To discover that someone in your life is suffering from Spinocerebellar Ataxia is devastating. But you are not alone. Thousands of people around the world, are diagnosed with this condition every year. Sufferers, carers and research professionals share their knowledge and experience with all who need it.
There are support sites that can bring family and friends together like the following: www.caringbridge.org
Spinocerebellar Ataxia on Youtube
It may help to view Spinocerebellar Ataxia YouTube videos of sufferers sharing their stories and giving insight into dealing with their difficulties. Some of the following may help:
- Making the Best of It: Living with Sporadic Spinocerebellar Ataxia
- You Can Survive: Cerebellar Ataxia
- Struggle of Living – Aya’s Spinocerebellar Ataxia
- Spinocerebellar Ataxia Disease
There are two types of Spinocerebella Ataxia inherited and sporadic.
Hereditary Spinocerebellar Ataxia is caused by an inherited, altered gene and is characterised by movement problems, uncoordinated balance, stiff muscles and often sufferers have difficulty with eye control. Sometimes the condition causes problems processing thoughts, learning and remembering. These symptoms often appear early in adulthood but can begin anytime from childhood to late adulthood. An affected person usually inherits the altered gene from a parent but this is not always the case. The distorted gene can miss a generation. This knowledge can be disturbing and you may feel a need to have your family tested.
Genetics Home Reference
The results of thorough investigation into genetics are listed on this site:
Another type of Sporadic Spinocerebellar Ataxia is caused by damage to the brain. There is no genetic link but your loved one may have been involved in an accident. Symptoms are the same as the hereditary type, nerve cells are damaged, there is impaired balance and muscle loss, coordination is affected.
Spinocerebellar Ataxia is a progressive disease that manifests itself usually before 25 years. The research community is working to alliviate symptoms to improve the life quality life of affected people. For information for people with disabilities look at www.myhandicap.com.
Spinocerebellar Ataxia remains stable for a number of years, but as it progresses it affects the central nervous system and a patient may have to use a wheelchair. Progress is slow and insidious. Breakdown is gradual, sufferers become more unsteady on their feet. Their sense of touch deteriorates.
Department of Neurology Division of Neurogenetics
Researchers in Washington, are conducting genetic research and testing:
Read their online booklet for sound information on the condition.
There are drug developments that are good news for suffers and their carers. Current drugs prescribed are powerful antioxidants but other drugs are undergoing trials, drugs that will slow down the progression of deterioration and make lives easier.
There is help for all involved with Spinocerebellar Ataxia. Sufferers and caregivers can find answers and places that help on the internet.
Southern California, Movement Disorder Specialists
A website from Southern California offers an online booklet that clarifies movement disorders. Called Southern California, Movement Disorder Specialists – they offer, besides educational information, they also offer online Nutritional Supplements. Their website follows: