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2. Shoshana and Maureen are two distinct characters. Shoshana is outgoing, fast paced, engaged. Maureen, on the other hand, is rather calm and easy going. I admire Shoshana’s tenacity in making sure she has everything she needs, demonstrating a go-getter attitude that is not deterred by the bureaucracy of the health or social services in the UK.  Maureen can be admired for having a wholesome character who accepts the cards she’s been dealt in life and calmly looks forwards to each day anew. In a way, Maureen is lucky she has been well provided by her local authority as well as the health services. She is thankful for everything she has received in a most humble manner that only made me more modest as she speaks of her life with MS. Shoshana, on the other hand, speaks of her life with MS as a series of failures by the health service and paints a rather grim picture of what the situation can be like for someone with MS in the UK:

   a

   If it’s not given to you, be prepared to go and get it. Even when it is obvious to you, you may still have to fight to justify it to the health service or your local council. If a service is not available in your area, move to another one if you can.

   a

   Although Shoshana and Maureen have two different approaches and perspectives on their lives with MS, they have one strikingly similar attitude towards life in general that is quite representative of the British psyche: the ability, in any eventuality, to keep calm and carry on. 

   a

   From the Under Pressure website:

   a

   http://www.underpressureproject.eu/web/country-profile/united-kingdom

   a

   There is wide variation across the UK both in access to and quality of MS services. A government report in 2012 identified major problems, including differences in access to services, long wait for diagnosis, poor information and a lack of care coordination.

   a

   A good fact is that the law protects people remaining in employment after diagnosis and requesting flexible working conditions. But discriminatory attitudes and poor awareness of MS unseen symptoms, such as fatigue, often threaten working relations.

   a

   Two main disability benefits exist for people with MS but significant cuts in funding are expected; and concerns have grown about how eligibility for those benefits will be determined. Also, care and support services are available across the UK but costs are variable.

3. 

   Reading, United Kingdom, 12/2011 • Maureen Pankhurst was diagnosed with MS almost 50 years ago, at age 20. Although confined to a wheelchair by her mid-30s, her condition has progressed quite slowly. Now living with her second husband, Neil, she quietly asserts her need to be as independent as possible. She continues to do most of the cooking but when she needs some heavy lifting help, Neil will be at hand.

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     Reading, United Kingdom, 12/2011 • Maureen Pankhurst was diagnosed with MS almost 50 years ago, at age 20. Although confined to a wheelchair by her mid-30s, her condition has progressed quite slowly. Now living with her second husband, Neil, she quietly asserts her need to be as independent as possible. She continues to do most of the cooking but when she needs some heavy lifting help, Neil will be at hand.

   • 2

     Reading, United Kingdom, 12/2011 • A retired engineer, Neil Pankhurst quickly adapts to the vast array of equipment needed by his wife Maureen, who has been confined to a wheelchair since before they were married 15 years ago. Both credit the local health council with being sensitive to Maureen’s changing needs, providing a specialised bed and mattress, a hoist and a lift between floors in their home. The Council also installed a ramp to the garden.

   • 3

     Reading, United Kingdom, 12/2011 • Back from grocery shopping, Neil Pankhurst (back) puts canned goods in the cupboard while Maureen begins preparing dinner. Maureen has been living with MS for almost 50 years; she and Neil have been married for just 15. “It’s a challenge to be disabled and still assert whatever independence you have left,” says Maureen. “At first, Neil wanted to take care of everything for me. I had to tell him that I still need to do what I can. Over time, we’ve learned to balance things out.”

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     Hove, United Kingdom, 11/2011 • Sorting pills for the week ahead is part of Shoshana Pezaro’s weekend routine.

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     Hove, United Kingdom, 11/2011 • Just after lunch, Shoshana Pezaro practices “fatigue management”. If she has many appointments and meetings schedules in one week, she tries to rest most of the previous and following weeks. Shoshana felt relief when finally diagnosed with MS: it created a framework in which she could look to the future with a better understanding of what she could and could not do. She is now a public advocate for better care and opportunities for PwMS.

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     Hove, United Kingdom, 11/2011 • Shoshana Pezaro having tea and a cigarrette at her home in Hove with Jayne Flanigan, her carer on Mondays. Shoshana suspects she began to show MS symptoms in her early youth before her teens. It has taken her around 7 years to get diagnosed. After doctors confirmed that she has MS, she says she felt relieved because she could now look forwards to the future knowing what she could and could not do. She is now a public advocate for better care and opportunities for people with MS.

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     Hove, United Kingdom, 11/2011 • Shoshana Pezzaro (32) thought of herself as never having outgrown the awkward stage of being a teen. UK health policy requires that people select a family doctor in the area where they live. Because Shoshana moved often while in university, each odd symptom or minor injury from a clumsy fall was overseen by different doctor. Unaware that there might be a link between numb legs and loss of colour vision, she never told doctors about her past medical history. Some 10 years passed between her first symptom and her diagnosis.

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     Reading, United Kingdom, 12/2011 • Maureen Pankhurst (70) has lived with MS for 50 years, and in the same house almost as long. Over time, the local health council has adapted the house to meet her changing needs. Maureen is grateful to be living in a country with good social services as her experience has been relatively smooth compared to other people with disabilities. She has, pretty much, been well taken care of by her local council.

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     Reading, United Kingdom, 12/2011 • Neil Pankhurst “manages” much of the day-to-day work of taking care of his wife Maureen, who is now confined to a wheelchair because of MS. The couple aims to be modest in their demands on the local health council.

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     Reading, United Kingdom, 12/2011 • Almost everything takes more time and effort once one becomes confined to a wheelchair. When preparing for bed, Maureen Pankhurst first transfers from her wheelchair to a toilet-type of chair on which she has spread a fabric harness. Once the harness straps are attached, Neil manipulates the electric lifter to complete the transfer into bed.

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     Reading, United Kingdom, 12/2011 • Maureen Pankhurst diving in the hyperberic chamber at the Berkshire MS Treatment Centre. Maureen and the others would often dive in the chamber once a week. Although many people with MS feel the positive benefits of a dive, others don't. Many think this should be a treatment offered by the NHS, making it available to everyone with MS without paying privately, but lack of research places hyperberic treatment in the 'alternative medicine' category in the UK.

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     Reading, United Kingdom, 12/2011 • Once lifted out of her wheelchair and strapped around her legs, Maureen Pankhurst can use her upper-body strength to hold herself upright while leaning on a stretching device. She will be kept in a standing position for 20 to 30 minutes. This “passive exercise” is important to blood circulation, good functioning of the digestive system and stretching muscles that remain contracted while in a sitting position.