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Ataxia Support Network

Friedrich Ataxia will this be the last summer Nenas mobile


#1

Every day depression gets stronger and stronger watching Nena get weaker for a long time we could hide things but I'm terrified of what will happen In her first year of high school next month I'm terrified of her giving up and going to assistive device but the thought of her falling and breaking her neck is also un bearable ,,,luckily my awesome girl is only 8 so no symptoms yet Nenas weakness seems worse than it should be twice this summer she hasn't gotten out of bed for 24 hour stretches and naturally her weakness is made worse by this


#2

Is her doctor providing guidance, Nena's mom? What does the doctor say about Nena's situation?


#3

I do not feel that the doctor ane I are on the same page at all


#4

Perhaps you can get a second opinion? We have a number of members in NH. Perhaps one of them can help recommend another doctor?

http://www.livingwithataxia.org/profiles/members/search?name=&country=&location=NH&q23=&q40=&q25=&q26=&q38=&q39=


#5

My love and sincere emotion is with you and your family..much to be done with Ataxia! take care..Kim..


#6

As a person with FA, I highly recommend the use of assisted devices. Unfortunately the use of a walker, wheelchair, etc. is inevitable, so transitioning from walking to assisted device is a natural, but not easy, part of life.


#7

I am also a big believer in assistive devices.ithink it is far better to be able to do stuff. I remember an occupational therapist telling me there is no right way to do stuff. I think of that often as I struggle to figure out a way to do what I want. Assistive devices like walkers and wheelchairs come with disadvantages that sometimes feel overwhelming, but they have still more advantages. It really isn’t so bad to have others know there is a disability. Sometimes others can be very helpful.

On another matter, I hope the original poster got help for his depression. The best way to start is usually to talk to the PCP.