So just saw Prof Edwards today about my increase in symptoms! Bless him he agrees it's all the FND and wants another MRI to confirm there's nothing else going in! With Driving I'm clear to do it but struggle due to weakness in left leg and arm / wrist. I'm sure the clutch is going to die one day soon. He mentioned going to local mobility center see if they can help! Now I'm not on disablilty but do any of you get help with hiring an adapted car?? I really need an automatic one to allow me to keep driving and keep my job! He's also referring me for Ocupational help review as I struggle with cooking, (can't carry pans) forget I've put stuff in to cook, can't cook simple meals, struggle with cleaning and basic stuff. Gosh some days I can't even figure out what the kids want me to do... any advice in relation to this greatfully received.
Also who would I go to for help in this?
Thanks guys hope your well xxx
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englishmumof2
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I can empathise with your struggles. Have you applied for PIP (Personal Independence Payment) through the DWP? If awarded the higher rate of the mobility component, which it sounds like you should be, then you can access the motability scheme through which you can lease an automatic car & have any adaptations you may need. Depending on the car you choose, there may be an advance payment but there are a lot of options to choose from and some don't even cost the full mobility component of the PIP award.
Also, in terms of house type stuff, I've had to concede that it's about finding different ways to do the things you always took for granted (like carrying a pan). I've also found that's one of the hardest things to come to terms with. The way I do it, which is seldom as I live alone :P, is to have a stool (provided by occupational health & not the prettiest to look at but works) at the cooker where I can rest if required to monitor or stir a boiling pot, etc. Filling the actual pan itself and carrying it difficult as you say so I use a jug (smaller & lighter to carry) to fill the pot and when it comes time to strain whatever is cooking I use a colander 'trowel' which has been my best find yet (and only about £2 from B&M! It looks like this - bmstores.co.uk/products/2-i... can pay a fortune for them elsewhere so make sure you check out your local bargain shop first!) After dinner and when the water has cooled, you can then use the jug to decant most of the water again until the pot is easy to carry. Of course it depends on the size of your kitchen. I have a galley kitchen where my cooker is practically next to the draining board of my sink so that helps reduce the mess of the whole thing quite a bit. I also have a trolley which is useful for moving heavier things back and forth in the kitchen if needs be but my main use for it is to trasnport meals & drinks, etc to my dining table (which is through my living room - it's a strange layout) and again, that was supplied by occupational health. I also have a bath board (I know you haven't mentioned difficulty with bathing but thought I'd mention it anyway) which is by far the one thing I couldn't do without - I'm not able to 'step' over the side of the bath to use the shower so the board allows me to slide back and lift my legs over the edge, then be seated to have a shower which is damn near impossible if, like me, you can't stand unsupported, close your eyes (to rinse shampoo) or raise your arms (to apply shampoo!) whilst standing - again, this was provided by occupational health. However, despite them being able to see for themselves, I had to very assertively state my case and not take no for an answer! I also have a medical background which helps as it gets them flustered when you can 'talk their talk' and cut through the BS.
There are also products like Dycem, which is a sheet of grippy plastic which you can wrap around pot handles (insulated ones!), jar lids, etc to aid with grip if you have weakness in your hands. It is very expensive though so unless you buy it yourself it's unlikely they'll provide it. I did get some from them but I honestly think it was a gesture to shut me up! Lol! However, there are cheaper substitutes from the likes of B&M - just have a look for non-slip matting, like the stuff you would line a drawer with to stop things rattling around.
Sorry for the long post but hope it's useful for you.
Oh, and the other thing I was going to mention was hoovering! Not having the strength to get the hoover out the cupboard or do the stairs was actually the first symptom I noticed. If you are able to, invest in a dyson V6. It will revolutionise your life!! Lol! They're on sale in currys just now (a new version is likely on the way) but the V6 is perfect. I can do my 3 bed, terraced house on a single charge and that includes stairs, upholstery (with 2 cats) and 'dusting' furniture surfaces. Honestly, it's worth the £ layout if you can. I couldn't do the housework without it now.
Go Vikki, practical help to keep us doing what we want to keep doing.
I know there are times when we all dwell on the things we can't do but the buzz from being able to get some lost skill back is really better than any meds.
Thank you VictoriaC for all that practical advice, especially for the kitchen/cooking. I am left handed and loose the use of it on a regular basis, for up to 5 days! So will be able to put what you say to good use. My Left hand is AWAL (absent without Leave)as I call it, and my right is trying to go too! Even typing this is hard work, make loads of mistakes.
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