Connect
30 year old with Axonal neuropathy
30 year old grandaughter diagnosed with axonal neuropathy has been in nursing home since Sept 2024 due to requiring total care and im unable to care for her. It has been a long scary time. She had no use of her hands arms and on down. She has gained the use of her hands and can now feed herself. We cannot afford 24/7 care and quite frankly dont know that we can trust leople to show up for their shift. There does not seem to be any help of any kind in Illinois. Suggestions???
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Hello @sandy47, So sorry to hear about your granddaughters diagnosis requiring total care. I know that has to be difficult for you also. Have you checked with the Illinois Department of Human Services about their Home Services Program? - https://www.dhs.state.il.us/page.aspx?item=29738
Hello,
I’m so sorry about your granddaughter’s diagnosis with axonal peripheral neuropathy. I have the same thing with the large fibers and it’s idiopathic. The suggestion by another member about home services is a great one.
However, the way you described the symptoms as losing the use of her limbs and lower body then regaining the use of her hands made me think that it possibly can be something else than her diagnosis. In my case, it’s a progressive condition with no cure but possible treatments to slow it down. I never thought it could hit the way you described the situation with your granddaughter than regain some functions.
Here in Ohio, we have a government department called JOB AND FAMILY SERVICES. There may be something similar in your area.
I wish your granddaughter and you the best as this is absolutely a nightmare to deal with and so sorry again.
Take care and have a serene rest of your week.