Thursday, January 29, 2009

finding my ways with frederick's ataxia

actually it is about finding my ways with the circumstances of life, all of them put together, but why i name only frederick's ataxia, it is probably because this one is the biggest challenge that life has given my beloved daughter, to the angel who would have been a pretty n chirpy young girl by now..........she is still pretty, but this FA is torturing her to no limits.......her breathing is becoming more n more difficult, her tongue more paralyzed, but she is stronger than me i suppose.....trying to tell me something,which my senses are not able to decipher...........and when i talk to her, anything and everything , she likes it and one very significant development i can see is , that now she knows that she can do something on her own to get over with a coughing bout or even a seizure..........during such discomforts i have been watching her from a distance and telling her ....mithi will push it hard............and i can see the change in her approach, as earlier she would get annoyed and teary eyed, visibly shaken and extremely exhausted after every such she fights her way through it and though her face gets red n eyes teary due to the impact, she feels relieved after it and contented at her little victory...........i cheer her up and do what she likes the most......kissing all over her face.

i am not trying to write a literary piece, but there is definitely a purpose, writing all this is helping me find new ways...........the most important being, how i learnt to get doing all this writing blogs which earlier i thought was impossible cuz mithi will be neglected and i will not be able to keep undivided attention towards her...............earlier i used to keep her next to my chair and physically touching her with my elbow or feet so that she knows that mama is close to her..........meanwhile typing on the computer and talking to her in between , fearing she might feel isolated or when i am done with her daily chores, i tell her that it is time to rest for mithi and mama will do her work.......she understands when i tell her that mama will come to you whenever she calls..........sometimes she makes a sound to call me n sometimes it is just a harried breathing pattern that i have to catch, but now she knows that mama will come when she needs her.

i just pray this bloody FA does not give her any more pain and that she becomes stronger to fight with purpose to write all this is partially directed towards other people who are affected with FA or have a family member who is affected with it.......i find many people who google search for frederick's ataxia, come to this blog and read it......i really would like to exchange ideas and solutions and suggestions with them as we can create a dialogue between us and may get benefited....i request all those people to post a comment on this blog and let me know more.....any suggestions are more than welcome.......i would love to get sugestions where i am wrong or what else can be done to improve the living conditions of a FA patient..............querries are also welcome.
i take a great care of nutrition in her food and intend to share what type of food i give to her............which is keeping her as comfortable as can be.........the problems of a sedentary patient like her are many and i would really like to make a link with others in the same situation.............i would like to know how it can be dealt with in a better way or if i may help others...............please let me know.........


  1. Sangeeth you are such an inspiration to all of us.Your patience and endurance amazes me ,I pray God relieves your little angel of the terrible pain and disabilities.

  2. Sangeeta, I'm really sorry that both your lovely angel and yourself have to go through this. I really really wish if some miracle happens and she feels better.

  3. It's Madhuram again. See if this is of any help to you. (this is in secunderabad, India)

  4. i had a sister that had fa she died last year sorry sorry to hear your little angel as fa it is so terriable its not fair hope u and your daughter all the best will keep reading your sight all the best just make sure she has all u can give and all the love in the world she deserves it.xxps u are such an inspration i will pray for u and your daughter

  5. hi anonymous
    i am glad to hear from you , this is the first time anybody having FA in the family has responded , i actually need more people to come n interact with is really very painful to see helplessly the advancing disease, but i am trying my best to keep her as happy as can be. thankyou for coming forward .

  6. Hello Sangeeta, I am currently caring for a woman in her 70s in the USA who has FA. This disease is new to me so I am learning very slowly, and want to thank you for your blog. Please know that I am thinking of you, praying for you and your little one, and thank God that your daughter has such a devoted, caring mother.

    Also wanted to let you know that I saw online where Johns Hopkins Hospital has recently established a wing for the study and treatment of Ataxia. You can see the press release here:

  7. thankyou jan for your prayers n appreciation.......can we share the challenges face by a FA patient as you are also caring for one yourself, may be we can share some practical tips needed for their better quality of life....thanks again for communicating.

  8. This blog is an inspiration Sangeeta. Thank You for sharing.

  9. thankyou IHM
    have been bowled over by your views recently...
    this blog ( homealone ) has been a grounding for me...dunno is..

  10. Hi Sangeeta, I lost my mother to FA almost 3 years ago at the age of 46 having lived with it for many years, in fact since I was a young child myself (I am now in my mid twenties). She came from a large family of 9 and unfortunately her brother also died last year from it, and she has one sister still surviving FA. I am so sorry to hear such a young girl has to go through this, I know it's incredibly hard to care for her and to see her suffer.

    I will say to you: do not be afraid or ashamed to ask for or accept help from others to care for her as the worst thing you can do is make yourself ill by overdoing it. I watched my father almost fade away while trying to take care of my mother and also bring up my me and my sister.

    Keep your daughter comfortable, and don't forget that she is still in there. She can still see and hear whats going on around her, and I know from first hand experience that it is incredibly frustrating for her not to be able to communicate with you or others, but I can see she is a strong person and she has massive courage. I don't think you can do wrong by her, but make sure to look after yourself too, it is very important and very easy to forget.

    I have hage respect for anybody who has to care for and cope with FA or anything like it. You are a fantastic mother to your daughter and I wish you and your daughter all the very best and hope that she does not have to suffer the pain of this terrible disease for long. - Dara

  11. thank you very much Dara for all this......such comments give me immense strength which i cannot explain in words......yes i will keep myself in good health n that's a promise.
    and yes , i am praying that my angel gets freedom from this pain...

  12. I have a sister with FA she was diagnosed at the age of 8. She is now 40. Over the years, I saw her having problems walking, and talking. At the age of 40, she doesn't verbalize. She tires alot. She can't do anything for herself-she is totally dependant on family. She can't do the simple things We take foregranted. Feed her self, hold a newspaper, hold a flower etc...All her thoughts are inside her. There is no communication devices available for her to express herself. She is on a feeding tube now.At one time her weight was 110 pounds, now it is 68pounds.We are hoping she will gain some weight. I try to give her a positive life. I plan vacations around her.I take her to the beach, to Disney World etc... It gives her something to look foreward too. We don't know what the future will be for her.We are taking it one day at a time.

  13. Thanks Anonymous for connecting....

    I can understand well how the patient feels n how helpless we feel when we can't do anything to understand , i have seen that even a small effort gives tremendous results and we should keep trying to find out ways to do whatever is possible.....

    You are doing very good by being with her as much as possible, being family members we can only understand the tiniest of discomfort or happiness visible on their face .

    Feeding is a big problem i know but you just have to keep giving her all the happiness she can hold , that will be precious for her.

    Your comment really touched my heart, i pray for her ....for all her pain to vanish n she be happy with the family around.

  14. Hi there, I just wanted to comment briefly. I have a very dear friend with FA. She is coming in to her 50's. She is severely affected. She is also beautiful, bright, cheerful and lives a very full life with the help of 24 hr support workers. I want to encourage you and your beautiful daughter, and lift you up in prayer. As I pray for my friend daily. God be with you.