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Occupational therapist advice

Hi I was hoping for some advice about role of occupational therapist. In March 2012 I had a relapse. I lost co-ordination and strength in my right arm/hand, couldn’t straighten fingers at all, balance issues, ms hug etc. I was dx in June and referred for physio (I thought) in July 2012. Well I have an appointment, at last, for this week but not for physio, for OT to come to my house instead. When they rang I said I was expecting a physio appointment and they said they could refer me if needed. I have still got residual symptoms as I cannot fully raise my arm still or fully straighten fingers along with other bits but having waited so long for appointment I want to get the most from it but not sure what to expect. Any ideas? Mish x

the OT will look around your house with you and ask which jobs and areas give you problems.

he/she will provide aids to make life a bit easier.

mine gave me a little rubber device to make opening jars and bottles easier.

i was given a perching stool so that i can sit down whilst peeling veg. to be honest i have never used it but my son uses it when he’s at his decks.

handrails in the shower and bath. these are great and used every day.

we already have handrails on both sides of the stairs because the lady we bought the house from had a stroke.

carole x

A visit from an Occupational Therapist should be excellent news as they can provide all sorts of equipment to assist with daily living.

However, some items seem to be subject to means testing and some to the postcode lottery.

Items that I know OT’s have provided (not all for me) include:

Bed aid (slides under mattress and helps you to turn over)

Grabber (to help reach things)

Battery powered seat for bath (to let you down into water and back up)

Commode (saves walk to toilet at night)

Clos-o-mat toilet (washes and dries you automatically)

Monkey ladder (rope ladder to assist with sitting up in bed)

Monkey pole (triangle over bed - again to help with sitting up)

Long shoe horns (to assist with putting on socks and shoes)

Grab rails (wherever you feel they might help)

I am sure there are many other items that can be added to this list - just think of tasks that you struggle with and ask for their suggestions.

Thank you for replies. I will have to think about that. After a year and a half with no help you sort of learn to adapt and do most things, although grab rails in the shower maybe a good idea! I suspect the thing I would like the most help with, which is my hand and arm, may not respond to physio now after being like this for so long. Still fingers crossed! Thanks again. Mish x

Hi again, Well after worrying that I may be wasting her time, she was lovely and it went really well. I think I found out why I had to wait a year as well, they had some un heard of address for me! Ah well, seen her now. I don’t need any aids in house yet but she is ordering a splint for my arm to sleep in (joy), to help stop it becoming more deformed, moi deformed I’m gorgeous, (lol) and to see her again and possibly a physio in two weeks time. She suggested applying for DLA (pip) although not sure I will qualify but nothing ventured and all that. Mish x

Stupid question, but how do you get referred for OT and MS nurse please? I see the ms consultant at the end of August, will they refer me then. I got my diagnosis at the end of June and requested referral to a consultant closer to home, will they provide help when I see him? It’s been a long process so far and I would like to know if each ms doctor has nurses they refer you to or is it like being referred to the district nurses and physio which the gp does.

Sorry, it seems even more daft now that I’ve read it back but I really haven’t a clue. I suppose it’s taken so long to get this far that waiting another month to see the new Neuro isn’t so bad but if you could let me know I’d be grateful.

Thanks.

Min x

Hi min I think it is different in different areas. From what I have read on the forum not every body gets a ms nurse but may see a neurologist instead. In my case I no longer see a neurologist unless there are any major changes. I was dx at first appointment ( already had two urgent MRI’s before seeing them) have only seen a neuro twice altogether and they referred me to the ms nurse. I am still on their books, so to speak, but I only see my ms nurse now, who corresponds with neuro about my DMD’s and other medication etc. It is my ms nurse who referred me to occupational therapist who in turn is now referring me to physio! MS nurses can be good to call if you are concerned about new symptoms, however they can be hard to get hold of as they tend to cover large areas. I would ask your consultant at your next meeting what sort of support is available to you. They can probably refer you to OT themselves if they feel you need it. It can take time to get an appointment through. Mine took a year, although it turns out they had someone else’s address on my file for some odd reason, in fact OT was trying to go to it yesterday, good job she called to ask for direction! Lol Hope that helps. Mish x

I know that in my area (Kent), you can self refer Min. Just call your local hospital and ask for the MS Nurse and I’m sure they’ll be able to help.

Mags x

Hi, in my experience OTs are the best thing since sliced bread!

Over the 15 years I have been disabled, different OTs have visited me at home and provided me with equipment which has made my life (and my hubby`s) so much safer and easier.

Their brains are super trained to come up with ideas we hadn`t thought of.

If I could go back to my teens, I would love to be an OT.

luv Pollx

Oh i agree, she was very good. Just thankful to be seeing someone at last. Seeing her again in two weeks so feel like getting some help at last. : ) Mish x

For Min

Your neuro should be able to refer you to an OT and a physio. However … although I think this is what happens in most places, it’s never been the way it worked for me. I got offered a place at an exercise class at our local Rehabilitation Hospital. I have been going to this, weekly or fortnightly for something like seven years. The physio who runs the class has access to the services that the hospital offers and I think they’ve come to me through her - it’s just possible that I’ve gone to my GP and got a referral from him (can’t remember I’m afraid, it’s been several years since I asked for anything).

Anyway, this is a long-winded way of saying it might be worth talking to your GP to see what they can offer, in particular if they can refer you to a rehab hospital or to an OT or physio.

Thanks Everyone

I’m seeing the ms Neuro next month, have found someone else who goes to him and he apparently has the ms nurse there to see you, and I’ve researched and the ms society meet at the physio department of our hospital on a Monday night and have resources so might turn up there when I’m a bit more settled. Things are still hectic at the moment, but thanks again. I’ll see the gp if I don’t manage.

Min x