I fight for a cure for me & our amazing children❤️

Tuesday, January 17, 2017

Clinical trial delayed again!

Well maybe I'm just not supposed to be in this Roche/Genentech clinical trial! Is God trying to tell me something?  My blood work came back and my thyroid is still out of range. UGH!!  The clock starts over and now I won't 'potentially' qualify until late April, which puts the start date of infusions to May.

Hmmm... I guess I'm ok with that. I have given up control of this and am doing my best to just sit tight and see what happens. Since I have to start over on a lower dose, perhaps I can start on Namenda tomorrow too!  My local neurologist recommended it at my visit earlier this month but at that point I didn't want to push out the start date of the trial any longer than was needed. Now I'm starting to realize that one month difference is no big deal in the long run.

I should know more soon! If I can start on Namenda, I hope there are no side effects. I'm already constantly fighting headaches and am pretty low energy and sleepy.  I have a hard time falling asleep no matter how late I stay up. Meditation and music have helped me but it still takes at least an hour for me to fade into a decent sleep.  I'm active during the day and am in good spirits most of the time. But some days I just want to sit and read and sleep and knit if I can.  It's all part of my new 'normal' so I try not to judge myself.

So we shall see what's next! Taking things one day at a time is helpful. I'm looking forward to spending the weekend in Sedona and having some quality time with my girlfriends.  I'm doing my best to cherish every moment and be at peace in my new journey.

Love and peace and blessings to you all💜

Tuesday, January 10, 2017

Happy New Year - bring it on 2017!

It's raining's been raining for almost two weeks and there's flooding and roads closed and on top of all that, our famous 1000 year old sequoia fell over this weekend! I was extremely sorry to see that, but you don't mess around with mother nature.  With the rain comes slippery roads and so I have been staying close to home.  Utilizing the dry spells to get outside and make sure we have enough groceries for dinner.

Although the skys are gray my spirits are high!  We have already had a great year and I am very excited and hopeful for what 2017 will bring.  As I mentioned in an earlier blog we had a great Christmas and really enjoyed time with our family.  I started knitting another blanket for Michael (our 6 yr old grandson) and have made great progress.  When it's wet outside I like to give myself permission to sit and knit and enjoy the day.  I love being warm and to have my kitties next to me with the fire going.....It's the little things in life....isn't it?

We got an Amazon Echo - Alexa this year and I absolutely love her! I have mine in our bedroom and when I wake up I ask her to turn on Christian music. Very softly and sweetly I wake up to uplifting and inspiring songs that help me start my day with an attitude of gratitude.  Having Alzheimer's does not define me, it does not bring me down. I have a new purpose in life! I have been given an opportunity to help others and raise awareness and hopefully to help find a cure. What a gift💜💜

Not everyone has a purpose.  Or perhaps you haven't figured out what your purpose or passion is yet. I believe in order to reach your potential you need to find your purpose and then passionately work to acheive your goals. Doing the most you can to help others and give back to your family and friends and community. And as my neurologist told me last year after my diagnosis, 'do what makes you happy'. If you are happy then you can work harder to acheive your goals.

Last week I was HOME ALONE for an entire week.  Since my diagnosis I had not been alone for more than a few days.  At first I was a little worried about how I was going to spend my time, and a little scared because it was wet and windy outside.  I went to bed at night with a flashlight in case we lost power. I was sick with a cold but still functioning pretty well. Every day I made a list of things to accomplish so that I could feel like I was doing something productive. Most days were spent knitting and sleeping and watching a little TV.  The highlight of my week was Thursday when I went to the local Alzheimer's office to do some peer to peer phone calls.  The people there are so uplifting and always bring a smile to my face. I walked in a little tired and sick and walked out two hours later with a smile on my face and joy in my heart😊  I am so thankful for them and all the support they have given us.

No matter where you are or what the weather is like, I hope you too can find joy in every day and do something that makes you happy.  I have a holiday planned in Sedona with two of my best girlfriends later this month, we booked our trip to Australia to see our soon to be born grandchild in July and in March we will attend baseball spring training in Scottsdale and watch our Giants with some dear friends!!

I think it's going to be a great year!  Maybe I will qualify for the clinical trial this year and maybe I won't. Either way I'm going to be writing about my disease, talking about it as often as I can and ensuring that everyone knows what Alzheimer's looks like!

God bless you all! HAPPY NEW YEAR!

Happy New Year!