what still works!

I am defineatly feeling weaker, Although my right hand still works well, and my legs are getting me around good, my core balance is getting weak. We all take "getting out of bed" for granted, but I don't anymore! With only my right arm working, its hard to turn over, or fix the bedcovers, and going from a lying position to a sitting position takes core muscles of your abdoman, mine doesn't work so well anymore.

My swallowing is holding its own, but Larry worries about my pills. The big ones are hard to swallow and he worries about me aspirating, so, now he grinds the big pills and I get to take it with chocolate soy pudding. You heard right, Larry bought soy pudding! He thought it read Soup Plantation in stead of Soy Pudding. I ask him what he was thinking and he really told me he thought it said Soup Plantation! I've got to get that man glasses for his 63rd Birthday, which happens to be today. Happy birthday sweetheart, I love you.

A little Coping Mechanism

12 Years of Christmas

My dear daughter came up with this brilliant idea. First she made a spread sheet with all the kids, spouses and Grandchildren names on it. She made 12 years with the ages they would be turning. She left a line for me to fill in of what I Wanted to get them. The spread sheet is in Excell. Now she is shopping with me to get the presents, and we are going to wrap them and put special tags on each one that I sign in advance. So we will make sure that each of the 1st 12 years after I am gone, each one will open a special gift from Grandma Silly. I couldn't do this without my Girly, Bless her heart, its as big as Mt. Rushmore!

How to swallow without choking

I have been to a few swallowing clinics. I have taken the Barium swallow test and failed, sort of. Bottom line, I was chocking quite a bit! Not fun and very scary, especially taking pills. Being the analytical person I can sometimes be, I started noticing the nuances of swallowing.

I realized that as you swallow down your throat, there are 2 ways for food and water 2 go, my tongue no longer works to guide stuff down into the right pipe, so I end up choking.

So I realized that if I just slightly tilt my head left as I take a drink or swallow a pill, it always goes down into the stomach instead of my lungs. How come none of the Dr.s ever told me THAT! I haven't chocked in over a week!

I mean I keep my head level, don't throw my head back, and ever so slightly I tilt my head toward my left shoulder and take a drink. It works like a charm, for now.

Letters of Love From Pam

October 12, 2010

I am in my sisters’ office as she lies sleeping in her bed after a long day of doctor appointments. The house is quiet as I sit typing on her computer keyboard checking my emails. My fingers touching the same keys she has touched a thousand times before. As I glance down, I observe an Obituary sheet that has cross-outs on it by her own hand and realize that she is planning her funeral service. It is at that moment reality hits, my sister is dying of ALS. As the tears stream down my cheeks, I start touching many items in her office that she uses each day and wonder how much longer will she be able to touch these items and will she be able to get all the things she wanted to get done before she returns to her heavenly home?

As I really start to look around, I see her influence everywhere and in everything. Her home is beautiful in its own way, well maintained, but Sis has never needed or wanted the latest and greatest or should I say newest items for her home. Though she can afford it, she is content with what she has and keeps it in wonderful condition. My sister would rather spend all of her money on genealogy items and anything that is remotely related to that subject and would spare no expense to keep it well preserved, organized and complete. She is the queen of containers and everything in her home is labeled, organized and has a spot or a place in its own special container. Instead of traveling the world to sightsee, she was happier traveling in search of grave sites and solving the mystery of our and other people’s family history. Besides motherhood, genealogy was her calling. She loved working at the Family History Center, speaking at conferences, teaching classes on the subject and was disappointed when she could no longer do so because of her speech. How sorry I am now that I never took the time to learn from her. What a world of knowledge she is on this subject.

Caroline is/was an amazing older sister who when I was young held my hand so I would not fall. I am not going to say it was all bliss; we had our differences like all sisters. As kids we were able to compromise, I would cook, she would clean. Unfortunately for her, she had to put up with many of my faults and like older sisters had the misfortune of having to take me several of the places she went just to be able to go. Throughout our young lives, we shared the love of a magnificent grandmother and survived the harshness of a mother who did not have the capacity for happiness and often attempted to have us at odds with one another. All of that was resolved when mom passed away. Our dad was not involved in our younger years, but later in our lives we were able to reconnect and develop a bond. He now suffers with dementia/Alzheimer and depends upon us to oversee his care, safety and supervision. Fortunately for Dad, due to his illness, he will be spared the pain of watching his oldest daughter deteriorate and eventually die. No parent should have to bury his child especially since he had to watch his only sibling, our Aunt Peg die with the same fatal disease that Missy has.

Sis stuck by me through a failed marriage and with love in her heart, helped care for my first son, Matthew. She has grown to love my husband Rick of 27 years and loves all three of my kids as if they were her own. Caroline is a wonderful mother, wife, daughter, grandmother, sister, and aunt.

Christmas is her favorite holiday and one can only imagine her home during that holiday. I have never met anyone that removes everything from her walls and has Christmas items that are numbered to take their place. Trees, lights, walls, cabinets, dishes, both inside and out, you name it she did it for Christmas. It was like walking into Santa’s workshop. My favorite gift that I ever gave her was a complete five piece place setting including the serving pieces of Christmas dishes that I made especially for her. I painstakingly placed each decal and there were several of them on each piece, hand painted the gold trim with my finger and fired them in my kiln. It took me over six months to make the set and she was so excited and cried when I gave it to her. Each year as she put them out she acts just as excited as the year I gave them to her. This is just one of the many things I will miss about Christmas at Missy’s.

But what speaks volumes about my sister Caroline is her strong testimony, love of God, her acceptance of her terminal illness and her joyous spirit. How she can laugh at her illness, talk about her impending issues with ALS, and even make jokes about the pull up, no button "old lady pants" she had to buy because she is starting to have difficulty with buttons and zippers. As her illness progresses, she will face many difficult challenges but I know she will master each of them with dignity and on her own terms with the love of God, her family and friends. As she said to me the other day, “There are benefits of knowing that your time is coming to an end. Think of all the things I can get finished and all the people I can tell that I love them”. As she was hugging me I was crying and she kept telling me “It will be OK”.

And when the time comes that she leaves her earthly home, I know she will live on in her children, grand-children our family and in the hearts of all she has touched in her own special way. I will have all the beautiful memories of our life together. But until that day comes, I will be there to support her each and every step of the way and will treasurer every moment we spend together and Sis, I want you to know I love you forever, I like you for always, as long as I am living, my sister you’ll be!

Love forever and ever, you sister Pammie

Tests, Doctors and Results

Today was one of those days I usually despise and for good reason. 9:15 am ( I'm mot a morning person and have never been) Went to a really nice Dr. to talk about My Thyroid nodule, He said its nothing to worry about.

At 11:00 am we went for my Barium swallow, all I can say is that the test didn't look perfect. As I swallowed different thicknesses of Barium, which were all sickeningly sweet and chalky, from a honey consistency to a cracker with Barium spread on it and every thickness in between. It wasn't as bad as the needle and shock test, but I gaged on the pudding consistency. Every time I swallowed, the Dr and Speech Person would say "look, she gets most of it down the right pipe, but a small amount is going down the wrong part" or something like that. It lasted for 15 minutes or so. The bottom line is: Get a feeding tube put in while you still have your health, don't Wait until the last minute. So I'm in the process of scheduling that right now. I don't have to use it, just have it in place in case I wake up one morning and can't swallow anymore.

Then Larry took me to lunch at the Main place Mall food court. Because it was close to our 2:00 pm Dr. appointment with Dr De Silva. We had some time to kill so we went into Penny's Store and bought me 6 pair of "pull-up" old ladies slacks. Yep, I'm now officially Grma Irene!

When we got to Dr Desilva's office, he told us the genetic test was back. SO.....I do not have the common familial kind of SOD1, but I have the rarer kind of familial kind known as FUS, leave it to me to have the RARE kind of ALS!

Thick it

My swallowing is not good with thin liquids, in fact I choke almost every time I drink water! I used to drink about a gallon of water a day, simply because I love water, but since I got sick, I'm lucky to get a small water bottle down!

I have always taken pills by throwing them into the back of my throat and then guzzling water to wash them down, my record was 10 pills at one time, but no more! I was struggling to get down 1 pill at a time and choking every time I took a pill. This is not fun.

Then Larry bought me "Thick-It". At first I told him I don't need that yet. But he asked nicely if I wouldn't try it in some water. So I did!!!!!!!!!!!!!!!!!!!!!!!!! To my surprise it really has no taste and no gritty granules. It just made the water the perfect consistency for me to be able to swallow! Now I am a believer in this stuff, and I won't leave home with out it!

At today's assessment here is how I stand: My left hand continues to loose mobility every day a little bit, it is atrophying or clenching up on me and frustrates me when pulling up my pants.
I still can eat everything under the sun, but I'm slower at eating and sometimes I have to hold a napkin over my mouth because it seems like my tongue doesn't move the food around correctly. My legs still work well and so does my right hand, that is how I'm typing this blog. My speech has plateaued, but at night, when I get tired, I slur more. My end take on life right now it: Its GREAT!

Special People in my life

Wow! We just got back from a wonderful trip! We went 1st to Mt Rushmore, then to Custer's last stand, then to Deadwood where Wild Bill Hitchcock was killed, then we went to Yellowstone National Park. What fun that was.

Some sweet people in my life surprised me when we got home. See my bungied hair dryer below? Great idea, but it always had to be adjusted!
Now look what was waiting for me when I got home!

Whoever did this was really thinking of me! I didn't even know these existed! I have had so many nice cards from so many wonderful people, a HUGE thank you to all who have sent cards of hope and love and those who have given me gifts and those who are going the extra mile in service! You are making my life so much more bearable as I loose my left hand and now my left arm is pretty much useless, the only thing can do now is to walk and swing it. My swallowing seems to come and go right now. The worst thing to drink is water, which I used to drink a gallon every day, not any more! I can still eat, but I don't know how long that will last, I hope until Christmas!

The Nodule

Well, we had the report faxed to us, it looks as if the nodule in question is only 1 cm large, that's not anything to get excited about. We have also checked with a doctor we know back in Brea. He told us, and the internet confirms, that it is not unusual for adults in their 50's to develop nodules on their thyroids. We will check it out when we get back home from our trip. I still have ALS. Oh Well.