Have been diagnosed for nearly five years, (though symptoms were there for a long time before that.) Over those five years the main problem has been mobility and I have used a stick and more recently crutches, but at least I could get around.
Over the last two weeks my mobility has deteriorated significantly. Getting out is difficult, as is moving around indoors. I have ordered a trolley which should allow carrying food and drinks in the flat. I also get deliveries on line, so I can survive.
Problem I am now finding is that other everyday operations are just about impossible, such as putting out the rubbish or making the bed.
My inclination is to find someone to come in and help for a short time, but I have no idea where to start looking. Has anyone else had this problem?
I live alone and family all lives miles away.
I use Direct Payments to pay someone to come in and help me with personal care and a bit of light housework. I also use it to pay for 2 other carers to take me out and do a sleepover twice a week, to give my hubby a break.
Is this something like what you mean?
If so, just ask Social Services for an assessment of your needs.
ps I understand your worries re your mobility, as I am a full time wheelchair user…having gone through al the phases you talk about
Thanks for the response. That seems to be the way forward - I shall need to contact the local council for an assessment.
like yourself I have mobility problems so I use a rollator in doors. I have physio every week and I asked about using crutches and she strongly advised me not to as they are not stable enough. So far as getting help I agree with what Poll has said, contact social services, they are very helpful.
I had the same problem as you a few years ago, as I found it harder & harder to walk, and do things like get myself fed. I was lucky as I lived with friends who could help, but I knew it couldn’t go on like that. Being in a 2 up/2 down terrace house didn’t help, as I often didn’t feel strong enough to go downstairs. There were two things that made an enormous difference though. One was getting Direct Payments, which meant I could employ a friend of mine to do things like cleaning & cooking. The other was moving to a ground floor flat & using a wheelchair indoors. Is possible for you to use a wheelchair at home? If you think it is, ask to be referred to your local wheelchair services.
Hope you get the help & support you need.
Do try a Rollator - l rely on mine all the time - it is great for supporting me - holds me upright. And it has a seat to use when l need it.
l have a Topro Olympus - recommended by Patrick on this site. aides4disabled.com. l also have another upstairs - so l can get up stairs on my stairlift and the other rollator is waiting for me.
lt gives me lots more independence as l can carry my meals/drinks on a tray on it. And most importantly, get to the loo faster.
Since having the Topro - l am now managing to do things l had almost given up hope of doing. The round laundry basket fits on it - so l can hang out the washing. Watering can fits nicely in the basket part - so l can go out and water my tubs/baskets/ and even pick my runner beans. Having the seat there for safety makes such a difference. And it is easy to fold up and put in the car. Have even been around the supermarket with it - as it does hold quite a lot. Also the library. lts definitely given me back some independence.
Thanks for all your comments. It’s good to know that I am not alone in facing this.
Although the progressive element means that the condition will deteriorate over time, I have had episodes in the past where mobility has worsened for a few days and then it improved. This time I am not so sure.