Slow down the pace

General
1

After receiving physical rehabilitation in hospital I have now learned that doing everything at a slower pace has benefitted me greatly.

Before I was diagnosed with Cerebellar Ataxia I was a very active and outgoing person. I was always used to getting involved in physical activities including; walking, swimming, D.I.Y and manual labour hard grafting 'hands on' jobs. Now that I am unable to do all the things I was so used to doing in the past I am now at a lost cause! I knew my balance and coordination was becoming probematic and began to stagger when I walked. This eventually led me to losing the two jobs I had at that time.

After hospital rehabilitation as an in-patient I have learned to slow down my pace. Physiotherapy and hand therapy techniques were very beneficial to me in order to regain muscle strength in all parts of my body. However I found that learning to slow down the pace (for me) was the most useful part in my rehabilitation.

Before I was admitted into hospital I walked with a broad based stompping action, which may have given the impression that my ataxia is sensory in nature (not being able to know where the body is in space). I believe I have proven this to be not the case as I can now walk (albeit still staggered) without a foot stomping action. This had worried me over the course of a year as I thought my incoordination and balance was becoming out of control. By learning to slow down on everything I do I now feel more secure and confident. I think that the symptoms I have mentioned may have been related to my past lifestyle as being a very active person. In other words I think the condition has had a severe psychological impact on my wellbeing. Can anyone else empathyse with my thinking on this?

2

Certainly can Iain, this became obvious to me when I was recommended to use walk stick.

I am now using two fischer sticks and can walk quite 'normally' with them.

The thing about speed is that when you fall, the impact causes greater injury which is why I have had broken finger and wrist on different occasions.

If I try to walk without sticks, I toddle and look [and feel] really strange.

thanks for sharing Iain - why were you admitted to hospital?

Best wishes, Patsy

1 Like
3

I was admitted into hospital Patsy because both my doctor and Neurologist were concerned about some of the symptoms I was showing. The Neurologist stated to me that there were conflicting issues relating to some of my symptoms. For example, I had signs of past pointing and tremor in my right hand but I could easily reach up to switch a light on. There was also concern about the weakening of the muscles on all of my limbs.

The hospital programme consisted of intensive physiotherapy and hand therapy to regain muscle strength and control in all of my limbs. On six occasions during my five week stay I had talking sessions with a Psychologist which also included cognitive techniques on how I think. I was also assessed a few times by an Occupational Therapist and came home with a very handy kettle tipper. Overall it was a very worthwhile experience which I have benefitted from extremely well.

Simmilar to yourself Patsy I now make sure I use a stable walking frame. Without it I find that I tend to be more unstable and walk with a wide base gait. When I use a walking frame I can walk very smoothly providing I move slowly. I feel much safer and more confident than I used to. The best thing about keeping to this habit is that I very seldom have stumbles and falls. In fact I can't remember the last time I had a fall. I have also regained much better control to my right hand. My left side is the weakest but I am right handed which makes life easier for me. Although my right hand is not too bad I still on occasions tend to reach out for things and miss or knock things over while trying to grab hold of something. This happens at unexpected moments which is very annoying.

I'm now on a constant 'go slow'. Whats the hurry anyway. There's no need for me to rush about.

Patsy said:

Certainly can Iain, this became obvious to me when I was recommended to use walk stick.

I am now using two fischer sticks and can walk quite 'normally' with them.

The thing about speed is that when you fall, the impact causes greater injury which is why I have had broken finger and wrist on different occasions.

If I try to walk without sticks, I toddle and look [and feel] really strange.

thanks for sharing Iain - why were you admitted to hospital?

Best wishes, Patsy

4

Hello Iain

I take things slowly and try always to think about what I am going to do and how I am going to do it. Some things take me an age, I could do with some patience from Andrew (he has the patience of a knat and that's being generous) but there you go.

The only thing that improves my walking and balance is horse-riding,it is quite remarkable. I do quite a lot of work without stirrups, this gives the body a workout. It sort of stetches you without pulling, its quite hard to describe.

At home I use a trolley and I lurch from room to room using anything in my path to help. Walls, door frames etc.

Like you I was very active prior to CA kicking in. There wasn't enough hours in the day. I do think this has a psychological impact, although it is hard to accept or admit. A good example a person I knew but have not seen since before CA contacted me to ask that I teach her Son to dance. I told her I couldn't and explained about Ataxia. It was several days ago but I still think about it and I realise how much I miss not dancing.

Never mind we can't change was has happened but we can make it hard for it to win.

Take care

Carol

5

Yes many people say how they mourn the loss of 'previous life' and overcoming this is a tough climb.

I dont know how I would have adjusted without online friends and my support group members.

At my age - I will soon be 69 - family, even Ken, think I should expect my body to decline but before surgery to straighten my foot, I could run and jump. My hair hasnt turned grey and I used to love socialising.

Iain I feel in a sense you are fortunate to have had all that help and guidance but it must be very disappointing too - did they give you a definitive diagnosis?

I have just been told CA although my muscles are lacking strength - I do wii fit exercises most days but couldnt imagine standing on stirrups.

Take care, Patsy x

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I believe horseriding can be a good way to help balance Carol. I can imagine sitting on a moving horse being bounced up and down. I think this would be good for the muscles as they are stretched and relaxed continuously. Quick movements without moving eh!

I didn't find the experience disapointing at all Patsy. I understand the annoyance of not been given a definitive diagnosis but even if I did have, it wouldn't mean that it's curable. Before leaving the hospital I signed a form which had details of my progression during my stay. My diagnosis at the bottom said, 'Cerebellar Atrophy, Raynauds Phenomenon, Ataxic'. I don't have a definitive diagnosis but a general one instead. A Professor in Neurology who I'd seen previously told me that Crebellar Atrophy/degeneration is a diagnosis just like Parkinsons in the same sense that there hasn't been a cause found.

7

Yes Iain, I can understand your acceptance - my diagnostic journey took years and I kept clinging onto the hope that there might me some treatment for me. I must admit it would have been nice to get it over with in 5 weeks but you must have been in a very bad way for them to take you into hospital so I dont envy you in any way whatsoever.

I too have Raynauds for which I have been prescribed a drug amplodomine [or something like that] for about 20 years now.

I was treated for Lupus for a year and then they changed their minds.

I consider my CA to be relatively mild and thank my blessing for that.

Take care, Patsy

8

What a good topic

take things in your own time

I was aware of the pace of daily living when I came back from Gambia (X3 and Kenya X1) both "laid back, NO RUSH

where as UK its RUSH RUSH RUSH

WHY does the pace of life differ so much ?

9

lol yes money does account for a lot but.... ????

On reflection, the pace of life has always been too fast for me - especially when I was WP secretary in the city - commuting every day.

Retired life certainly suits me better and keeps things in perspective.

Patsy

10

I never knew we could go for in-patient help for physio, although I wouldn't want to be separated from Inca for 5 weeks so It wouldn't work for me personally,

I having been doing a program of vestibular rehabilitation for a few years now at home.. my Neurophysio started me off with some exercises and I used the original wii fit game.. when I first started I couldn't do many of them and was real effort to manage 30 mins.

Now have the wii fit plus and can do over half of them and some other games too. I've even managed boxercise from my chair recently and pilates floor exercises for core have been great for strengthening my back and its reduced pain. Doing it every day sometimes several sessions a day I've also lost weight in the process.. One and half stone since June (21lbs) which I am pleased with as I had originally got over weight (over 12 stone and size 20).. yesterday got in size 14 for first time in years so I was thrilled!

I'm hoping I will really see the difference when I go xmas shopping with a friend and have to use manual chair.. last year was a real struggle and took me nearly a week to recover from, even though my friend had to push me some of the way.. I hope to be able to do it all myself this year as its all flat inside... still 4 hours self propelling is a long time and have no large area thats completely flat and smooth to practice here beforehand... so just have to cross my fingers and hope its a good day for me physically.

11

When I first began my physio programme I too was unable to do most of the excersises. This was mainly because my muscles were very weak and my limbs would tremble (intention tremor) during movements. I was told by the Physio that the best way to overcome the tremor was to get into the habit of slow movements and determination. For example; one excersise was to kneel with arms and hands flat on a very soft non-slip mat and stretch one leg out till its straight. I found this extremely difficult as I would imediately lose balance trying to stretch the leg out too quickly and fall over. It took me a while (days) trying it slow but I eventually got there. The key factors were to stretch the leg out slowly then hold the leg out straight for at least five seconds before returning it back to the kneeling position. I had to follow the same procedure for all the excersises I did. I was amazed to see a great reduction in the tremors I was displaying. I had to do loads of other leg and stomach excersises but I'm not sure what they were all called so I'll not elaborate on this.

After about two weeks I realised that the faster I would try and walk the more I would shake and stomp. I noticed this moreso when someone came to visit me. As the person was leaving I remebered that I had something else to say to her and grabbed my walker and tried to catch her up. All I could remember was staggering and stompping trying to get to her. I got into trouble by nursing staff who shouted 'SLOW DOWN YOU'R GOING TO HAVE AN ACCIDENT!' Since then I have taught myself to keep to a slow pace at all times. This technique might not suit everyone especially those who have busy daily schedules. But I always say to myself that my own safety and wellbeing is paramount.

12

nothing to add but my admiration for you guys - hope that doesnt sound patronising .. and my eternal gratitude to Kati for getting me wii-ing ;o) I loved my wii-fit but my wii fit plus is fantastically enjoyable - can share with hubby and grandchildren too.

Whenever we have been away for a few days, my muscles stiffen up.

patsy xx

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Hi Iain

I was given that exercise too as part of my daily routine but is hard as like you I overbalance and fall over luckily on the bed but it is getting bettter. It is my least favouriite exercise. What i find so hard to accept is the person i used to compared with now. I try to be positive but I get bad days where I just feel cross with it.All my hobbies in the past involved mobility so every day i am reminded of what i can't do any longer. It is a bad habit I know but we can't be positive all the time.I do try and take things too fast.The other day someone was holding my arm down a hill but i was going so fast. I had to explain that my natural breaking mechnisms were faulty.

When i was a teacher there were always deadlines and torgets to meet.Now I cannot work I cant get out of the habit of rushing asif there's no tomorrow.The i have to ask myself what is the rush and slow down.There'no rush but its adjustihng isn't it.Keep up the physio if it helps.I walk about two hours a day with rollator but the doggy has adjusted and gets some exercise and so do I.

Marie

14

I was very physical too.. fell walking, cycling, karate, walk family dog 2-3 times a day and work etc. I found it an hard transition at first going from that to wheelchair within 18 months.. it was a bit of shock to the system!

Patsy.. I'm glad your still wii-ing happily everday!! ;0) xx

15

well almost every day - sometimes miss weekends when Ken is using tv. xx

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Hi Carol

I thought I would try this riding thing. I have put my name down on a waiting list with a local groupof Riding for the Disabled. I would need some help getting u[p and would need a verry docile pony. I thought as i cannot walk unaided any more I may be able to ride bridleways with a group as i struggle with gates with all the paraphanalia I have to carry.How do you think it has benefitted you ? I can only look longingly at woodland paths now as my rollator gets stuck in the mud frequently and I overbalance trying to get it out. Also 'im so restricted.

Marie

Carol Gow said:

Hello Iain

I take things slowly and try always to think about what I am going to do and how I am going to do it. Some things take me an age, I could do with some patience from Andrew (he has the patience of a knat and that's being generous) but there you go.

The only thing that improves my walking and balance is horse-riding,it is quite remarkable. I do quite a lot of work without stirrups, this gives the body a workout. It sort of stetches you without pulling, its quite hard to describe.

At home I use a trolley and I lurch from room to room using anything in my path to help. Walls, door frames etc.

Like you I was very active prior to CA kicking in. There wasn't enough hours in the day. I do think this has a psychological impact, although it is hard to accept or admit. A good example a person I knew but have not seen since before CA contacted me to ask that I teach her Son to dance. I told her I couldn't and explained about Ataxia. It was several days ago but I still think about it and I realise how much I miss not dancing.

Never mind we can't change was has happened but we can make it hard for it to win.

Take care

Carol

17

Hello Marie

I can only speak for me. I would describe horse-riding as a wonderful work-out, one where all your muscles are relaxed. After each session walking is not so difficult. The sense of freedom is marvellous and for the time you are on horse back you feel normal (whatever that is). I always say my horse gives me my life back.If you have never been on a horse the first time will be strange. Don't be put off. They say the horse emulates the way we wallk and move that is why it is so good for us.

I will tell you what I do, it may help. In fact I can do better, here is a link to our school, have a look http://www.ridingatthebrook.co.uk/

Mounting and dismounting worried me, I wondered how I was going to do it, but it is fine. When I mount the horse comes into the arena and I am on a raised platform so effectively I am level with the saddle. I put one foot in the left hand stirrup and my right leg is put across the saddle by the helpers and once in place I put the right foot into the stirrup, I take the reins and off we go. When I dismount it is not conventional but it works and most importantly it doesn't hurt the horse. My feet come out of the stirrups, the horse lowers her head/neck my right leg is helped across the horses neck then I slide down the saddle until I make contact with he ground. Through it all there are people to help, you are never left on your own.

We do exercises on horse-back, these are designed for balance and breathing. We throw items in a bucket this helps coordination. We have to weave between poles and cones. The first time I did the poles the front was perfect but I forgot the rear end!! Poor horse,she must have thought another dough-nose.

Posture is very important a straight back with bent knees and shoulder, hip and heel in a line together. Practise on a dining room chair, I do.I was awarded a certificate and rosette for my sitting, and work without sirrups, the latter is very good for you, it sort of stretches you.I was told to think of your legs and feet like a wet towel, all limp.

You cannot ride without a safety helmet but the school will lend you one. If you like it and decide to stay I would recommend a pair of jodhpurs, they stop any rubbing of the lower leg, a pair of riding gloves and a riding jacket. I can advise you where to go.

It goes without saying your own helmet is a good investment.

Riding is not for the faint hearted but it is the best thing ever. Just think you connect with an animal that is probably five times bigger than you and perhaps twenty five times as strong.

The horses deserve respect,always remember that and you will not go wrong. For yourself you need patience, some days will not go right and you will wonder if it is worth it. The answer is 'yes'

It takes a long time to get it right - so what?

Good for you for even thinking about it

I will help all I can.

Take care

Carol.

Marie Turner said:

Hi Carol

I thought I would try this riding thing. I have put my name down on a waiting list with a local groupof Riding for the Disabled. I would need some help getting u[p and would need a verry docile pony. I thought as i cannot walk unaided any more I may be able to ride bridleways with a group as i struggle with gates with all the paraphanalia I have to carry.How do you think it has benefitted you ? I can only look longingly at woodland paths now as my rollator gets stuck in the mud frequently and I overbalance trying to get it out. Also 'im so restricted.

Marie

Carol Gow said:

Hello Iain

I take things slowly and try always to think about what I am going to do and how I am going to do it. Some things take me an age, I could do with some patience from Andrew (he has the patience of a knat and that's being generous) but there you go.

The only thing that improves my walking and balance is horse-riding,it is quite remarkable. I do quite a lot of work without stirrups, this gives the body a workout. It sort of stetches you without pulling, its quite hard to describe.

At home I use a trolley and I lurch from room to room using anything in my path to help. Walls, door frames etc.

Like you I was very active prior to CA kicking in. There wasn't enough hours in the day. I do think this has a psychological impact, although it is hard to accept or admit. A good example a person I knew but have not seen since before CA contacted me to ask that I teach her Son to dance. I told her I couldn't and explained about Ataxia. It was several days ago but I still think about it and I realise how much I miss not dancing.

Never mind we can't change was has happened but we can make it hard for it to win.

Take care

Carol

18

Hi Carol

Not sure if i am usingthis site right. Thanks for all your advice about the Riding. I am going to look round my local group on thurs.Will let u know how it goes.

Marie

ps quite excited about it all