It's been a journey, that't for sure!
For me it began with a trip to the Neurologist with my Mom in 2007. I was taking her there for a routine appointment and the doc asked me to do some coordination and balance tests....which I failed...lol. Who knew that I could not walk a straight line (heel to toe) to save my life?
Following that appointment my balance, coordination and vision issues kicked into high gear. I developed Nystagmus as a side effect of the Ataxia. Mine is an "up beat" Nystagmus which shakes everything up and down rapidly... In actual fact, it's my eyes that bounce. The world stays still :-). I see triple am nauseated and require a cane or wheel chair in extreme situations. (That is to say when I do NOT take my medication or am stressed or very tired).
Fatigue and stress are my primary triggers. As it is episodic I can never be sure when an attack will happen. It is vital for me to ensure I rest and have little stress. I also try to stay fit, I find that I am more mentally, emotionally and spiritually balanced when my body is in shape. Plus, it's a great way to blow off some frustration!
I'm blessed that I have a tremendous medical team here. I work with a Neurologist, Neuro-ophthalmologist and my family Physician,.
With trial and error we discovered a drug "3,4 Diaminopyridine" that treats the Nystagmus. So long as I take it I don't require a cane or Wheel chair. That said, there are days when I don't go out. I still battle with weakness, fatigue and in-coordination daily.
There is no cure, simply a band aide. But I'm happy to use this band aide and have accepted my "new normal".
It took time to accept, I just "celebrated" my 5th year in retirement. It was bitter sweet as I'm 37...However, (and I don't mean this in a trite or insensitive way) I have learned to stop asking "why" and start asking "what". What am I to learn from this, and not "why me". In reality, "why NOT me"? This journey that we are all on must have a purpose, and mine although, not the way I planned it has turned out very full and rewarding.
I hope that this has been helpful? I'm happy to continue to chat.