The Perils of Ignorance

By the time I was 27 years old in 1991, I had had AS for 16 years although I had only been diagnosed for 8 years.  

I had been living in New Zealand for nearly 4 years, working as a physiotherapist in different parts of the country.  At this point, I was living in beautiful Takaka in the north of the South Island.  I had been pursuing a very active lifestyle and I had learnt to live with recurrent pain determined not to let this hold me back.   Pursuits included mountain Climbing, Canoeing, and Windsurfing. I had also made friends with a local dolphin and we would play regularly together off the beach at Onekaka.  Life was going swimmingly and I had no intention of that changing.  Two more months to go and I would gain NZ citizenship.  My dream was nearly a reality. 

One day, I had the misfortune of being offered milk straight from a cow (via a jug!) and with no idea of the consequences, I drank it.  It was warm and fairly unpalatable.  This little sip was to change the course of my life forever.  

Within 48 hours, I was laid up in bed with swollen knees and ankles.  I felt really ill and I suffered from abdominal pain and diarrhoea.  One of my eyes fogged over with uveitis but I had no idea that this was serious.  Takaka was full of well meaning locals and doctors who had never come across a case like mine.  It meant that I had to endure bad advice, enemas, special diets, the lot. After 3 weeks and no improvement, my twin brother (who also has AS) was despatched to bring me home.  My heart ached as I left the country of my dreams. 

It took me the best part of 2 years to recover and for most of that time, I was living back at home with my parents which was not easy.  Active disease, pain and lack of sleep made me depressed.    I had lost my friends, my independence, my income, and my active lifestyle.  It took me almost a year to walk without crutches and another year before I could work and live independently. 

Why had this happened? 

I had contracted Campylobacter from the unpasteurised milk.  Not only had my life radically changed, but 2 years later, I was diagnosed with post-infective Crohns disease. 

Why am I telling you this?

If I had been warned about the possible consequences of being exposed to unpasteurised milk products this would not have happened and  my life would have taken a very different path. I believe that not enough information is given to AS patients about the risk of developing a reactive arthritis when exposed to common bacterial such as Campylobacter and Salmonella.  Perhaps this should be a subject that is shared more widely with patients not just by the medical staff but by health professionals too. Please spread the word!

In the next instalment, I would like to share the positive side that this experience has had on my life. 

Juliette

BSR Conference 2018, Liverpool 1st-3rd May

Tuesday lunchtime: already lots if highlights from the conference and only one sixth of the way through. We've had some information on work in SpA from the BSRBR-AS register - the poster / abstract made it as one of the "Jewels in the Crown" at conference, presented earlier this morning. They compared a cohort of AS on biologics vs a cohort not on biologics. Using the WPAI as an outcome measure the data extraction has found those on biologics had greater improvements in presenteeismand overal activity impairment; improvememnts for presenteeism were similar for both groups. 
We've seen the creeping progress of the Escape-Pain programme as it aims to see as many as 50% of those in the Uk with knee OA go through one of it's education ans exercise groups. To hit as many targets as possible Prof Mike Hurley has been knocking on a lot of doors and it looks like progress is now more rapid, look out for a programme near you run by exercise instructors in local exercise facilities, or opt to run one in house ideally staffed by well established physiotherapy assistants (he suggests at band 4 level). Really impressive reuslts from the programme, but challenges to getting it adopted across the country. We've seen how this kind of programme fits into a 4-tiered approach to physical activity in rheumatic diseases, from the broad public health messgaes all the way to one-to-one tailored physiotherapy input.

Will

Portfolio Careers in Physiotherapy

When I was asked to contribute a piece to the AStretch website this week I was happy to. Having been a committee member for 3 years I had seen the resources of AStretch grow and grow to provide support to clinicians interested in Spondyloarthritis (AS). I just had to look at my own diary and decide on when I could do this.

Then it dawned on me that my working week is made up of ‘many different bits’ and when put together they make up a whole …..to me more interesting than 1 job……… maybe that was worth writing about!

6 months ago…a respected colleague of mine asked if I would speak to an audience of multiprofessionals at a conference about my ‘Portfolio Career’. My genuine first question was:
‘What is a Portfolio Career?'
A Portfolio career is … instead of working a traditional full-time job, you work multiple part-time jobs (including part-time employment, temporary jobs, freelancing, and self-employment) with different employers that when combined are the equivalent of a full-time position. Portfolio careers are usually built around a collection of skills and interests, though the only consistent theme is one of career self-management. 
If you’re still interested ……….read on here.
Mel

Why Tai Chi in Axial Spondyloarthritis?

I have been teaching Tai Chi to this patient group for more than fifteen years; the thing that strikes me is how much they enjoy it and how it enables them to increase their function very quickly.

Why should this be? certainly not magic!!

If we think about the symptoms that most of these people experience, pain, stiffness, postural changes, fatigue, sometimes reduced chest expansion and general mobility (walking).

It is generally agreed that exercise has a beneficial effect on these symptoms.

“I was afraid to go out, my pain had become intolerable and I was afraid of falling. The Tai Chi classes have given me a reason to get out of bed on a Monday morning, I now go for a walk after class and at six weeks I can now manage two hours after the forty-minute class, thank you”.

This lady had obviously been struggling for some time and had tried many other forms of exercise, swimming and daily strenghtening and stretching, often recommenend in Spondyloarthritis and also afford benefits such as improved mobility, muscle strength and subsequent pain and fatigue management.

However, these exercises do not fully address the issue of balance.

Balance is the ability of the body to remain steady in a chosen position; to move smoothly and safely through small body adjustments. Postural control requires complex interactions within the musculoskeletal system, sensory and cognitive systems. Joint stiffness at spinal, hip, knee and ankle joints reduces the body’s ability to right itself and reduces proprioceptive awareness. Postural changes also affect balance due to the alteration in the centre of gravity. Ankylosing Spondylitis patients have been found to have a poorer balance in comparison to healthy subjects and it is recommended that postural awareness be included in early treatment plans.

So, we get back to this lady and her fear of falling, a fear of falling is one of the biggest predictors of a fall, and the increased propensity to osteoporosis in this patient group will increase the fracture risk. Inactivity reduces one’s ability to compensate and contributes to other problems, including loss of bone and muscle mass, heart disease, and obesity as well as social isolation.

Tai Chi is practiced in a normal balanced standing position, constant movement of the limbs and weight transference improves flexibility and strength in the lower limbs particularly around the knees and ankles has a positive effect on proprioception and balance reactions and on circulatory systems to joints muscles and vital organs. Co-ordinating arm movements challenges balance and improves positional awareness giving better sense of position in space, over time this is translated into daily activities. Slow repetitive movement helps to re-educate neural pathways improving the system interactions and therefore normal movement patterns.

What else? Well; this lady obviously enjoyed her Monday morning classes, certainly social interaction can have a positive psychological effect which cannot be overplayed. Tai Chi is a “mindful” exercise. Participants are encouraged to concentrate on the here and now and only on their breathing and development of their movements. This can have a calming and relaxing effect which in turn aids concentration and memory which improves pain and fatigue. Of course, the inclusion of breathing exercise throughout the programme has the added value of increasing chest expansion and vital capacity.

In short Tai Chi is an integrated form of exercise which can be included in exercise prescription at any stage of the disease.

Sue

Singing

I have always enjoyed singing. At school we made records (we are talking about the 70s), sang in concerts and managed to get on Songs of Praise! Over the years wherever I lived, I joined a choir or operatic society and performed in various shows.

One day a female Barbershop Chorus called Spinnaker Chorus came to my town and they sang acapella style (without sheet music) in four-part harmony. I listened and marvelled at the sound. Their faces expressed the passion of the song, their bodies swayed with the music and they stood tall. What fabulous postures they all had. To top it all, they really looked like they were enjoying themselves! I joined up immediately. That was 10 years ago.

Since joining Spinnaker Chorus ( www.spinnakerchorus.co.uk ) I have never looked back. At last, I was taught how to sing effectively. Using the mouth, larynx, facial muscles, rib cage and good posture, we are taught how to perfect the sound. Then in time to the music, and maintaining our posture, we move with the rhythm. The work out begins. For some of the songs choreographed moves increase the work out still further. We learn how to breathe, holding onto the breath throughout a phrase, then snatching a breath in unison at certain intervals. By the end of the song, the rib cage has moved to its limit and we are breathless from the aerobic nature of the exercise.

There have been articles written about singing and its positive effect on our physical and mental health. The release of endorphins certainly plays its part, the work out another. So too does being part of a group of people with the same passion. If you are thinking about singing in a choir or a chorus, it has to be worth a try. The physical, emotional and psychological benefits can be dazzling.

Juliette

The power of the Voice

Having been diagnosed with a Chronic life changing condition is not an easy thing to accept.

One of my hobbies has always been music, when my lungs became a problem I decided to take up singing seriously. I sat my theory exams with young children. I had better mention that at this time I was 60 years old. For the singing exam I waited patiently with these youngsters who were brimming with confidence. Me? I was shaking in my shoes. However, I passed all my exams with distinction. I did notice as I studied and practiced during those hours, was that my pain became less pronounced, I became so focused.

I still belong to a choir “The Melody Makers” we practice once a week. I’ve found that I have gone to practice feeling unwell and in pain. Once I start singing the pain recedes, it becomes less dominant. It does make me feel tired but when I get home I am able to totally relax.

I find it is not just the music that helps it is also contact with other people. Many of the choir members have got physical problems but there love of music seems to help.

After finding how much my music had helped me to control my pain I joined other groups, art and a swimming club. The time spent with all these groups I actually feel normal. All I have to do is prepare for each activity in advance and realise there is a small price to pay; the next day I rest.

Jan.

Bollywood Dancing and Ankylosing Spondylitis (AS)

Dance is reported as the UK’s fastest growing art form with more than 4.8 million people regularly attending community dance groups each year in England alone. One added advantage in dancing is that while you’re having fun moving to music and meeting new people, you’re getting all the health benefits of a good workout.

As a physiotherapist I strongly feel regular dancing is great for maintaining strong bones, improving posture and muscle strength, increasing balance and co-ordination, beating stress levels and losing weight.

Bollywood dancing: Bollywood dancing stems from the Indian film industry and has increased in popularity throughout the world since the beginning of the 20th century. Bollywood dance is known for being upbeat; it blends the unique traditional Indian dance forms with the modern western hip-hop and jazz dance styles.

Bollywood and AS: My Husband Raj is a music/dance lover and a choreographer, using our whole family effort over the past 5 years we have conducted few local Bollywood programmes. Grimsby NASS group member and Treasurer Jeanne Murray attended our local Bollywood programme and expressed interest in including some dance routines at our NASS group. The members enjoyed the 5 minutes dance work-out and evaluated the session to be different, easy to exercise, enjoyable, fun-filling and did not report any adverse effects. We gradually started including Zumba and line dance forms, we plan to include few more routines in the future.

Big High five to the Grimsby NASS group members! Big Cheers to all the Bollywood dance lovers.

Susimala

Laughter and the love of life

A few weeks ago I had a conversation with a colleague about a patient of hers who I had met in the hydrotherapy pool. This patient had presented in the department suffering from long-term musculoskeletal disease and chronic pain. She was morose and lacking in motivation both with exercise and socially, in fact she rarely left the house. Following initial assessment and treatment she was referred for a course of hydrotherapy.

This lady struck up a friendship with a fellow patient attending the same treatment session as they travelled together on the same hospital transport. This pair soon became the life and soul of the sessions, encouraging other patients and creating havoc and amusement in equal measure. On review, her physiotherapist was amazed at the change in this lady, her posture and physicality had improved dramatically along with her sense of well being and her ability to manage her chronic condition. She is continuing to socialise and exercise with her new friend.

What had brought about this dramatic change? The magic warm water and exercise, skilfully taught by her physiotherapist? Or, the power of friendship, interacting, sharing, offloading and laughing with another human being?

Sue

About us

AStretch is a not for profit organisation; our main aim is to provide a co-ordinated approach to the planning and delivery of education and best practice. Also to support physiotherapists working with people who have Axial Spondyloarthritis (AxSpA) and Ankylosing Spondylitis (AS).

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