In December 2010, Alana Sinclair was diagnosed with Multiple Sclerosis (MS) following the birth of her third child.
The 108 Mile Ranch resident says she is finding that there really is not a lot of support in the community for people with MS.
"I would like to introduce a support group to the community because it is not only going to support me but other people in the community who are also coping with MS."
It would be nice to connect with others in a similar situation, she adds.
Being new to coping with this disease and diagnosed at age 27 while living in Kamloops, Alana explains she began to experience numbness and tingling in her hands and arms.
She could not figure out why and when she went to the hospital to get checked out, she was told that it was probably a pinched nerve from her pregnancy and pregnancy weight gain. However, she did not gain weight, but instead lost weight during her pregnancy and was considered to be high risk.
There was a bleed found in the placenta, and at the time, doctors were unsure if she would be able to carry her baby to full term. Her son was delivered 10 weeks early and spent 45 days in hospital.
Alana says he is her "miracle baby." After delivering him, she became very sick with a form of meningitis.
She went to the Kamloops hospital three different times because she felt there was something seriously wrong. Alana says the doctors told her it was just a severe cold she was going through. However, she stressed that something didn't feel right and that something was very wrong going on.
"I began to stumble, fall up stairs and my balance was off."
So, the doctors sent her for a MRI scan and that was when they found the lesions on her brain, which were causing the MS. The disease was not diagnosed until she went to the MS clinic in Vancouver, where she was finally diagnosed with Relapsing Remitting MS (RRMS).
According to the MS Society website, RRMS is a course of MS characterized by unpredictable but clearly defined episodes during which new symptoms appear, or existing ones get worse. These "episodes" are also known as attacks, exacerbations, or flare-ups.
Typically attacks come on over a few hours to a few days, and last anywhere from 48 hours to a few months. The hallmark of RRMS is the recovery, or "remission" that occurs between attacks.
Between attacks, recovery is complete, or nearly complete to pre-attack function, and this recovery persists for a clear period of time. The time between attacks is variable, but can be months or even years. About 85 per cent of people have RRMS at the time of diagnosis.
Alana says the MS is holding her back from being a mom to her children who are living with her parents, and she goes to see them as often as possible.
"I have very good supporting parents. One of the hardest things was to realize my kids should be with my parents; they needed to be in a better place to be taken care of as I'm having difficulty in taking care of myself.
"I am wanting to focus on my children but I can't because I am stuck in a body that is not co-operating, a body that is not my own.
"So, how am I able to take care of three children? I could not provide them what they deserve and that is the main reason why they are with my family."
Some of her mornings start normal, Alana says, but she never knows how her days will go.
One day, she moves through her day with reasonable normality, Alana adds, but she has difficulty with reading and memory, so she works around this by writing many things down instead of trying to remember it all.
The next day she could have tremors and spends the day resting, drifting in and out of sleep feeling extremely exhausted and not understanding why. On her tougher days, Alana says she deals with a lot of lower back pain and she is pretty much done for the day.
Currently, she is also unable to drive.
Alana notes everybody with MS is affected differently, and it is hard to understand what the full spectrum of the symptoms is from one person to the next. Someone could be diagnosed with RRMS, which is what Alana has, and someone else, who has been going through RRMS, may go for lengthy time periods without any symptoms. Then another can be diagnosed and go downhill very quickly.
Currently, she is receiving weekly visits from home support. Alana says her parents have been very supportive all the way along, as she copes with her various daily changes in her symptoms.
Moving back to 100 Mile House, she found there were not any MS support groups in the area, and being afflicted with this disease and symptoms that change on a daily basis, Alana says she would find it helpful for herself to meet with other people who are also coping with this disease and to learn more about what helps others cope on a daily basis.
The MS Society is putting on a free (donations gratefully excepted) conference in Kamloops with guest speakers - a doctor, a patient and a caregiver - on June 2 from 2 to 5 p.m. at the Desert Gardens Community Centre.
For more information, contact Cyndi Lion at cyndi.lion@mssociety.ca.
Alana met with Cyndi from the MS Society at a meeting held in 100 Mile House. Unfortunately, this meeting is only on once a year.
This is why Alana would like to see a group meet more regularly somewhere in 100 Mile House, for an hour or so, possibly once or twice per month.
Contact Alana at 250-644-3615 for more information about starting a local group.
Folks reach the Kamloops Chapter of the MS Society at info.kamloops@mssociety.ca.