September 23 Get-Together
Identifying Our Needs
The meeting on Sept. 23rd was focused on pin-pointing the main challenges
faced by group members living with dystonia. This topic was chosen to help
the group develop an information booklet on dystonia that addresses these
concerns. Several obstacles were common in each person's experience.
Individuals struggled wih the emotional impact of the disease. One of
the emotions expressed was anger. Anger was felt due to having the disease
itself and as a result of having to fight for a diagnosis, treatment and
financial support. Members also expressed their fears. There was uncertainty
regarding the cause of the illness, the potential for worsening of the
condition and the continued effectiveness of Botox injections. Frustration
and depression were also experienced. Dealing with the negative attitudes
of others toward the disease was difficult for group members and left them
feeling misunderstood and isolated.
Physical limitations imposed by the disease were recognized. Participants
discussed the fact that they do not have the same motivation to be involved
in previously enjoyed activities and often lack of the mobility due to
pain and fatigue. The impact that this change in lifestyle imposed and
the effect this had on family life was addressed by spouses as well.
disease affects individuals financially. Some members had to give up their
jobs due to the illness. This major life adjustment brought stress and
financial hardship. Lack of financial resources were roadblocks to treatment.
The costs of physiotherapy sessions and visits to psychologists were prohibative.
The cost of travel to receive medical care away from home also limited
Dealing with the health care system was a challenge. Misdiagnosis or
lack of diagnosis by healthcare professionals were hurdles faced by some
group members. Members were concerned with the lack of knowledge doctors
had with regard to the disease. They felt that they had limited access
to information on up-to-date treatment methods. Problems with medication
and treatment effectiveness were highlighted. Some group members were prescribed
inappropriate medication for their condition; others received Botox injections
that were ineffective at controlling their symptoms. Some members wanted
to receive physiotherapy treatment but could not simply because there are
not enough trained professionals in their vicinity and the waiting lists
for covered physiotherapy are sometimes as long as two years. Some experienced
difficulties dealing with health insurance companies that refused to cover
Botox injections for treatment of dystonia after Botox began being used
for cosmetic purposes.
Two things are becoming evident as people with dystonia discuss their
needs and challenges. First is to ensure that all that has been learned
about dystonia over the last 25 years is made readily available to those
who are diagnosed with the disorder. This includes up-to-date information
on treatments available and on the other elements that are integral to
the treatment of dystonia, such as physical therapy, active social living,
supportive care, patient education, etc. This is where the project to publish
a dystonia handbook comes in. Secondly, there are still many obstacles
to getting all the help necessary, especially as concerns financial support,
up-to-date medical counselling and specialized complementary therapies,
which are either unavailable or costly.