For the Ataxia Profile this week we will be learning about the story of Chanda Huy. Chanda is working on trying to adjust and adapt to the diagnosis of Spinocerebellar Ataxia that she received a year ago. The form that she has is hereditary, passed down by her father.
All of the simple things that are a part of everyday life – tasks that she used to do without thought or effort have now become exhausting and take concentration. Like walking, remaining balanced while standing, and speaking clearly. Chanda relates that she has had to trade-in all her fancy and fashionable high-heels for stable sneakers.
The diagnosis has been hard for Chanda and her husband and has been discouraging at times. But Chanda’s husband has been a rock during this first frustrating year and has helped her acquire and maintain a positive outlook. Finding and attending support groups has also been beneficial for Chanda which she refers to as one of the best medicines. Lastly, love and strength shown by Chanda’s family and friends have been priceless. The last year has been a tedious and difficult journey. All the love, strength and support shown to her have been precious to her.
Thank you for your story Chanda Huy. These realities are important for us to reflect on and your openness and honesty is appreciated. The truth is, that those of us who have grown-up with Ataxia, or dealt with it for years often forget that there are people like you that are experiencing these life changes for the first time. It is not insignificant and anything we can do to help and encourage you in your journey – we will do!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.