I made a bunch of blog goals, I set out to start brand new on June 1 and now it is July 2nd and I've made one post. Ugh, so frustrating. At the same time I've been swamped. School this summer is kicking my tail, work is crazy town and well life just got away from me.
The past month has been eventful. It's been hard, filled with lots of tears, but we've made some beautiful memories as well. Asher turned two! How that is even possible is beyond me, but he did! He is talking up a storm and I feel like he develops a new skill every single day! This is one of my favorites from his party ...
We saw our doctor this month. We did an MRI to compare with last years which was in October. The change was significant. This stupid stupid disease ... I wish we could make it stop progressing as quickly as it is. The doctor was surprised at the rate of progression. He changed his prognosis and we started a new medicine. We've moved well into the moderate stage. It stinks, but it is what it is. I've learned over the past few years that fighting what is wastes time and energy that could be better spent elsewhere. I don't always get it right, actually I probably get it wrong 9 times out of 10. So I guess saying I learned it is a stretch lol, I am learning ... that's probably more like it. The worst part of our visit came at the end when our doctor let us know he is going to Cal Tech. Ugh! It was heartbreaking for my mom and so frustrating for dad and I. This doctor has been nothing short of amazing and losing him is devestating.
Life with Alzheimer's is difficult. That's laughable ... life with Alzheimer's sucks. There are days when she can't form a sentence to save her life. We spend hours looking for something that she can't remember what it is we are looking for. We stress over E.V.E.R.Y.T.H.I.N.G. That one is tough for me. She fixates on things (most of the time not whole truths mind you) and completely fixates on them. She worries and stresses and worries and stresses and it doesn't matter how many times you explain it ... she's still going to worry or stress. Those are the days that usually end with tears. Somedays they are mine, somedays they are hers ... It is so incredibly hard to watch someone go from being one of the strongest, smartest people I've ever known to not being able to put her shoes on the right feet. But this disease sucks.
I do have to say if there is any one person who has completely blown me away (besides my husband who is the saint to end all saints) it would be my father. I have seen this man turn into the most selfless, giving person over the past year. He spends practically all day everyday with my mom. They watch TV, work in the garden, go to the store ... it is a blessing if there can be one in all of this and for that I am so incredibly grateful.
Can I just vent for one minute? I watched a clip on the news this morning about Alzheimer's and the effects that the disease has on a family. Do you want to know how old the people suffering from the disease were? Yeah 70's and 80's, each one had children in their 50s and 60s helping take care of them. Have you seen the new commercial for the alzheimer's drug Namenda? Have you noticed how those people in the ads are in their later stages of life? This is something that has been driving me crazy lately. CRAZY! Alzheimer's is not just a disease that affects old people. My mom is 55. FIFTY FIVE! She still has so much life that is supposed to be left. Yet, all you hear about when you hear about dementia and alzheimer's is people in their 70's and 80's. Again...(yes I whine about this alot) I mean absolutely no disrespect to people dealing with this god-awful disease later in their life. It is still difficult and hard and horrible. I would not wish it on anyone. However, dealing with it with my 80 year old grandma is so incredibly different that my 55 year old mother.
I just find myself so frustrated. Why does no one talk about this disease? How is it 2015 and there is such little progress being made? Our doctor said one thing that has stuck out with me. Yes, this is a horrible disease, but too often people just dimiss it because most people suffering from it have already lived most of their lives. It doesn't have the same appeal and star power that other disease get and frankly, that just makes me so angry.
Back in February, I decided to raise money and awareness by doing the Walk to End Alzheimer's. The walk isn't until September so I haven't been pushing it much lately, but it is time to ramp up the awareness. The cold hard reality is, this disease is prevalent on my side of the family as well as Chris's, that doesn't bode well for my little Asher man. I have an elevated risk for developing this disease early as well. Want me to put it in perspective for you? The doctors believe the onset for my mother was 6-10 years ago. Let's go with 6 ... that' would put her at 49. I'm 33. That means I have an elevated risk of developing this disease around that same time frame as well. Being generous that would say I have about 17-20 years. I do not want my sweet little Asher man to have to deal with the things we are dealing with now. I want there to be better meds, better options, heck, a cure! But if not for me I especially want it for him. He is an even higher risk. So I'm doing this walk to raise awareness. I'm doing this walk to raise money for research, but most importantly I am doing this wak to show my mom that she is not alone.
So far we have 10 team members counting my mom and I. We have raised $745 of our $2000 goal. Who is willing to stand with us? Who is willing to give time and/or money? So many of you have reached out to us and let us know you are with us. You've told us we aren't fighting alone. So who will step up?
Follow this link...
http://act.alz.org/site/TR/Walk2015/OK-Oklahoma?team_id=259183&pg=team&fr_id=7738
and join us. Every little bit helps. Let's set a record. Let's make a stand and let's show this stupid disease we aren't going down without a fight! Who's with us??
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