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jenni_b
#21 Posted : Thursday, April 29, 2010 7:53:07 AM Quote
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Location: nr Southampton
hello everyone,

thankyou for your kindnesses! you will know I am not naturally mrs doom and gloom but this really has knocked me sideways (thankfully I wasnt standing or I would topple over wouldnt I?!!)

lol

I have had years of hydro at different times. Hydro is a big deal locally for me, I need someone to drive me there, someone to sort me into a costume and then there is the hydro itself. Then need someone to dry me off, drive me home and then I have to go to bed afterwards. I would need to pay someone to have Bernice all day.

They only do "intensive rehab" here so you get 2 sessions a wk for 3 wks and then nothing

I just dont think the huge degree of effort is worth it. Richard is cross that I dont want to try it but I just cant see any beneficial points.

I really thought this physio was a good one, she arranged a longer appt for a "proper assessment" this last time but in actual fact she only looked briefly at my legs and couldnt understand why my feet go on their edges as they do etc, which does not encourage me that she knows a lot about long term RA.

In fact, she has discharged me as there is nothing she can do.

I know another person with severe RA who has a physio every day doing things with her!

Perhaps I should try ringing the rheummy nurses about it?

Jenni x
how to be a velvet bulldoser
Paula-C
#22 Posted : Thursday, April 29, 2010 8:49:27 AM Quote
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Hello Jenni

Just sending you lots of gentle hugs and cuddles (huggles what my grandchildren call them).

Just want to add.................I am shocked at the Physio discharging you. If I was you I would ask to see someone else more senior, she just can't give up on you, the Physio's are there to help you and help you they must.

Thinking of you

Paula x x x x
JulieM
#23 Posted : Thursday, April 29, 2010 8:55:52 AM Quote
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Yes i agree-second opinion for sure-maybe privately?
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
Jan
#24 Posted : Thursday, April 29, 2010 9:54:49 AM Quote
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Lots of love Jenni,
Jan xxxxxxxxxxxxxxxxxxxxxxxxxxx
HellyC
#25 Posted : Thursday, April 29, 2010 9:57:55 AM Quote
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I'd be a bit concerned if my physio couldn't understand why my feet go on their edges... Whilst not every physio would specialise in long term RA, they should be able to use a bit of common sense...

I can totally understand why you feel its more effort going to hydrotherapy... I felt exhausted just reading. I still think on a longer term you would benefit but to only be given 3 weeks worth is so unfair.

With my hospital we get 6 weeks worth of sessions and they run 2/3 sessions a week. We also have the added bonus of a local arthritis group using the pool once a week 'privately'... something they have arranged directly with the hospital.... A physio is there for guidance but the group are left to their own devices and the only condition is they arrange their own lifeguard (who happens to be a volunteer). The group pay about £2 to use the pool, plus they have raised funds towards the upkeep of the hydro pool.

I can't believe your physio has discharged you OhMyGod Just because she feels there is nothing she can do, doesn't mean that you need to resigned to the scrap heap. She should have sought advice from someone with more experience and common sense!
Helly x

Celebrating 10yrs of National Rheumatoid Arthritis Society

Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland






Read my blog - Helly Copeland

LynW
#26 Posted : Thursday, April 29, 2010 11:25:15 AM Quote
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Location: Thornton Cleveleys
bouncingtigger wrote:
I can't believe your physio has discharged you OhMyGod Just because she feels there is nothing she can do, doesn't mean that you need to resigned to the scrap heap. She should have sought advice from someone with more experience and common sense!


Morning Jenni

Agree whole heartedly with Helly. I think this episode is both shabby and unprofessional. If this physio did not have the required expertise to help you she should have spoken with a more senior member of staff immediately. Seems to me she has neither experience nor manners to be dealing with patients with more severe problems. And as for common sense? Clearly lacking in that department too!! I feel upset and cross on your behalf Jenni and would feel very much like contacting the rheumatology team for their thoughts on this. I'm not a physio, obviously, but feel sure it must be possible to do something to help you. I know it's expensive but wonder whether you might be able to stretch to a private appointment, if only to get another opinion, but see what Rheumatology have to say first.

I see what you mean about the hydro. I hadn't appreciated just how they organise it which does seem rather odd. What's the good of such intensive work at the start and then ... nothing? Surely any sort of therapy needs regular and gentle follow up?! Perhaps that's just me wearing a 'sensible' hat!! Don't think we have anything like that up here, still in the dark ages with some things!

Please phone the rheummies and hear what they have to say. Do keep us posted. Will be thinking about you,

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Kathleen_C
#27 Posted : Thursday, April 29, 2010 3:26:31 PM Quote
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I feel for you, Jenni, I really do. I can`t add much to what has been said, but I have had lots of dealings with physios over the years, both before and since RA came a-calling.When I paid for private physio, I had really good treatment - more time, more understanding.After Achilles surgery, I asked my consultant to recommend a physio, even if it was out of the area, as this was my second lot of surgery, and the physio following the first op was negligible. If you can find a physio who is much more clued-up on RA then get another opinion. They`re like anyone else, some good, some bad, & some in the wrong job, but a good one I think would be able to offer you more help.

Take care,

Kathleen x

Rose-B
#28 Posted : Thursday, April 29, 2010 4:07:16 PM Quote
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Hello Jenni,

Poor you how un professional . I think I would try and get another opionion.

Thinking of you

Rose

prioryc
#29 Posted : Thursday, April 29, 2010 4:47:14 PM Quote
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Sending you lots of love Jenni. I agree with all that has been said by others.

Eleanor x
jenni_b
#30 Posted : Thursday, April 29, 2010 4:54:12 PM Quote
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Hello everyone

I have left a message for the rheumatology nurses now.

Hope they will call back tomorrow. I am seeing the OT at the main hospital next wk(not the community clinic where I saw the physio) and so will be chatting some options through with her.

Bernice isnt well againSad her temperature keeps spiking. the gp has stopped the anti biotics and hope to get a wee sample so they have stuck a little bag to the "important bits". RollEyes Plus Michael is in super stupor brain drain mode as I have rumbled him for lack of washing, wearing the same stinky uniform all wk and no, repeat NO homework all wk. This is a lad in year 10 with GCSEs starting in 3 wks time!!!

lol

Been busing myself making a revision timetable and ordering some revision guides and some Percy Jackson bks, the avatar dvd as "incentives" for the lad actually doing some workRazz

I do love my childrenWub

its just as well because otherwise they would have been under the patio long ago!

Love a not entirely useless Jenni xx
how to be a velvet bulldoser
barbara-o
#31 Posted : Thursday, April 29, 2010 5:06:02 PM Quote
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Jenni please do not accept this, the physio had absolutely no right to speak to you like this, and will be comong over to you to borrow your red boots to sort her out! The physio should establish your baseline, and build up from there; hydro therapy is fantastic and helps to strengthen and build up the muscles and feel you should not dismiss it.

sending you lots of gentle cyber hugs,

love,

Barbara
XXXXXX
Calmwater22
#32 Posted : Thursday, April 29, 2010 6:47:15 PM Quote
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Hi Jenni
good idea
call rheumy nurse, ask input explain situation,Ot meeting next week thats good.
oh dear poor bernice and michael so gsces very soon he will do it,with your prompt your doing great such inner strength with god we can do anything.
discharged nope.
she should have asked input from more senior phsyiotherapist,2nd opnion defintely.


nerve conduction to muscles,now with the high inflammtion one will have less enrve output therefor weaker msucles,loss mobility it can be reveresed with a betetr phsyio willing put some effort into helpign you.
im praying big hugs support.


a phsyio to come to your home would be great way forward,or at close clinic then hydro when thigns more stronger.
lv mellySmile
cuddly cats make my world seem so much more fun
BarbieGirl
#33 Posted : Thursday, April 29, 2010 8:27:32 PM Quote
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Jenni, hope you get somewhere witht he nurses tomorrow, will be thinking of you. Sorry Bernice still unwell, lets hope it can be sorted fast, its so awful when a child is sick and you cant do anything for them. As for Michael, teenagers doh!!! Wishing you luck with everything Jenni and sending lots of hugs and prayers to you x
BARBARA
Paula-C
#34 Posted : Friday, April 30, 2010 10:19:56 AM Quote
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Jenni

Is your physio just for RA patients or is she an all rounder. I'm sure I've read on the forum that some members phsio's do not specalise in RA but see lots of people with various problems. It's just a thought.

I'm lucky, my hospital is really, really big and both my OT and Physio are just for RA patients.

Hope Bernice is feeling better today. Michael................well, boys will be boys, sometimes I'm so pleased that I only had girls., but they do bring different problems.

Good to see you've not lost your sense of humour........the patio bit, made me giggle.

Love Paula x x
jeanb
#35 Posted : Friday, April 30, 2010 12:32:38 PM Quote
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How's Berny today? And is Michael more fragrant?BigGrin

As for the patio - made me giggle, too, Paula!

Much love
Jeanxxxxxxxxxxx
LynW
#36 Posted : Friday, April 30, 2010 12:48:29 PM Quote
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Location: Thornton Cleveleys
LOL LOL LOL Don't think Jenni can get back to us right now ... she's busy digging (if only, eh?!)

Yes, I recognise well the problems of a teenage boy. I too have a Year 10 doing GCSE's but he's otherwise engaged in Drama performances, a mock election, an online philosophy course and has now announced a possible trip to the Lake District this weekend camping!! Er... school work? Exams fast approaching ..... Blink

Hope Bernie is on the mend.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Audrey33
#37 Posted : Friday, April 30, 2010 2:31:50 PM Quote
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Hi Jenni

I am sorry they have done this on you but you need to see an other one and start at your base line, I had that on my first visit to physio they told me I had got RA and there was northing they could do only give me crutches I went to the senior physio and told him he re arranged my appointments and the new one i have is great so do contact the senior one and see what he/she can do for you. good luck with that and do take strength from all the support and help you have given us

Lots of Hugs and......... a new Spade for you LOL

take care be safe

Audrey. RollEyes
lizziemouse
#38 Posted : Friday, April 30, 2010 10:16:30 PM Quote
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Big BIG huggles Jenni and don't accept this - you need a second opinion and a much more thoughtful professional - why do these people work in health care - do they not realise the impact of their words and actions?

Hope you gain some inner strength to seek other support / second opinion.

Are there any hydo facilities nearer to you? We were able to access one at a local school for one of the adults I support - meaning just a ten minute drive rather than over an hour ~ the physio helped us to explore nearby alternatives.

Hope you get some good support from your rheumy team about this xxxxx

Take care love Liz xxxxx
mel1
#39 Posted : Saturday, May 01, 2010 11:36:57 AM Quote
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Dear jenni
I can not believe what I have been reading. I must say you have made my recent feelings of depression seem very lame.
Please do not accept what she has told you, she seems to know nothing of RA.
i do not know if you have them but my recent wearing of nhs made surgical boots has helped
1) my balance
2) how long I can stand for
3) my walking is straighter
If you can find a way of improving muscle strength they may give a little more support.
I was also thinking of those plate excercise machines where it does all of the work for you.
But any way jenni take great care of yourself and my regard and support are yours.
Love Melanie
lyn2
#40 Posted : Sunday, May 02, 2010 3:43:59 PM Quote
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Hi Jenni

You are certainly not useless, all the love and care you give to your children. Sorry to hear of this latest setback, I can't believe how that physio treated you. Is she a rheumy physio? I've been seeing a rheumy physio for weeks (not that it has helped much), but she has tried. I know I'm not nearly as ill as you are though.

I can inderstand how you feel about hydro, but I think it would help in the long term.

Sending lots of hugs and thinking of you.

Love Lyn
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