[patinkc]

Does anyone else out there have the same disease. My husband was finally diagnosed with it last year. He uses a walker and sometimes a power chair. And is never in pain. It just seems to be his balance and speech that is affected. Please respond I feel I am alone in this struggle

[NeuroNixed Craig]

Hi Pat,

You are alone and then you are NOT alone. It's just that there are not that many people out there with this diagnosis and then this forum is just a tiny slice of the medical community so you really can't make any real judgments.

I'm sorry to hear about your husband's diagnosis but at least now you know what you're dealing with based on his symptoms. He sounds as if he is still getting around pretty well with minimal symptoms.

I am pretty much home bound using a power wheelchair at least 75% of the time and forearm crutches the rest of the time. I use a transportable 3 wheel power scooter outside the home. It fits right in the trunk of my car and gives me and my wife a great deal of freedom.

I'm on 15 Rx meds several are narcotic pain meds. Pain is a real issue with me in addition to disorientation, imbalance, involuntary body movements in the form of dyskensia. I fall down quite often, slurred and scanning speech, loss of concentration, double and blurred vision.

It took them 10 years of diagnoses and misdiagnoses before they finally got it right. My prognoses is the worst but I don't let it slow me down.

Share with us a little of your story and his journey to this diagnosis.