About Kama Soles (M.A.), 2013 Canadian Ataxia Conference Homage Recipient:

Kama Soles is one of the 2013 Canadian Ataxia Conference Homage Recipents. A documentary video about her inspiring life and battles with Ataxia will be played on the Wolf Performance Hall's movie screen as a part of the "Limitless with Limitations" show begining at 5pm on Saturday October 12th 2013.

The Kama Soles Story: Life in the Slow Lane

This is the story of Kama Soles – a fun-loving, intelligent, hardworking, ambitious, young woman who is determined to succeed at whatever she does. Sounds like your typical carefree Canadian woman, right? Not exactly.

Kama was born with a rare genetic, progressive condition called Friedreich’s Ataxia. Friedreich's ataxia or FA is a rare, hereditary neuromuscular disease in which there is degeneration of the nerves of the spinal cord, cerebellum, and the nerves carrying sensation and controlling motor ability to all parts of the body. This constantly progresses and gets worse as the brain is not regulating the body's posture and the strength and direction of limb movements.

It is a recessive disorder, meaning that the affected person has inherited two genes for the disorder, one from each parent. Often the affected person is the only such individual in a family. Kama is the only person with FA in her family.

One single gene is the cause. Gene X25 was discovered in 1996 on chromosome 9. FA results from a mutation (alteration or change produced in the gene and preventing it from functioning normally) in the encoding gene for a protein called "frataxin". This causes an inability to coordinate the movements of the voluntary muscles attributable to the premature death of the nervous cells which control balance and coordination. This decrease in frataxin brings about an excessive accumulation of iron on the level of the cells, which results in a poor functioning of the mitochondria particularly on the level of the nervous system and the heart. Mitochondria are the structures which generate energy on the cellular level.

It showed up when she was about age ten – the first symptom was a slight stagger in her walk, which progressed throughout her teens and affecting her balance and ability to walk – she had the appearance of someone who is intoxicated. The symptoms are slow and always getting worse. Many patients reach a plateau in symptoms in the patient's early adulthood, such as Kama did, and fortunately, her FA seemed to stay relatively stable throughout her early to mid 20’s. now in her 30’s, Kama’s condition has progressed to where she now has generalized muscular weakness (more so in the legs), the loss of certain reflexes, problems of elocution and articulation (difficult speech with an explosive, slow voice).and poor coordination of the lower and upper limbs, including clumsiness of the hand which results in a difficulty to grasp objects.

Her FA also causes her to have vision impairment, hearing impairment, a curvature of the spine (scoliosis), high plantar arches (pes cavus deformity of the foot), a heart disorder called hypertrophic cardiomyopathy (thickening of the left ventricle) and severe fatigue- her energy levels vary greatly from day to day. Intelligence and mental ability are preserved, leaving an active and often very intelligent mind trapped in a severely disabled body.

Kama was born “healthy” on May 30, 1977 in the small city of Prince Albert, Saskatchewan. She grew up on a farm just outside of PA with her parents and older sister Dawn. Kama was a fairly active child, always playing outside with her cousins, bowling, playing softball, visiting her grandparents’, dancing or riding around on her sister’s minibike.

When she was 10, she fell off a haystack and broke her arm and never fully recovered. Her teacher suspected an inner ear infection and so began the almost 2-year journey towards her diagnosis – which included 2 separate visits to the Sick Children’s Hospital in Toronto. Despite her early diagnosis her parents always maintained high expectations for her, and this in turn instilled a drive for independence in her. Their approach gave her high expectations for herself. She never gave up, simply shifted her priorities from the physical to the social and academic.

She still remained active although much of her activities now took place inside; throughout high school she was involved in Junior Achievement, Model United Nations, Drama Club, Yearbook, and Peer Counseling. She was also enrolled in the Students` of High Potential program. She graduated high school in 1995 with an ``A``-pin (honour grades) and a handful of awards and scholarships. During this time she would use a scooter at school and then walk at home and use a manual wheelchair to go out with friends.

After completing her first year of university in PA, she moved to Saskatoon to continue her education. At the University of Saskatchewan she became involved with disability Student Services, wrote for the Sheaf – the university’s newspaper, took some graduate-level courses, and was on a psychology-related Academic team that placed second in a national competition in Halifax. During this time, she was living on her own, and her FA seemed to have hit a plateau and she took full advantage of it.

She received her BA Honours in psychology in 2002, while working full-time at the the North Saskatchewan Independent Living Centre (NSILC), a community-based, non-profit cross-disability organization that encourages people with disabilities, to develop the tools necessary to foster independence. Her position involved a lot of contact with the community, but also provided a number of opportunities for research and development. She acquired an expertise in affordable and accessible housing through both a graduate-level practicum in applied social psychology and a research internship conducting a needs assessment on affordable, accessible housing with NSILC and the Community-University Institute for Social Research (CUISR).

During this period she led the creation of a housing co-op for people with disabilities, the Saskatoon Independent Living Co-operative (SILC), which intended to allow people with disabilities to have a chance at home ownership. she worked to incorporate SILC, recruited members, and developed a number of proposals for potential housing projects backed by several levels of government and the community.

She also did other volunteer tasks for women with disabilities, people who were homeless or who faced housing problems, or other with social justice interests, including organizing DAWNing Saskatoon (DisAbled Women's Network Saskatoon support group), the Saskatchewan Advisory Council on Disability Issues, the Saskatoon Community Plan for Homelessness and Housing advisory committee, DAWN Canada (Disabled Women's Network Canada), and many others.

Then in 2003, she went to work for CUISR, though she continued her involvement with the housing co-op and other involvements. She was awarded a Woman of Distinction award from NSILC and the Saskatchewan Voice of People with Disabilities and the Saskatchewan Centennial Medal by the Government of Saskatchewan in 2005 in recognition of her community involvement.

During this time, Kama transitioned from living on her own to living in an assisted-living group home called Cheshire Homes of Saskatoon. Because of the move, and having to undergo some surgeries on her feet, she had to cut down most of her community involvement and resign from CUISR.. Plus, her FA was progressing, causing a lot of fatigue, so she needed a break for a bit.

But her idea of a break is a bit different than most…

Kama recognized the potential that the co-operative model has to empower people with disabilities, so her experience with SILC inspired her, in 2006, to do an Interdisciplinary Studies Master’s thesis through the Centre for the Study of Co-operatives at the University of Saskatchewan.

She received a number of scholarships to do this, and was able to travel to and present at many conferences across Canada. She was able to do a little fieldwork but ended up conducting the majority of her research via email. She received her MA in October 2010.

After getting her MA, she started to get bored, so she sought out her fellow FAers on Facebook, and created a group called Canadians with Friedreich’s Ataxia who are hoping to meet this summer in Toronto. Her computer is her main means of communication and is very important to her. While establishing contacts and forming the group she found out about the Canadian Association for Familial Ataxias (CAFA).

She was asked to be the Saskatchewan representative for CAFA and was tasked to form a provincial support group for people with all different kinds of ataxia as well as organize fundraising events, including the first annual Saskatoon Walk’n’roll on September 23, 2012. On the education front, she hopes to start her PhD in the near future.

Kama has also rediscovered the necessity of physical exercise – although to a much less extent than in her past. She performs a daily Adaptive Yoga routine – it’s based on a wheelchair yoga routine that she adapted even more to fit her own abilities. She also does an hour a day on her stationary arm-bike.

Kama now lives at the Sherbrooke Community Centre. There she participates in various types of physiotherapy,meditation, art, and swimming. Kama takes a “Mindful Meditation” class, featuring her own Adaptive Yoga. She also gets advice from an occupational therapist and has discovered her inner artist by participating in the Art Program.

Kama’s FA has progressed quickly over the past few years going from living on her own to assisted living to eventually a nursing home ...it never gets easier, but it helps knowing you’re not alone.

FA has definitely slowed her down over the years, but she will continue to try to move forward – to do whatever she can, no matter how slowly. She can’t just sit and watch her body deteriorate while her spirit remains strong. Any movement is better than none in her opinion.

Kama does not allow herself to be defined by her diagnosis. No one would blame her if she gave up, but she will never quit trying to better who she is and the world around her- no matter how slowly. She tries to make an impact on those who allow her into their lives. And she hopes she has done so here – with you.

Links: http://saskatchewan.lacaf.org/, http://saskatchewanwalk.lacaf.org/.