The Sunroom chronicles

Out smarting the killer

Since being diagnosed with Early Onset Dementia two years ago, I have made some changes to my life. I alluded to them in the previous post. For the sake of others living and loving every second of life left, here's my list of changes. As always, take what works and leave the rest! As we say in the hiking world, YMMV (Your Mileage May Vary)

1. Embrace life. Yes, the illness is fatal, but you're not dead yet! LIVE
2. Eliminate stress, simplify your environment
3. Eliminate High Fructose Corn syrup (glucose fructose) from diet
4. Eliminate artificial sweeteners (even Splenda) from diet
5. Eliminate plastic containers for cooking and drinking (try this cool new bottle!)
   
6. increase cayenne pepper and turmeric in daily meals, eat whole foods, local when possible
   
7. exercise daily or as often as possible
8. Lose nasty people, negative-energy-sucking "friends" and chronic "worriers"
   
9. laugh, hug and love the ones who remain in the inner sanctum
10. Aricept 10 mg
11. Namenda 5 mg BID
12. B12 1000 mcg, B6 100 mg, Melatonin 3mg, Gingo Biloba 120 mg, Gotu Kola 475 mg, Lecithin 1200 mg, Fish Oil 1000 mg (I buy online from Vitacost, great prices)
    
13. Daily alcoholic drink, red wine, margarita, etc. (you may like chocolate better!)
14. ROUTINE, make one and keep one.
15. Support of like minded people. Join DASN and meet for daily chats, emails etc
    

Thoughts on testing, diagnosis and the delicate balance between good and evil.

I have learned a great deal from the DASN regulars. Learned to continue to seek answers even when various physicians were not helpful or encouraging. I learned to listen to those who had gone before me, which is a big lesson in Judaism, and has come easily. I learned to balance my energy and simplify my life. To keep my life joyful and peaceful. To do what counts and leave the rest. Somehow in the midst of those wonderful lessons, I have slogged through several different doctors and diagnostic tests. This week finds me finishing something I started 2 years ago. A research study in NYC that follows people with early onset dementias. Knowing that my life is good, that I have found the way to keep managing, I truly did not want to come back to finish this study. It is disrupting the balance. It is short-lived and I am grateful for a wonderful mom who has come with me and a great wife who is managing work and full-time teenage boys while I'm gone. I do not care to stress myself out over the memory tests. I see no greater glory in enduring poor patient care and non-empathetic medical staff. I will complete this round of the study, but if contacted again, I will decline. Keeping the balance, for me, is about enjoying what is ahead of me, right in front of me. I'd rather push my cognitive reserve to get a kid to a Kendo tournament than push it to answer hours of questions and negotiation airlines and hotels in a distant city.
As Nanny McPhee said "Lesson, learned" (and the wart is going to disappear friday about 6p when I touch down in Memphis and kiss the wife and kids.)

Mom at Molly's la Casita

Before Mom and I went to NYU for research testing, we had a great dinner at Molly's. I could use one of those margarita's about now.

Atlanta Kendo practice

Quick Trip to Atlanta (Easter! Good thing we're Jewish!) William is a wonderful sport. Up at 4:30 for a 6.5 hour drive to Atlanta and then 5 hours of practice! Aside for forgetting his hakima, he worked and learned. Big thanks to Ken Strawn-sensei for helping him and to both people who lent him the kekogi and hakima!

Ohta-sensei and Memphis Kendo Club Spring Seminar

Ohta-sensei came to Memphis to host a seminar March 15th. William was exceptionally fortunate to spend time with him here and in Atlanta. He is a wonderful individual and hopefully William will find the spark that he needs to get through a Kendo problem.

Kendo fundraising idea take 2

I was scouring the internet looking for a Kendo-themed cell phone case. I found nothing. I enlisted my friend Sarah and we shopped at Hancock for fabric as well as online, where we found some phenomenal stuff. I have made a few bogu bag ID tags and 2 cell phone cases. The ID tags have vinyl, which doesn't show in the photos, so you can slip your business card in them. The other side has a Kendo related kanji on it.

Handrails are coming to our house

I asked for handrails on the front porch in December. We have sketched several plans and finally ended up with a very simple design. This weekend we bought the materials and with help from each of us, ginger almost has them done. I think I might use a green-tinted stain.

Home Improvement continues

After a storm a few weeks ago we had some roof damage and water damage in the sunroom. Tearing out the wallpaper and carpet was easy compared to fixing the roof! Ginger, William, Max and Renee did all the work. I left them and went shopping for fabric. Does that make me evil or smart? I did join them all at Molly's later for dinner and drinks though :)

another Birthday gift! Thanks Sarah!

My good friend and knitster called today and came over with a gift! She even took me to Hancock and walked that entire store looking for the right fabric for a new fundraising idea I had. The very next morning I had to CO for a cell phone case. I live by my cell phone and the internet and this neat purse needed a nifty cell pocket or pouch. I knit it on size 10's and then hand felted. I almost knit it onto the purse, but decided against it.