I have major balance issues, and, whilst waiting for tests etc and a (hopefully) final diagnosis, my Neuro has referred me for ‘therapy’ to try and help me on a ‘practical and pragmatic’ basis with my balance issues.
I have been sent a 3 hour appointment to be assessed, where it says I will be seen by a therapist and also, possibly, nurses and a doctor.
Have any of you had this kind of thing before who can tell me what to expect? I’m not sure if it is more occupational or physical therapy, or whether they will decide this after the assessment. The letter does say to wear loose clothing, so I’m expecting some kind of physical assessment (oh goody!). I’m not sure what they can do, but will go along with it and see what happens. They do also say in the letter that they like to give patients time to tell them everything, so this will be a first in itself! Bet they’ll have had enough of me by the end!!!
Never had this myself, or even heard of such a thing. Perhaps it’s postcode lottery at work again! I had physio to help ny balance and found it really useful. I hope it helps you, be interested to hear how you get on? Good luck.
This sounds interesting! I’m having major balance problems at the moment but I don’t know if it is from doubling my gabapentin or new symptoms from my problems moving from my left side to my right side. I will be interested to hear what happens.
It sounds like on Occupational Health assessment to me. They will look at the way you walk/sit etc., check you for muscle weaknesses and ask loads of questions. It is quite a long appointment, as they are very thorough, but if you start to flag just let them know (I did some of mine lying down as I was very tired). They can then work out where your main problems are and arrange for physio if they think it will help. Mine also came to the house to assess me for aids. Their report can be quite useful as evidence when applying for benefits. If they think you have problems with balance they may ask for you to be refered to your local balance clinic. Hope this helps.
Mags - the letter is from the Rehabilitation Team, which is a bit weird, but I suppose it all comes under the one umbrella. The Neuro’s letter following my initial consulation was copied to the local Physio department, so who knows where I’ll end up!
The appointment is right at my worst time of day, too, so will be a long old haul. I will just have to be honest and tell them if I am flagging.
Well, I had my appointment today. Everyone was really lovely and gave me time to explain things properly. I was seen by a Physio, and OT and a Nurse. They were actually quite shocked at how bad I was and that nobody (ie my GP) had referred me for any help before then.
I talked loads (!) and had a brief physical exam (muscle strength etc) which was very interesting, as the Physio picked up that my left side was weaker than the right and had some odd coordination issues going on, whereas it’s the right side I’m having issues with!!
Anyway, they gave me a walking stick to try but this didn’t help as it became clear that I need bilateral support (my brain also struggled to coordinate both feet and the hand with the stick as well, so I ended up doing a great impression of a steriotypical ‘doddery old man with stick’ from an old silent movie!!!). The Physio then produced a rollator (the 3-wheeled type with 2 handles that you push in front of you). It did actually make a huge difference and I felt more stable than I had in a long time. However, being the proud, self-conscious (and very stupid) lady that I am, I said I wasn’t prepared to use one in public and so am going to try 2 sticks (the Physio doesn’t think this is going to work) and 2 elbow crutches next week. I know I’m being really silly and stubborn, but I just don’t feel quite ready yet to accept that things have deteriorated to much that I need to take such drastic measures as using something like the rollator. I know it’s silly, but I just can’t accept it at the moment. I was really hoping one stick would have been sufficient, but it clearly isn’t. I have to say, though, that the Physio was lovely and said she totally understood and that they would try other alternatives.
Everyone I saw was absolutely lovely and didn’t make me feel at all as if I was wasting their time. They all gave me time to think and explain things properly in my own words, and were very understanding and respectful of my mobility limitations around the department.
I am now booked in to go once a week so they can try and help with the balance, and I’m also booked in to see someone there who specialises in vestibular/balance problems and has lots of sophisticated equipment (?torture devices!!) that can sometimes pick up things that have previously been missed.
All in all it was an exhausting but positive experience, but has made me realise that I can’t go on pretending I’m normal any longer. I do need help and these lovely people are prepared to work with me to help me as much as they can. I think I am very lucky and need to make the most of the help available (apart from the rollator, of course!).
That sounds really positive (apart from the need for a rollator). I’m so glad they were lovely and you feel they will be able to help you. I have been referred to lots of people too, so I just hope they are as good as yours.
I really wish I could use just one stick, but it was a disaster! It didn’t really do anything major to help the balance and my brain just could not concentrate on where my feet had to go AND what to do with the stick all at the same time! This is actually something that became apparent as they asked me questions…the signals from my brain telling my limbs what to do (especially my legs and feet) don’t always arrive at their destination! I kept saying “Sorry I’m such a problem”, but they said I was just “an interesting case”! Not sure if that’s good or bad, but the Neuro used the same phrase in his letter after he saw me.
Another possibly good thing was that the Nurse commented on the fact that the Neuro had signed his referral to them personally, using only his Christian name and a lovely quirky circle above the ‘i’ in his name! Apparently, this is unheard of, so she said he must be taking a personal interest in my case! I’m more inclined to think he just happened to be around when it needed signing and was in a fun mood, but it would be nice to think he’s on my case!!
Puddinglover - I hope all your referrals go well. May I ask who you will be seeing?
hiya…so glad your assesment went well…sounds positive… can understand re rollinator thing but it is a more natural way to move…just be aware that with one or two sticks your posture may change…please ensure they have measured you correctly…this happened to me some years ago and I ended up un known to me walking around with a stick that was actually too short for me…which has caused probs with my spine…and muscle In balance…am sure your Physios are excellent…also be aware that using sticks may cause callouses on your hands…over time and certain muscles will be required to work harder than others…so ask the Physios about this and keeping everything balanced…but as long as these things are helping you that’s the main aspect… also cycle gloves may help too… I have had balance issues for a long time both in my body but also vertigo and there are exercises the Physios may give you for this…cawthorn cooksey I think they are called…they help rebalance the brain and balance…but if you suffer vertigo they will bring on the dizziness etc…but you have to work through this until the brain re adjusts itself… let us know how you get on… e
Many thanks for the advice. I will make sure they measure me properly and show me how to use them properly…if I end up using them. I think I may be in some form of denial, and the refusal of the rollator was partly a reaction to the sudden realisation that things are probably a little more serious than I have been allowing myself to acknowledge.
I have just spoken to a friend who said I am being a prat and, if the rollator will give me some form of independence then I should grab it with both hands (literally!) and be thankful for it. She said she would definitely use one if it meant she could be more independent outside the house. It has now made me think more seriously about things and I may ask to use one around the department next week when I go back and see how I feel after using it for a while.
With regards to the balance exercises, Scoobie, my GP gave me the Cawthorne Cooksey exercises to do when the balance problem first flared a year ago and I did them for several months. They made me feel very yukky and didn’t seem to be improving anything so we just decided that I should stop doing them. I have been seen by ENT who have said there is no ear-related problem, and they are not referring to it as vertigo as the feeling of movement is all in my head, rather than having the sensation of things spinning around me.
I am feeling so ill at the moment, and just want some answers. These walking aids may help me move around without clinging to walls or my husband, but they’re not stopping the constant sensations going on in my head. Sometimes I think I’m going mad!!
How is your balance now, Scoobie? Are you still having problems or did they manage to sort you out?
I think I was referred for speech therapy (I think she said this would help my sometimes slurred speech, swallowing problems and word problems but I might be confused), neuro physio and OT (due to problems in bath and shower). I assume the neuro physio will help with balance, although I do seem to be improving in that area.
Hey Purple… that’s ok…it sounds silly re sticks and my mistake happened many years ago…even so I thought worth mentioning…my balance body wise has not been good for a long time but the vertigo started 3 yrs ago when neck problems acute started…a prolapsed disk was the issue but this had righted itself through my efforts…lol however I think vertigo is related to eye movements too for me and looking left and right…when I was driving…I too didn’t find those exercises useful at all…and also also saw and ent and an MRI of in re ear came back ok… I think you are wise Hun to consider the options open to you and the benefits…I ended up using a wheelchair after 3 yrs on dodgy stick…but I wasn’t keen at first…but eventually I adjusted and realised…I had less pain and spasm…more energy…and was able to do more…especially out and about…if you can find a balance re any equipment you use then do…equally it’s what you feel comfy with…I found with the stick and wheelie…people don’t really notice although children are naturally curious about these things…also ask the Physios are they helping you here for the long term or is this a short term measure…clearly the underlying cause needs to be established regarding further help and specific treatment but it’s good they are helping you now re quality of life and daily living issue and tasks…to remain as independant as possible…which lets face it we all want this…in the long run… I have been informed recently that the wheelchair advice I was given 12 yrs ago was not the best…they gave me a wheelchair and left me to it…lol however due to my mobility and movement probs I am struggling to find answers to address the issues??some are postural…due to wrong stick…some are balance and movement…have lost two inches in height due to wrong stick…my spine now curves to the right…and my upper torso is slightly twisted…couple this with the leg weakness etc…it is better for me to stay in the chair…although last year I managed some assisted standing before I got ill…am. it bitter about any of this but that said I make the best of things… am sure the Physios will monitor you which is crucial…and you never know what you need now may be different in the future…am sorry you are still feeling so ill…hang in there and stay positive…ok yes the neuro physio will do all they can and get others involved if necessary…glad the balance is improving…be patient …and give yourself time hun hugs em
hope this is not naughty to ask, but are you able to still work? I have been finished on ill health and I have accepted this is for the best. But without any diagnosis some help is in possible to get even though everything is supposed to be on your physical capabilities, so I was just wondering how you are getting on. again I hope you don’t mind me asking.
I think they are just thinking about helping me with what is going on now whilst I am still being investigated. The wording of the Neuro’s referral was something like “Please could you see this lady to see if you can help with her balance problems whilst we investigate the situation” or something like that. I told them more than once that what I’m really aiming for someone to find out what’s wrong and do something about it!
My head is still all over the place today…I thing the whole thing was a huge wake-up call for me. I just keep thinking how on earth things have been allowed to get to this stage when I have seen so many doctors over the years and have ALWAYS mentioned my balance problems and ‘funny feelings’ in my head to every doctor/chiropractor/nurse/osteopath I’ve ever seen. The staff on Tuesday seemed quite disgusted that I’d received no help so far.
I think what worries me more than anything it all still seems to be getting worse, gradually but also in occasional big, sudden steps, and if this carries on for much longer I am going to be in very big trouble!
Gosh, what a negative post! Sorry folks, I am usually so upbeat and positive!
Catherine - not sure whether you’re asking me or Scoobie, but I’ve been off sick for a year and am being made redundant due to ill health at the end of this month. I haven’t gone down the ESA route yet, but am dreading it. How far have you got applying??
Hey purple… it’s ok to be a bit down…especially as you have been suffering for a long time…with. no real input or answers…am affraid to say I have been there too…and it’s. not right for any patient to be treated like this…sometimes it can take a long time for a dx …sometimes we have to wait even when the medical staff are doing all they can but also people can fall through the cracks…get lost of left which is wrong…this may be due to many factors…not to do with a patient…have you spoken to pals on things? they are very proactive… I left work a few years ago to become self employed on permitted work…it’s been a challenge with all my health and eye probs plus the recession but in the long term it will be the best way…I receive ESA…and it’s ok…give them as much info as possible…update them regularly re symptoms and drs and treatment…I don’t have a formal dx of any sort but my probs have put me in the support group. I would love to work for an employer again but I have faced allot of descrimination despite the laws…and in the end despite my good interviews I decided that you can’t change employers perceptions of disability and work and this in the end is what decides if you get the job…lol take it easy on yourself…perhaps talk to your gp about your feelings…and how all this is affecting you…it’s. normal to feel as you do…the uncertainty of what is causing all this …is. not good Hun but speak to the Physios…also and the OT …they will see you as a whole person…or they should do…I have had to learn many skills over the years…some of them were already within me…some were instinct…and some I had to learn??but Hun you will cope…you will adjust??being overwhelmed by what your body is doing is allot to take on and accept when things seem to getting worse…stay positive…focus on the things you can do…relaxation helped me at times…and doing things I enjoy…when. I can…anything that makes you feel good about yourself…you are still you…whatever happens physically… e x
I’m feeling a lot more positive today, although physically I’m not good. I have decided that I am going to speak to the physio or OT on Tuesday and tell them I am struggling with feeling so ill all the time. I’m not expecting them to be able to do anything, but at least I think they’ll take me seriously and it will at least be in my notes!
I was finished on ill healtth at the end of August. I have applied to get my pension early (51yrs at the mo)but not having any success without diagnosis, so its looking like I will need to wait until I am 55yrs old to get it. I have been claiming Contributory ESA it automatically changed to this while I was still gainfully employed and off sick. It should run out next March. I was sent to ATOS for assessment and failed and recieved a letter in June saying they where going to stop the £71 a week. I decided to appeal mainly becuase I had not yet been put into one of the higher payments becuase I was scared if I failed the appeal I would have to pay it all back (as long as you are on the lower payment then I was told it does not need to be paid back phew). I still have not had a date for the appeal as they are so far behind. But in the meantime I was keeping them updated with any changes like OT making changes at home for me and getting the Ménière’s disease diagnosed a few weeks ago. Still under Neuro but i seem to be a wait and see case with him. Good news though after telling them about the Ménière’s disease they took me seriously and I received a letter confirming the appeal was not going ahead and that they changed the decision in my favour. Yours NI stamps are paid too, unless anybody can tell me different so that helps for state pension later. I hope this helps you xx
Hi Merion Thank you so much for sharing your story. I’m really pleased they say you don’t have to appeal now. I have already made up my mind that I will be refused. I did read somewhere that, if you can get a doctor to write to say that it would be detrimental to your health and/or your recovery to be forced to actively seek work or return to work, then you can get put into the support group without having to have a medical. Not sure if it would be as easy as it sounds, but always worth a try, I suppose!
I am just being moved from two sticks to a 3-wheeled rollator.
This is now a matter of learning to walk all over again.
Note that my main problem is a dropped left foot and an almost useless left leg. My balance problems are relatively trivial.
With the two sticks I tended to take big steps, swinging the left leg out and round so that the FES kicked my foot up.
With the rollator, I have to take small steps (almost an “elderly citizen” shuffle.
But, doing this I can manage about 10-12 steps without the FES switched on, and a lot more when it is.
It was a physio who suggested this, and then produced one for me to try. My first reaction was that it was substantially slower, but felt safer than the sticks. So she put one on order.
Now I am getting used to this in the house - but the idea is that it will live in the car boot, and I will only use the sticks to get to the car and back. OK, so it has a “granny” image, but if it keeps me mobile, and upright …
xx
let us know how you get on… e