Mother of young children with Parkinson's Disease

That's me. A warrior. Always marching forward, or just marching. Constantly in a battle. Not taking time to look back, or look around. Just got to keep going. I have to keep going. They told me when I was dx with PD that it would be 10-15 years before I would need a wheelchair. WTF? Me, a crippled person confined to a wheelchair? I had just given birth to my 2nd son & was a breast feeding mom. How could I have such a permanent, debilitating disease? I just created a new life with this body. A new life that I had yet to nourish, nurture, shape, etc.

How was I going to tell my husband? He didn't deserve this. Our children certainly didn't deserve this. What a burden I have created. Will I shame my children by my presence at their schools. Will I be able to walk with them to sporting events they may participate in while growing up? Will I be able to catch a ball, teach them to ride a bike, or jump in the water to save them if they should struggle in a pool? How will I be able to parent at all? I will be watching my son's graduate from high school in a wheel chair. What teenage boy has the strength & courage to push his mother in a wheelchair & still hold his head up high among his peers? What a big task that lays before me - preparing my children to have strength, courage, and fortitude to march into battle along side me.

Fast forward 5 years:
I fall asleep early on the couch & then wake up later, after everyone has gone to bed. I haven't been able to read stories to the boys at night because I can't get to the end of the book without falling asleep. My son did well in 2nd grade last year but no thanks to me. I was hardly able to help him with his homework due to lack of energy. Amazingly he still scored well in the STAR testings. He is my hero. Always willing to lend a hand. Never asking for anything. He has a generous soul. And he still loves doing things with his mama!

I haven't spent the same amount of quality time on my second child as I did my first do to lack of energy & the ability to stay focused on one task. My oldest son knew the alphabet when he was two. My youngest is 4-1/2 now and still doesn't know his ABC's. Yeah, I know, every child is different.... But this difference is definitely due to lack of time put into him. Why can't I get myself involved in educating him like I did with the first one? Where am I going to draw the strength from? Why aren't I motivated any more? Is it the meds or the disease that is kicking my butt?

Other rants:
So glad MJF is getting so much publicity with PD these days. It makes it easier to explain to someone what it is I have wrong with me when I just say names like Janet Reno, Micheal J. Fox, or Mohamed Ali. People still don't know the name of it: Parkinson's Disease. But at least they can form a visual image in their head and I don't have to give a medical lesson each and every time. I get tired of talking about it. Who wouldn't? It is just too damn depressing.

...No there isn't a cure.... Loss of brain cells.... The cause is still unknown.... Basil Ganglia... It could be hereditary but that is yet to be determined.... Loss of Dopamine... No there isn't a drug to cure or a drug that treats the disease effectively.... Only meds for treating our symptoms are available... Yes I have tremors but you just can't see them right now because I am so full of drugs! Stop talking to me already about it. Topic change!