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Ataxia UK
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Physio sessions

Hi all,

I'm interested in how many people have regular physio sessions in the UK and how many sessions are you allowed in a year?

I don't know how the NHS works for things like this. Does anyone pay and have private sessions as they can't get enough on NHS?

Thanks

Xxx

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when I was first diagnosed in 2016 I was offered 6 sessions of physiotherapy on the NHS. I didn't feel that this was adequate for my needs so I now visit a private neurophysiotherapist on a monthly basis. Kay.

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Hi, no 6 sessions doesn't sound like enough to me either! Do the private sessions cost you very much?

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they cost £38 for an hour's session which I think is very reasonable.

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Thanks x

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Hello piglet3 that is great news that you have continued with motivating the brain. I am sure it will improve good blood flow strengthen the brain pattern, all in all, the joint / muscle will be supple. The key is don't let the brain rule you as this will turn to stale. It's your determination that it will not beat me I am in control with positive motivation. Well done and great to know you are keeping to an excellent routine. Enjoy your day, take care.

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Hi, Interesting, I wasn't aware of physio sessions being limited. Since I was diagnosed in October I have seen the physio 3 times on a weekly basis, my next appointment is on the 9th which will be a month. I am waiting to move and when that happens I'm going to try Pilates. Hope this helps and good luck

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Don't know how many in numbers one is allowed,but my physio said that the could not keep coming and that I should be left alone but she did say if i needed some more she would come back again

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I had 6 sessions of physio on the nhs, was told if my condition worsened,I could go back.

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Hi WW

I have had 3 sessions of Clinical Pilates on the nhs but don’t know how many I’ll get. Although I don’t think they are doing a lot my sister said I walk better... 😘

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They are maybe helping more than you realise, if your sister said you're walking seems better xx

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I had three months worth, which for me made a massive change to my life as I hardly ever left home. She gave me exercises that I had to do everyday and saw me twice then once a week. We spent a lot of time outside and I ended up with a crutch rather than a stick for balance. With her I crossed a main road opposite my house for the first time in nearly two years. The way it was left was pretty open and she was willing to come back anytime. As far as I am aware it is still open and that was over a year ago now. I cross that main road everyday now and walk about a mile, even if I do sometimes fall over!

Denise

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Well done,that’s fantastic, I understand completely about how hard it is to cross roads!!

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Wow that's fantastic that you can now walk that far 😁 xx

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My husband saw the physio on Monday , she went through some exercises with him that he can do at home . She also said our local lesuire centre would get in touch . They rang yesterday to offer an appointment today . When we go my husband will be shown which equipment to use and how to use it . He will be given a card and be able to go whenever he likes . This is a free service and I’m really impressed and grateful . The only slight difficulty is that as he has had his licence taken away due to his conditions , i will have to take him each time inbtween work.

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I am really interested in how the scheme works are you able to tell more? I have found in my local area if you don't ask then they are never going to tell you!

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Hi wibbly. I believe you are allowed 6 sessions on the NHS, whether per year or not I dont know. You may be able to get more if your gp thinks it may help, you will need to discuss with them.

There is a charity called the NeuroMuscular Centre, Winsford, Cheshire nmcentre.com/

that will assess your condition and advise you. It is free (a charity so donations probably welcome). It may be worth a trip, or at least a chat. Their website states they are in contact with other places around the country.

Hope this helps :)

GOOD LUCK

Steve

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Wow that's worth knowing. Thanks xx

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Hi ww-wibblywobbly!

We do not live in the UK.

First:

A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations eleven overcome are often accompanied by some increase in the PSP symptoms and a decrease in the quality of life.

These are our experiences regarding physical exercises.

We hired a group of physiotherapists specialized in movement problems with neurological origin.

After a month, they defined an exercise protocol and taught us how to do it (They are not difficult). Since then we do them through a trained person who helps us.

This is a summary of the protocol:

Exercise 6 days a week: passive in bed (move all major muscles) and active (helped by 1 or 2 people). At least go up and down 50 steps (odd days), walk 200-300 meters (even days). Speech therapy exercises and exercises of mouth and ocular muscles. Then she needs to rest at least 30 minutes. Swimming can be an excellent exercise if ... the chosen style is done correctly. It is advisable to start with a monitor to ensure that the movements are correct.

• We have seen that, with an electric toothbrush of the muscles around the mouth (inside and outside) and a good hydration (moisturizers for skin and liquids by mouth) help to maintain the face muscles in good shape.

• In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by their own means, they should do it, even if it takes more time. With some help if necessary.

Hugs and luck.

Luis

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You can get it through your GP

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Hello, ww-wibbly-wobbly We have to re-educate the brain that even holding something is an exercise. By gripping a tennis ball sitting down straight arm bring forward. Start off with 10 times each arm. Every other day adds +1 extra. Everyone as different stages but just that allows the brain to grip better reach, hold better. Set targets everyone as the limits, The legs also no matter how severe if you have the right swimwear just float in the swimming pool slowly little movements of legs. This also helps with hips, arms, shoulders this again the right wear that floats it helps to re-educate the brain. It all depends on your situation you just need to get the advice. The brain is an ailment that you command it is you in control, not the brain controlling you. I am in a wheelchair spinal severely blind, deaf, mute with a very rare 3 in the world with my condition. I have a lip reader who kindly types for me. They communicate by my palm giving me informal taps to finger type language. My life from working one day overnight I have then developed the gait, blurry, It all progressed. I knew that the throwing in the towel was not for me, I took a different way to live and make what I got work for me. On daily bases light exercise, it was by chance that I was asked if I would like ago on a specialised wheelchair yacht and had a chance to steer. After 18 months enjoying the fresh air touching the face, I felt unbelievable and enjoying life to the full. It went on to a well-known Microsoft heard I wanted to do a solo around the UK challenge. The navigation was overcome by the same principle as car navigation. This was programmed in this went on to return crossing sailing the channel. Next year will be my next challenge the Atlantic crossing which a team will be following me with SKY TV are going to do a documentary on Ataxia and following my journey nothing is impossible. As you see yes people say you can't do this or that but I have the control to know what I want what I do no matter how tiny it may be you are in control. 2021 my future target the journey will continue with around the world sailing. After that who knows. I have made so many wonderful friends that I would never have thought to meet. Please understand we are all human if it moves to use it or lose it. Around a park is a good example to make a start and swimming in supervised family hands it is a start. Please look out for 2019 live day to day diary and live questions for half hour daily while sailing. More information at a later date, all proceeds that have and are sponsoring me all the proceeds are in ataxia research finding more cures. Take care and hope it as inspired you and many more reading this around the world.

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Wow that's amazing. You are amazing. Please let us all know when this will be shown on TV xx

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After 6 NHS physio sessions it stopped. Recently after a broken hip, I got 6 more rehab sessions at a physio gym. The physio leader extended these sessions to 10 in total. Learn your own exercises from the physio sessions, and do these in your own time.

As a follow up to the physio gym I now visit local council gym weekly at a subsidised rate. This exercises the parts I ignore. Most of the other participants are stroke victims. Part of the appeal is getting out of the house.

Look to see what your local leisure centre offer to rehab people.

Not a fan of physio, great believer in learning from others and doing it yourself.

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It is good to keep to what stage and capability FFNicky and everyone is different. The key to improvement stick with it with continues light exercises this will pay off at a later stage with loose the muscle joints. It is a matter of common sense of what capabilities you are at and set a target that is something you know is possible. It is a matter of slowly improving the brain and controlling your brain not what the brain doubts want but positive control of yourself to control it yourself, you are in the control seat. Keep with it and see the difference it is not a chore it is being in control with a positive attitude. Have a lovely day stay positive, take care.

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I completely agree with you. And feel that I'm seeing the results now of years of steady repetitive exercises as well as things I do at home, for exampe i make greeting cards for my fine motor skills, I can do more ckeaning in the house, I can do more in the garden, and i can socialise for longer. Things have definitely become easier and my recovery time is getting shorter.

Ataxia is hard work, but our efforts do pay off eventually.

Love Alison x

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As time goes on the progress of the human body will improve younger of the body. The strength of the inner body will be far refreshed than letting the body dwindle to joint muscle conditions. ww-wibbly-wobbly you are a credit in what you do and like I keep telling people it all boils down to re-educating the brain that you are in control of your brain and body. The time when the brain is in control is making excuses for getting into a situation I'm not bothering today this is a cop-out. This is giving in to the control of the brain and self-step back that is the persons choice to let the body become stiff muscular. We are human and we have to keep the human body supple and continue motivating your abilities. Take care to have a lovely day to all who read this.

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I have Otago exercises, which are good. I copied a link. They look easy but are not. Phttps://www.huntingdonshire.gov.uk/media/1458/otago-home-exercise-programme-small.pdf

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I've just looked these up. They don't look easy to me. Some of them i def couldnt do - esp removing the chair!! I'd be on the floor! Some of these exercises are built into my regular routine. Not a daily routine, cos when i was doing exercises daily i was too tired to do anything else. One of the specialists told me, that we have to live, have fun, do the things we enjoy life, so not to exercise daily. Keep some energy for other things too. This is a lifetime illness. So have to do things how it works for us. Some of the best advice I've had :)

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I don’t get any physio, I also tried private, but they never got back to me.

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Oh no :(

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