Appointments - we want them but we fear them

Long awaited appointment today for B with her neurologist. It's been postponed several times the last few months. B has been seeing this neurologist since she was 5. When her first MRI showed what looked like degeneration of her cerebellum. And she was with us on our journey to diagnosis, the years of testing and anxiety. And now she is like a friend you see once or twice a year for a catch up and coffee (without the coffee though).

Today's appointment was not revolutionary, just practical decisions to make a difference to Beth hopefully in a positive way.

Her headaches - you know my worry over these. They aren't getting any better and really impacting her. Dr C has decided to try on a different drug - Topiramate. This is used for epilepsy in higher doses but is effective for migraines in a lower dose. Also some evidence it helps with tremors and neuropathy pain in feet and hands. So we will give it a go.

Her feet - she has been experiencing burning sensation after swimming and pain, blisters on tops of her toes and now there is some swelling around her ankles. Apparently it is not oedema (or doesn't look like it) but Dr C says its definitely all to do with the advancing neuropathy. So now we need to look at daily elevation of her feet, support socks, and she will ask the lymphoedema nurses at St Georges for any management advice.

Other stuff - due to her frequent coughing during drinking, she will arrange for a swallow study to be done to see if she is aspirating into her lungs. And a bunch of other stuff including additional vitamins to be taken and seeing the community podiatrist for care of her feet during the holidays.

and the nice stuff? This afternoon, B and I are going to have our hair cut and blow dried together. Pure mother and daughter time. I love it.