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.

The 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 treatment options.

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.