Access and Mobility

Filed Under Challenges | 12 Comments

Restricted mobility can become a real issue for people trying to live with arthritis. By mobility I mean when your illness impacts on the lower half of your body, affecting tasks like walking, sitting/standing and balance. You may not be able to walk distances or for long periods and stairs can become a real challenge. Even the type of seating may affect you going to certain places.

Isolation can become a big problem for those with restricted mobility. And it can stop a person getting out and about to do everyday tasks or just enjoy yourself. It is worthwhile being aware that isolation can lead to depression. Especially young people don’t like being a burden to others. Their life is no longer their own. Life has to be planned and it is very hard to be spontaneous. It can also lead to problems with self-esteem and self-worth.

Joint pain coupled with access and mobility issues in some people can lead to one questioning life. Dealing with everything might just be too much for some people to bare, especially if the arthritis or pain isn’t well controlled.

Restricted access to public transport, housing, shopping centres etc can be very frustrating and upsetting for many people.

For example:

  • Not being able to get on the bus because it has steps. This applies to all public transport and taxis.
  • Not being able to visit friends because their houses have stairs, etc.
  • Not being able to access shops because of steps, narrow aisles, stock cluttering the aisle, no raised or comfortable seating (cafes restaurants) etc.
  • Losing ones independence.

We as consumers need to make the community aware of our needs. Everyone, regardless of age, ability or disability have equal rights and we all have feelings. I personally won’t make purchases from any shops that I can’t or have trouble accessing. I will go somewhere that respects my rights as a person as far as choice. Everyone needs to be valued.


Comments

12 Comments so far

  1. Diane on November 9, 2008 10:44 pm

    Hi Heather,
    I found reading your article helpful,sometimes I guess I feel its just me having to deal with this, so its really great to read about someone else with the same challenges.

    Im new to all of this, and I was diagnosed in May,I went from being independant running a business, doing my own thing,to now loss of independance,and finantial freedom, as well as being stuck at home,I have to wait until my hubby is at home, to take me shopping etc, luckily for me my car is automatic, however, I cant go far, or shop by myself,as Im having trouble just walking from the car park to the shop,or bring shopping to the car if its parked to far away, theres nothing worst in taking hubby Bra and knicker shopping,
    I applied to the local council for a disability permit for my car, but they knocked me back, and would only give me a permit for extra time in the carpark. which still leaves me housebound and dependant on others, I think the its difficult for people to see that I have illness, as I still look the same to everyone, however I certainly dont feel the same.
    I certainly dont want to become aburden to others.
    Thanks again for your article everyone does need to be valued.

  2. Naomi Creek on November 10, 2008 5:19 pm

    Hi Diane

    I was just wondering in regard to your application for your disabled permit, did you get a doctor to fill out the required information?

    I am fortunate enough to have got a pass, as I have enormous troubles walking much distance. You may want to ask them why you got knocked back and try reapplying. If you have a genuine disability, they should give you one.

    Good Luck.
    Regards
    Naomi :)

  3. Diane on November 10, 2008 10:19 pm

    Hi Naomi
    Thanks for your reply,
    I did get my doctor to fill it out, and they isued me with a catogory two permit which gives me double the time in a standard carpark,
    My doctor didnt think this was good enough as I cannot walk any distances without alot of pain,and that I am now housebound.
    so he requested a catogory one, and they still knocked it back., stating that I can only have one if I have a walking aid such as a walking frame.
    I have asked Arthritis Vic to look into it for me, but they dont seem to have any luck either.
    Thats the problem with this condition, we look ok on the outside, but are going through hell on the inside,
    all I want is regain some of my independance,
    Regards Diane

  4. Naomi Creek on November 11, 2008 10:24 am

    Hi Diane

    That is certainly not good enough. I have a category one permit and I usually don’t walk with any aids. What I would do now is approach your local Member of Parliament to go into bat for you or ring up Neil Mitchell on the radio. Which council are you in?

    Naomi

  5. Diane on November 11, 2008 8:53 pm

    Hi Naomi

    Yeah I dont think it is good enough either,the council is Melton. You know I probably wouldnt even use it if I was having a good day or could get a park close to shops, as I know disabled parking is in short supply, it really got to me when I had to pick up my Hubby from the airport, by the time I walked from the carpark to arrivals I was in tears with pain and questioning whether i can go on like this.
    Diane

  6. Nicola on February 3, 2009 9:39 pm

    Hi Diane,
    I think you should definitely follow up on this issue. I know it feels strange to be so adamant about calling yourself a “disabled person”, but ultimately I decided my own definition of disabled was too narrow. That is, the problem is with my idea of the name, not with me.
    I’m fairly sure that you can hire walking sticks. Maybe hire a collapsable one for a few weeks (it can fold up like a tent pole into your handbag) and use it just on the bad days or the biggest distances. they’re also quite good on uneven surfaces or kerbs etc. Not only is it possible you’ll actually find it handy sometimes (I was 21 when i was diagnosed, so i fully understand how difficult it is to reconcile your life with a walking stick) but you too can tick “yes i use a walking aid” when applying for the permit.
    good luck! (with everything)
    Nicola

  7. Nicola on February 3, 2009 9:41 pm

    p.s yes, disabled parking is frequently in short supply. it certainly appears plenty of blue sticker ppl like to shop or eat or see movies. but you are just as worthy as anybody else of parking in those bays!!

  8. Frankie on June 27, 2009 7:19 pm

    Hello,

    I was reading this and found it very interesting. Someone who has just as much difficulty getting around as I do! I was only diagnosed with RA 3 months ago and am still waiting for the meds to kick in. Nothing else has made any difference so far. What I really want to know is if people have found that the meds have helped. I want to know A) if I should be buying mobility aids so I can go shopping (I’m 25 years old and need my shopping therapy!!) and B) whether I should look at applying for a disabled parking permit. But there is so much conflicting information out there and I can’t work out whether I am going to improve so much that I’ll be able to do these things again without pain or whether I should start accepting that this is how its going to be and start making choices (and spending money on aids) so I can live the life I want. I am currently home bound as I just can’t cope with moving about. I managed to have some relatively pain free days after 2 weeks of sitting in front of the TV getting up only to make tea and feed myself (basically). The moment I attempted to return to a somewhat normal life…OUCH! Back at square one again. Now I am in pain all the time again and won’t be able to do much for the next fortnight or so. I really want to buy these aids if I’m going to be like this for most of the time but I need to know that I’m not going to get better in 2 months time when my Rhuematologist says the drugs will kick in (NB: I do not like this Rhuematologist and think he is a bad one – am changing soon) as some aids are expensive – I’m thinking I may need a scooter as my hands and shoulders also bother me so walking sticks or frames seem just as painful to me – plus a scooter has a little more dignity for a 25 year old…in my eyes anyway.

    Thank you
    Frankie

  9. Naomi Creek on June 28, 2009 11:38 am

    Hi Frankie

    I’m really sorry to hear about your recent diagnosis of RA. I have had RA for 27 years now, I was diagnosed at 12 years of age. I can certainly understand the concerns you have.

    Let me start by saying that having only had RA for 3 months, you shouldn’t be buying aids. There are some extremely effective medications available to sufferers now. There is still no “cure”, but newly diagnosed people should be able to get excellent treatment and with most go into remission. I would urge you to look at finding a new rheumatologist sooner rather than later. Getting the right medications early on is key in getting better.

    Can I ask what medications you are taking? Also, are you in Australia?

    In the meantime, if you do need some aids to get by, try to hire some so you don’t have to fork out too much money, but of course if you need to buy something just to get through each day, the do so. In regard to shopping, most shopping centres hire out scooters for no cost, so you can still get your shopping fix.

    Hang in there. There is hope on the horizon.

    Cheers
    Naomi Creek :)

  10. Dannii on June 29, 2009 10:54 am

    Hi there,

    I am in the same boat as you Frankie, I am 23 and i was diagnosed with RA 3 months ago, My Boyfriend and his family are finding it very hard to accept that i have an illness and i am not as Tom-Boyish as i use to be as i cant do alot of things. The hardest thing for me at the moment is trying to keep my friends, stay in control of my relationship and keep my job. I cant go out and “party” as i cant stand for long periods of time, and if i was to go out and drink it takes me about 2 – 3 weeks to recover. I work for HP in Melbourne and on the keyboard and mouse all day long, all my joints are constantly in pain, and it seems Pain Killers can only do so much. Finding Shoes and warm clothes to wear and very hard to find also. The smallest things like doing up the zipper to my boots and feeding the dogs causes Pain. I have just started taking Methotrexate and waiting for that to kick in. I am seeing Mark Patrick in Dandenong as my specialist and he seems to want to work with me unlike the other 2 specialists i have already seen. My whole life seems to be put on hold while i figure out how to deal with the pain and how to manage my day to day life, I am a positive person but i dont seem to have the support i have heard from all the other stories. I thought i was completly on my own but reading these stories has really opened my eyes, and i am not on my own….. I am starting water theropy tomorrow in Ringwood with my Physio so i will see if this helps.
    I hope to meet some of you soon as this may be the support i am needing.
    Take care to all.

  11. Frankie on June 29, 2009 11:38 am

    Hi Dannii,
    I think you will find that the hydrotherapy will help a lot more than you imagine it would (that’s what I found anyway). I know what you mean in regards to support. People our age have trouble understanding the condition and just how badly it effects your day to day living. I had to stop work altogether. Even though I was only working 3 days I week, I was finding too difficult to keep up as by the third day I couldn’t work at all. I hope that you will be able to stick it out.
    I have heard that it will get much better once your meds start working. If you are able to do some gentle exercise such as walking or hydrotherapy, then do. It is important for joint mobility.
    Just keep trying to explain to your friends what your going through. Try to go out when possible. The movies is a great option as you don’t have to move once you’re there. Most multi-level cinemas have lifts and just make sure you take your time to find the closest park. If your friend is driving, stress that you need to be really close (unless that want to piggy back you inside! LOL). Invite people over for a Sex and the City day (or some other well loved show or movie series) and you can sit down and drink cocktails or champagne and snacking. Just ask if you can get help with food – maybe have your friends bring things? I hope these suggestions are helpful. Just keep thinking outside the box so that you can still catch up with your friends.
    Good luck and keep thinking positive.

  12. Dannii on June 29, 2009 2:10 pm

    Hi Frankie,
    Thank you so much for your response, i will keep those things in mind, all my friends are happy to do movie night, but honestly there are only so many of them you can attend hahaha, I did go to the movies the other night and saw transformers (fantastic movie) but i found my knees froze and i needed the guys to pick me up out of my seat and carry me out, once i had walked (hobbled) around for a bit thought lets get home to the warmth and to my luck there were no escalators down, only up, so i had to climb down the 40 steps, i counted. Not happy!! I am at that point where i should cut my hours down just due to so much pain and stuggling to keep up but i have a house to pay for and i have to keep things afloat. I really do appreciate you response as i was really scared i was the only young one out there who had RA, It would be great if anyone can suggest any little secrets.
    My relationship, i am so worried about at the moment, coz i am waiting for all the meds to kick in, i am up and down emotionally and moody, in pain and sooooo tired and Dean just cant keep up with it all. Is Yoga or Mediation something to try to possibly control my outbusts? Has anyone tried these?
    Thanks again and Take care

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