-
Physio
I am on the waiting list to be on the waiting list for physio.
Once the physios work out that making me go up and down a set of 3 stairs and and a range of other pointless activities designed for oap stroke victims, they sort of dont know what to do with me.
Is ther somewhere I can go to get publish guidelines to give the Physio for ideas on what to do with someone with MD. The physio that I had for a few sessions a number of years back is now retired. she was also qulified in massage and I always found that of great benifit. She would basically do my workout for me, moving my arms, legs but keeping the joints in the correct position so to not create pulls/damages.
I have a feeling from meeting the new physio that they wont really know what to do with me either. and that I will be brushed off with a exercise sheet that I could have googled myself.
Any ideas greatfully received.
On a side note, have a bit of a water lung this week, tried to get resp physio,(drumming on my chest, to It yak it up, kind of thing) and was told to get a ambu bag. is this common. used to find resp physio really relaxing and the easiest way to get the gunk up.
Re: PhysioHi, I have never been advised to get an ambu bag, always had respiratory percussion from either a local physiotherapist or my carers who were trained by the physio. How would the ambu bag help I wonder? Can’t figure it out – would be interested to find out. I have also used a Cough Assist machine to help get rid of gunk but that’s only possible if you can get to a hospital that has one available to use.
In terms of advice on exercises/stretches etc., all I can think of is the advice about physiotherapy for DMD, although a different type, there will be a lot of crossover and will still be useful (you can download from the MDC website) . Maybe someone else can suggest some other resource.
http://www.muscular-dystrophy.org/how_we_help_you/publications?q=PHYSIOTHERAPY&x=30&y=15
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: PhysioHi there, I can completely relate to your situation. It is SO difficult to find a physio who even knows what MD is nevermind what exercises to teach to benefit somebody with it. I do not know what your ability range is but the general things that are advised for MD patients as far as physio goes are the follow; range of motion exercises, swimming/hydrotherapy and gentle stretching. These may seem very general and you may not think they will account to much but this helps keep ppl like us supple and you have to keep in mind the debate of MD + Exercise…that fine line between too little and too much. I also recommend you look into the Neuromuscular Center as they have trained physios specifically for MD patients. You need a referal from one of your drs first but it’s well worth it I hear. I’m in the middle of trying to get a referal myself as a dear person to me recommended the center. Here’s a link http://www.nmcentre.com/ I hope that this is of some help
Re: PhysioI also recommend you look into the Neuromuscular Center
We dont have a neuro centre up in Scotland. hopefully one day we will.
have tried for years to get hydrotherapy but although a local hospital has a pool it doesn’t have funding for the care/help disabled people need to access the service. so baically its only able bodied people with a wee (fixable)sore bit that get to attend. ordinary swimming pools are out of the question as they are too dam cold. the last time I went I could hardly move due to the freezing water.
thanks for replys
Re: PhysioI saw a physio several years ago and although they knew very little about FSH they were very helpful.
It’s now time to revisit the physio. I had a feeling i would go through the same steps as before so took the initiative and got an appointment at the NMC in Cheshire, it’s a long way from the south coast, but I’m hoping they will be able to communicate with the NHS physio down here that I’m waiting to see.
When different groups communicate with each other we should find easier and better ways of moving and living.I,ll let you know how it goes on Monday at the NMC.
Regards
MorganRe: Physio@morgan wrote:
I saw a physio several years ago and although they knew very little about FSH they were very helpful.
It’s now time to revisit the physio. I had a feeling i would go through the same steps as before so took the initiative and got an appointment at the NMC in Cheshire, it’s a long way from the south coast, but I’m hoping they will be able to communicate with the NHS physio down here that I’m waiting to see.
When different groups communicate with each other we should find easier and better ways of moving and living.I,ll let you know how it goes on Monday at the NMC.
Regards
MorganHi Morgan, looking forward to hearing your experience at the NMC. Hope it goes well
Re: PhysioI,ll let you know how it goes on Monday at the NMC.
morgan
how did it go on Monday :?:
Re: PhysioA few months ago I started physio on the NHS. The person who seen me seemed to know a bit about muscle disease and the way FSHD impacted the upper back and shoulders. I have very limited range in my upper body, as I have severe bilateral winged scapula which means my arms have not been above shoulder height, even less, for a very long time, so I was very stiff.
She passively moved my arms above my shoulders, it felt, well good and damn sore at the same time!
. After the session I could not move for a day or so even though it was only basic stretches that I was doing. Next session was 2 weeks later which I was a bit miffed about.
She gave me very simple stretches to do. Basically try and sit up straight keep your neck tall and then pull your chin to the neck. Do this 3 times a couple of times a day. The first few times I was in complete agony but it then got easier to do, still very sore but I could feel the benefit. I was not so tight in my upper back.
The other one was to try and use the muscles I have left in my back to try and pull the shoulder blade back into the body. This is where it got really hard. I literally have no muscle in my upper back and the ones I do have are so overworked that this was near impossible to do. I thought the neck stretches where hard! I could not do this exercise without intense pain and fatigue so I stopped.
The next session the physio said she could see that the shoulder blades where sitting better. The ROM in my left shoulder was marginally better but the right side there was no change. Once again she stretched my arms above my head, I cannot describe how good this feels, if also sore. Now for the next stretches I have to use one of those gym balls, a big ball filled with air. Put the ball on a bed or the sofa place my hand on the ball and move my hand and arm backwards and forwards and to the side. This is where things get complicated. The amount of pain after doing these these stretches was unbelievable.
I think that when the pain is that bad the stretches are doing more harm than good. As we know there is a fine line between doing good and doing damage. I had to stop doing these stretches all together and because now my next appointment is not for another month I can not really talk to anyone about what I should be doing! I thought that I would be having physio every week so I could be monitored, but it seems like they are treating me like I will get better after I have done there standard amount of sessions that a person with a sprained ankle gets.
The other thing is that the physio is only focusing on my upper body but my stomach muscles and left leg muscle are experiencing muscle wasting. I have started to get foot drop and finding it extremly difficult to go up stairs, even walking on flat surfaces I seem to trip up over the tiniest thing. I did mention this but I get no response really about my foot. :evil:
Nearly finished, sorry for the long post
I have a leaflet about the Neuromuscular Center and was interested to see what the outcome of Morgan’s visit was. My regional rep from the MDC also recommended the center but I want to wait and see if it is worth going all that distance. I was also recommended hydro therapy but the nearest hospital that does it is nearly a two hour drive away and an hour in the car does my back in and cant walk for days.Just needed to sound off thanks all
WWRe: PhysioJust needed to sound off thanks all
WWthats cool, some good points in your post. Im looking forward to passive assisted streaches. Hopefully the physio I get will cooperate and not just give me the same old A4 sheet of exercises. would really love hydro therapy but dont see me ever getting the chance of it.
Re: PhysioSeen as this is physio related I thought I would post here rather than start a new thread.
So I was thinking about massage therapy, I know that the odds of getting this on the NHS is slim to none, so, Is there a list or somewhere to get in touch with that gives details of private massage therapist that specialise in muscular dystrophy. I have seen a list on the internet that shows accreteded massage therapist but not what they specialise in. Any help thanks.
WW
Re: PhysioAfternoon
Not sure where the last week has gone, I should have done this a while ago, sorry for the delay and maybe the length!Firstly let me say what an amazing place the NMC is. Not only does it offer physiotherapy for MD sufferers but it’s also a training and design centre which provides, people with MD, computer skills and qualifications which help them get work. It is a charity which is funded by their in-house fundraiser and I believe they sell some of the designs. There was a warm welcoming feeling as soon as I arrived and the fact it isn’t a hospital is wonderful. It’s nice and light with lots of smiley faces everywhere, a nice place to be.
The main room is open planned with, I think, 8 physio beds. There is an amazing amount of equipment ranging from small pedals allowing you to rotate your legs, to beds which move to an up-right position allowing you to stand up.
To tell you a little about myself – I have FSH and am currently experiencing few problems, mainly raising my arms and weak core muscles, generally I function normally and work a full time job in the leisure industry. I wanted to visit so I can track myself over the next few years and see what areas are being affected the most, also I was fed up of attending physio’s that had no experience of MD. At present I don’t need any of the equipment they have, but this will be the first place i go when I do. Saying that, hopefully when I get to that point in life there will be more NMC’s throughout the country.
As this was my first visit I needed to complete an assessment which included questions and several physical tests. It was taken by Jenny who has been there two years and is one of their full time physio’s. It was so nice to not have to explain anything, Jenny knew the boundaries which existed and she had great knowledge of each type of MD. That alone was worth the visit.
The assessment was both pain and stress free and it tracked what movements/ daily routines I struggled with and to what extend: ie, if I could dress myself without help, and did i have problems with putting on socks or removing jumpers.
The physical tests were based on strength resistance and then we timed how long it took to walk ten meters or up & down three steps.Jenny knew exactly what muscles were not performing correctly and was able to give me a number of exercises which have already proved beneficial. I was also supplied with the good old A4 printouts, so it was just like all the other physio’s!
When the assessment was finished I was given the tour and met a number of the staff and other people with MD who were there for treatment. I live far away and won’t be able to make regular visits but it was clear that many people use it on a daily basis and find it hugely beneficial, if I lived closer or there was one down here I would be there all the time.All in all it was great. Great people, great facility and great equipment.
To get an appointment with the NMC you need to get refereed by your GP, but they except people from all over the country. I have informed my aunt about it, her FSH has progressed much further, the only problem is she lives in Scotland and is not sure about the travelling involved.
Hope this has helped in one way or another.
All the best
MorganRe: PhysioThanks for posting about your visit to the NMC. It sounds a brilliant place
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: PhysioRe: Physio
Post by Morgan » 27 Apr 2011, 16:31
sounds like you have a really positive day. I too live in scotland and thought that I wouldnt be able to use the english centres as it was in a different region. will ask my neuro guy about paying a visit. even a one off visit would b better than nothing.
Re: Physioso, Is there a list or somewhere to get in touch with that gives details of private massage therapist that specialise in muscular dystrophy.
is there a group or governing body that regulates the phyio or quailified aromatherapy massage industry. Its just they need to be quailified to do both so mayby the local collages would have recommmendatios from ex students.
just a thought
You must be logged in to reply to this topic.