Health Services OT

[Alison C]

Thanks Stone - I had earlier written the message in capitals as I thought it was easier to read (my blind friend finds reading capitals in text messages easier) - so sorry I got it wrong.

Alison

[lil_miffy]

Thanks Stone - I had earlier written the message in capitals as I thought it was easier to read (my blind friend finds reading capitals in text messages easier) - so sorry I got it wrong.

Alison

thanks for the thought alison Im not blind now, i got all my sight back last May, this is why i just can't go through chasing social services again as i had to do this last year with the sightloss social worker. its the same thing happening all over again and while it might seem to others that 'just fight it you are entitled' seems easy, this is one of many fights iv had to do and i simply don't have the energy or motivation to do it anymore.

[lil_miffy]

I feel really bad for moaning now becuase the social worker phoned me today. She has managed to secure funding for me to have someone to take me shopping and said that i might be able to get more for personal care so is coming to see me during the week. She's been really behind with her work so that is why i didnt hear from her for so long.

[trixiepix]

Hi all,

Back to the hospital on Wednesday with Belle, we're due to see the physio again, orthotist for her new insoles but also the occupational therapist - it's the first time i've met with an OT, what should i expect and what will she be able to help with??

Hope you are all ok.

Sarahx

[Alison C]

How did the OT visit go? Have you seen my page re OT on the main HMSA website?

Cheerio
Alison

[trixiepix]

Hi Alison,

Unfortunately didn't get to see the OT (physio hadn't arranged the appt!) - physio did mention she would send me some leaflets about big buggies (where we could buy one) and also a letter to take into school detailing Belle's condition in detail and what the school needs to do to try to pace her day a little better, in turn hopefully improving her night pains.
We've been away for the last week and returned today to find letter from the physio with the school letter plus it mentioned she had spoken to collegues for advice about the big buggy issue ( we really don't want Belle to use a buggy but the reality of the situation when we need to go anywhere where we haven't got the car is that we can't keep carrying her when her legs are tired/knees hurt and time restrictions again mean that we can't necessarily keep stopping and resting, on holiday we had to use the buggy some of the time(which she is too big for), carry her some of the time and my husband had her on his shoulders some of the time (needless to say she was walking too!!)) and the advice was to have Belle referred to the 'wheelchair centre' at our hospital, i'm pleased in some respects that there is this option for an assessment but it's tinged again with the sadness when i reflect on the situation at this moment in time)

We've got some more resistant therapy putty for her hands too and her hand strength was worse than last time!!

Anyway, i'll let you know how we get on!!

Sx

[Alison C]

Hello

Thanks for getting in touch.

What a pity the OT was not there. Can you ask for a referral to OT as it sounds as if you may need one eg school, advice re hands and so on - OT covers such a lot of areas!

Wheelchair centres DO supply buggies. You may be given a wider buggy. My knowledge of specific ones is a bit out of date now but wheelchair centres used to supply Major Maclarens and Convaid Cruisers - not sure what is currently supplied now. I like the Convaid Cruiser when I saw it many years ago - light weight and easy to turn and fold, and you see the child first not the chair.

Your sadness is felt by so many of us here at times like this - you are not alone. I try to find fun things to do or eat! We all have moments like this so I find it hard when we have so many medical appts in one month - I like them spaced if I can to help me cope.

Putty - glad you have some. We have some too. My children like the colour changing putty from Firebox.com - makes exercising more fun but it is not as tough as the really hard putty type. Firebox are bringing out a putty which you can shape and it keeps it shape so I have pre-ordered some. I also mean to get my children cooking to exercise their hands eg bread, biscuits etc - must get around to it! ie trying to make something or do something fun whilst exercising - I suppose this is my OT background!

Night pains could be helped by GOSH exercise programme so GOSH say.

Finding letters on the doormat, reading everything in black and white take something too. And a strong cup of tea, for me.

Please keep in touch.
Alison

[Charlee]

I have just had a phone call from my local OT unit, the lady was so frinedly i ended up blubbing on the phone she said that waiting time in my area is about 2 weeks, she is going to help me to move as our local council havent been at all supportive and she is going to come and see what she can do to hep and order me any equiptment i need. Its like a weight has been lifted. I am very about the crying though.

[AnnaH]

I've just had a letter telling me the waiting time for OT is 28 weeks. I might as well not bother, seeing as my situation changes so much and every time it is, I end up researching what will help and buying the equipment needed. I can't even get DLA - I'm not disabled apparently. Odd how I have so many problems mobilising or picking stuff up etc.

[sheppeyescapee]

I had some weird therapy putty come today in the post from the Bath OT with a couple of pages of exercises Haven't looked at the exercises yet, but it is pretty good as a stimmy thing Got new wrist braces when I went last week

[Englishgremlin1]

excelent. I have to use putty for my had exercises - it is weird an changes colour with the heat!

[Charlee]

The OT is coming this morning at 10! Im nervous, im worried she will think im over reacctiong about my HMS, i guess that comes from many years of people looking at me as if im lazy and a hypercondriact, im holding out hope she might be able to give me some help. Mainly with Bathing and acsess to my flat, everytime i lift my arms to wash my hair at least one of my shoulders pops out and really hurts. Anyone got any tips or advice for when she comes anything that might be helpfull or not so much?

[WinonaLemonade]

hi, when i had an ot visit she was really nice and it was different to seeing doctors because she knew all about the kind of problems you can have at home and was even suggesting problems i might have or get in the future. good luck and don't worry yourself .

[Beth]

My daughter finally had her OT evaluation yesterday. The OT is very concerned about significant weakness in her shoulders, elbows, wrists and fingers so Emily will have visits 2X a week for the forseeable future - or until insurance puts a stop to it . It is so discouraging to discover how much she has deconditioned in such a short period of time but at least we are finally going to get some much needed help. We mainly wanted an assesment of her fingers but are getting the whole deal. Not complaining though!

I am a little concerned about the therapy being too aggressive but 'G', the OT, is a colleague of my husband and is extremely compassionate with Emily and I know she will adapt the exercises as needed. She admitted she is not familiar with EDS but is willing to learn.

Question, does the book by Graham and Kerr deal at all with OT/ upper body rehab? Would it be helpful to both PT and OT. Since she is having both PT and OT at the same place, if the book could help both of them treat her I can suggest it to the Rehab Dept or get it ourselves and lend it to them.

Thanks,
Beth

[evenwen]

Re my posts in early 2009:

I finally got someone to refer me to an OT so I am waiting with bated breath to see if they are able to do anything for me!

With wonderful timing my landlord has let me know that he and his wife are separating so they will be selling my home so best not to get anything bulky if I'm offered it!