inflammation where the cartilage is missing.
Seenie said:
It is hard to walk far. My limit is about ten minutes (it used to be five before physiotherapy and my "special" shoes). I use a mobility scooter so that I can do things the that I love: going for "walks", tourism, museum visits etc. I shop a lot at WalMart because they are the only supermarket in our town with scooters. Man, I hate having to use it, but it lets me be independent rather than needing to ask DH to go.
Do I like using a scooter? Nope, not at all. Does it help me get out of the house and feeling like a normal person? Yup. So I use it. This damned disease has given me enough pain and misery, and I am not going tto let it turn me into a shut-in if I can help it.
Seenie, thank you!!! I just took my family downtown to meet my brother for dinner. We walked several blocks. I thought that wirh a good dose of denile and “I can do this”…well, that I would be a le to do it. Instead I embarassed me and them and ended in tears. The only thing I kept thinking was “if I am going to continue going and doing, it will not be on my feet.” My hands, wrists, and elbows cant opperate a wheel chair. Did you tell your doctor that you needed a mobility device? I keep saying this but my docs don’t really seem to ‘get it’. Even the flattest xray showed swelling on every ligament and tendon with tarsal nodules and bone spurs. Current Remicade treatments are NOT helping. I feel desperate, scared, and helpless. These are not feelings I like but I just don’t know what to do next? Dontou think an orthopedic doctor could help? Thank you!
Hi DonnaB, you asked about hydrotherapy. Yes, it definitely helps! I was unsure to begin with and a little frightened it would make my sore joints worse but it didn't and I was soon feeling the benefit. The warm water is very comforting and with the guidance of a physiotherapist I regained strength and range of movement around my worst joints. I'd never have believed what a difference doing gentle standing push-ups against the side of the pool could make to my shoulders or the range of movement I'd regain doing gentle squats holding a partially inflated water-wing behind my back :)
In my sessions we use things like water-wings/arm bands (not sure what you call them in the US), foam tubes, foam blocks, water-fins/flippers even plastic bottles half filled with water to provide a gentle resistance whilst doing the exercises. I've bought a few pieces for myself so I can now go to the pool and exercise on my own. Seenie is also a 'water-baby' so ask her about it as well.
My ability to walk any distance/stand any length of time has also dramatically decreased to the point I can't do the things I want to do either. Only last weekend I faced another reminder of this - whilst I was sitting in a coffee shop trying to rest enough to finish what I had gone out for (it didn't work!) - I saw three people, one in a wheechair and two on scooters and realised this is what I would need to have the freedom to do many of the things that I want to be able to do. On the one hand this is a depressing realisation but on the other what is the alternative except to become housebound? If the only way I can live as close to a normal life as possible, and stick two fingers up to PsA, is to use a mobility device when I need to then 'bring it on'. This is a tough enough fight without making it even harder for ourselves.
Lyndsey, like you, I don't think I'll be able to wheel myself in a chair because of my shoulders. Crutches and canes are of limited use to me for the same reason. And really I need to be off my feet. I'm going for a second opinion in a couple of weeks and plan to mention this to the rheumy I'm seeing for her views but I reckon the first step to getting mobility assistance is to see/ask for a referral to an occupational therapist. I'll report back with anything I find out.
I completely get it, DonnaB! I was 36 the first time I landed in a wheelchair. It was difficult to wrap my mind around, but my quality of life was vastly improved when I could conserve my energy/legs using the chair. I could do so much more, it was amazing! I still had the pain, but even that was less because I wasn't on my feet all day long.
One important lesson I have learned from this disease is that true friends stick with you through it all, and the rest you don't need to dedicate your time or energy to. I had a couple friends who simply didn't know what to do or say but would talk to me and learn more and became comfortable with seeing me at my worst. Others didn't bat an eyelash, or thanked me for finally taking care of myself. :)
This is a difficult part of the journey with PsA, but you'll get through it. I'm hoping you find treatment that works for you soon - when I found the right one, my wheelchair, crutches and canes got relegated to a closet and my hiking boots got more wear.
Just getting back here, Lyndsey, to respond to your comments about mobility devices. Yes, my doctor supported my decision to get a device. My worst and most painful damage is in my feet. With your doc’s approval, you can perhaps get insurance to pick up part of the tab for the device. If you are not able to walk as far as you need to or want to, in my book that’s the reason to consider getting wheels.
As for an orthopedic doc, I don’t know. My feeling is that they are the folks to see if you have a really badly worn joint. But swollen ligaments … doubt that they could offer anything more than sympathy, and orthopods are not known for their warm fuzzies. LOL
Hey Donna B, you’ve had eight people respond to your post. How about letting us know how you are doing?