Wednesday, September 29, 2010

Your not going to believe it

We called the Dr. about the Chest CT scan results, he said "It showed a nodual on your Thyroid". OK, what does that mean????????????????? Stay tuned for further info!

Monday, September 27, 2010

Medical update

Today has been an amazing day- my sinus isn't running non-stop! I only used 2 tissues all day! I also had my chest CT Scan today, we get the results tomorrow. I will let you know the results ASAP. They really don't expect to see anything, they are still ruling out other possibilities, this is just in case there is a tumor somewhere.

My left hand continues to deteriorate, but no complaints from me, I'm right handed. And now that I have my blow dryer bunge corded to my pull out mirror, I can still do my own hair!

I still have 2 tests to go, 1 is a Sinus CT Scan and the other is a Berrium Swallow test.

We still have not heard if I have the SOD1 kind of ALS. That's what they think I have, it is the familial kind and supposedly very aggressive, but the pills Rylotek and Pyridostgim have seemed to slow down my disease, at least I had A great day, of course any day without snot would be a down right joy!

Sunday, September 26, 2010

Fast Sunday

Wow! what a day today has been. I went to 2 Sacrament meetings, one in our home ward and one in the Singles ward. I bore my testimony in both wards to thank everyone for their prayers and fasting. The whole day has been very emotional. A couple of the Single sisters brought me Sunflowers and I got the sweetest notes from several different people today that brought me to tears. Different people have stopped by and spent time with me today. I am going to publish my Testimony. And then I got e-cards from some of my old genealogy buddies.

My Dear Brothers and Sisters,
I am humbled and thankful for your prayers and fasting. I feel the strength that comes from on high from sincere prayer and humble fasting. I love you all. You have always been supportive examples to me.
Of course I come to bear my testimony today expressly because I am going through the last trial of my life. I couldn't do this without knowing a real relationship with our Lord and Savior, Jesus Christ.
We do not know what trials we will be called to walk through in this life, only that no person is exempt from trials, that’s what we came here for, not to live in a place where we are rested and life goes along as if we were already living in Heaven, as I was doing before ALS hit me. Somehow I knew that was too good to last, seriously, remember how happy I was? Throughout my life I have had many trials, it started in childhood with a dysfunctional family that I was born into, but I conquered that with constant faith that the Lord was always in charge. The secret to getting through this life is to never lose faith. If you have true faith, you will never walk alone. And the only way to develop faith is through trials.
Faith is not a passive word either. Joseph Smith said that “Faith is the 1st principal in revealed Religion, and the foundation of all righteousness and that it is also the principal of action in all intelligent beings”.
Elder Bednar said that you can boil Faith down into 3 words: Assurance of things hoped for (plant the seed and try to believe), evidence of things not seen (look for ways that your prayers are answered, even if it wasn’t the answer you expected or wanted) and action (pray as if you had no talents or bodies, turn everything over to the Lord and live to receive personal revelation). I have and that is why I will be happy through this trial and try to keep a sense of humor.
I KNOW God lives, I know He loves me, I know I must be a special Spirit to have gone through a lifetime of trials and finish that way. I pray you will all be especially blessed for the love and service you have given me and that you will strengthen your faith for the trials you will someday face.
I say these thing in the name of my Lord and Savior, Jesus Christ,

Saturday, September 25, 2010


As Mormons we set aside a Sunday each month to fast. Last Sunday in the Placentia 2nd ward they shared a scripture from the Book of Mormon:
Moroni 6:5 And the church did meet together oft, to fast and to pray, and to speak one with another concerning the welfare of their souls.
The ward set aside this Sunday's fast day as a special day to fast for my Mom. I thought I would extend the invitation to anyone who would like to join in and fast with us. I know there are several faiths that believe in fasting and we welcome you to join us too.

Thank you!

The Lord's Tender Mercies

Yesterday I had my 1st normal day since June 1, 2010. What a blessing we take for granted! I mean that I got up, took my pills, which are quite a few at this point, took a shower, but the thing new in our life, is that Larry has to hold the hair dryer for me now, I have lost not only my hand strength, but I'm loosing my left arm strength. That's OK, he is now seeing what a woman goes through when she does her hair.

I now type with my right hand, and I'm getting pretty good at it too.

We then ran errands, went to the Temple for a sealing, came home and worked in my clients genealogy and then went with ward friends on a "burger run". About 20 people meet at Clay Smiths house, we all carpool to whatever burger joint we want to try tonight. And go have some social time and try new foods.

Came home and watched a rerun of "Human Target". All in all it felt like a normal day -HURRAY, here's to more normal days!

Thursday, September 23, 2010


We drove home from SLO (San Luis Obispo) today and I ran a couple errands. One of those errands was to the local Wal-Mart to pick up a prescription for RILUTEK. Would you believe 60 tabs cost $1,059.72 !!!!!!!!!!!!!!!!!!!! That is about $18 a pill, thank goodness paid by insurance. This is the only known drug for ALS patients, it's supposed to help us live a few months longer. I hope it helps on the front end, cause when I start checking out, I don't want to spend days or months doing it.

I want to take this opportunity to let all my wonderful family, old friends and new friends know how much I feel of your love, concern and support! I'm getting cards from folks I don't even remember, and calls from people I haven't heard from in a long time!

I'm busy working on my last client's genealogy, I hope to get it put together soon so I can relax and continue sorting my accumulated photo's!

Wednesday, September 22, 2010

Decision Time

We have decided to make ALS a part of our lives instead of our whole life! That being said, we are on our way to San Luis Obispo to celebrate our grandson Briggs' 7 th birthday. I will miss a week at the Orange Family History Center where I volunteer, but that's OK, Family comes 1st!

At this time the only vacillations (Movement under the skin) I see are in my tongue. I have the most trouble with mucus draining down my throat and swallowing pills. My left thumb and index fingers are useless, but I still have use of my arm muscles so I can compensate.

Now let me tell you what still works! My legs, my right arm, eating food and swallowing it, and of course my mind!

The one thing that comes and goes is my speech! The Dr. gave me a pill that is known to help Myesthenia Gravis called NEELANTHA but I have the generic brand called PYRIDOSTIGM and I think that helps with my speech a lot. I'm lucky the Dr, tried it on me!

Tuesday, September 21, 2010

My 1st visit to an ALS Clinic

Today my husband took me in for our 1st evaluation by a team of experts to the UCI MDA ALS and NEUROMUSCULAR CENTER Clinic and to meet with Dr. Mozaffar. What a wonderful resource this is. I met with a speech and language pathologist, a physical therapist, a respiratory therapist, and a licensed clinical social worker. We also met with the research coordinator the MDA Representative and the Medical Assistant. And we met with Dr. Mozaffar who told me in no certain terms, I have ALS, but we already knew that.

He was most interested in getting my genes tested, particular the SOD1 gene. Because I have 2 known relatives who died from ALS, my dad's sister (my Aunt) and my dad's cousin.

He also was excited to tell us about 3 clinical trials going on right now, they are all very interested in a case like mine that is familial. One is in St. Louis, one in Baltimore and one in Boston.

Next on the agenda is the sinus mri and then the chest mri and then a barium swallowing mri.

Its getting increasingly hard to type. I get tired more easily so farewell until I log in again.

Monday, September 20, 2010

A full medical update

Here is where we are as far as an official diagnosis.

After my EMG, my neurologist had the preliminary report and based on what he saw it looked much more like an autoimmune disorder like Myasthenia Gravis. They took a lot of blood that day to check for an autoimmune disorder. This last Tuesday I went back to the Neurologist to get the blood results.

All of the test results came back negative. He also had the full EMG report and he said that the UCI clinic saw abnormalities but he thought they were being extremely picky. With these results back there are not any other conditions left that describe my symptoms other than ALS. He is doing a chest CT scan since that is the last area where they have not checked for tumors and he also put me on a medication that is used to treat Myasthenia Gravis.

I was told to expect a little improvement from the medication since it strengthens the muscle nerve receptors and amplifies them. Even with ALS there could be some improvement with the medication. If what I actually have is Myasthenia Gravis he told us we would notice a huge improvement. After being on the medication there has been a slight and inconsistent improvement, but nothing significant.

The needle portion of the EMG test was horrific for me and the neurologist on Tuesday just wanted to do 1 needle. We were surprised when he put it into my right arm since that arm is still strong. After that 1 needle the Dr said that the test results were abnormal which is indicative of ALS.

I have noticed that my slurred speech increases when I cry or am emotional and my sinus' run heavily when I am slurring. Today I went and saw my Ear, nose, and throat specialist to be sure there was not some sort of sinus condition that would at least perhaps explain why my speech has progressed so quickly. During the examination he saw fasciculations on my tongue which are expected with ALS and explained that since I am losing control over those muscles it makes my sinus' seem worse because my tongue and throat are not working the same. He concluded that I look like typical ALS.

I have my first Dr apt with Dr. Mozaffar of the UC Irvine ALS and Neuromuscular Center tomorrow. WE will be getting a second opinion and meeting the team at UCI that will help me maintain the best quality of life possible.


I just wanted to tell my Mom I miss her already!

Sunday, September 19, 2010

Noticing little things with ALS

When you first learn you have ALS it leaves you feeling numb. It took a while for me to cry about it. This last week my daughter and her family came home from Utah to help me get my own genealogy, which is scattered in various places around the house, organized. She decided to do this for her own peace of mind and mine too. So now our living room has turned into a mess with file boxes and books, papers and photo's.

While she was here she planned a surprise trip to Disneyland. It was the best day of my life. If you would like to read see the next post.

I have the Bulbar kind of ALS, more aggressive and attacks the speech first. The Dr. gave me some pills that help with Myasthenia Gravis, in that it helps the nerves fire a bit more. I think they have helped my speech not be slurred so much. I am also taking Alka Seltzer cold medicine to help dry up my sinus.

Today I woke up and realized that even my right hand is slightly weaker. I wonder what tomorrow will bring?

Disneyland a la Family

On Friday I was going to Disneyland with Lisa, John, Caleb, and Davis. We got a babysitter for Beckham because he doesn't like Disneyland yet. Larry was supposed to be tracting with the Youth and meeting with the Stake President, which gave me no end of grief because I was worried about Beckham being passed around. I volunteered to stay home with him rather than traumatize him. It was only Lisa crying and saying "This will be your last time at Disneyland with me".

So we went to Disneyland and as we got on the gate, Lisa asked me where we should go, of course I always start at Adventure land and work my way around the park.

As we were walking around the entrance, under the overpass of the train, I'm hoofing it right along, because there is nothing wrong with my legs yet! We get about 50 yards into the park, right before heading down Main street, and I hear a noise, it sounded like Ashlynn screaming Grandma. I looked over to my left, still walking and there were people over there on a porch waving their hands at me. So, I slowed and then I recognized Ashlynn running toward me and my thought was "What is she doing here?" Then I started recognizing people, my whole family was there except Beckham Henderson, and my sister Pam, Rick & Peter Daut.

The first thing they did was surprise me with a special Gift that Kelly got for us to use. It saved the day because the park was crowded.

Then they presented me with my own special Micky Mouse hat with my name on it: Yep, they call me Grandma Silly and I wore the hat all day long. It was the best surprise and day at Disneyland I have ever had, we stayed till Midnight and it was so fun!

Thank you Lisa & John Henderson, Larry Rober, Kelly & Brian Rogers, Brian and Kate Rober, Mark & Lisa Rober and Matt Trelatsky for the best day since I was diagnosed with ALS. I love you all dearly!

Wednesday, September 15, 2010

How it all started

For about 5 years I have heard a sort of buzz in my ears. Its so quiet I only hear it when I am first awake or alone with no other noise to take my attention. It sounds like Zzz and it comes in 3 quick successions, kind of like Zzz Zzz Zzz. Sometimes it changes rhythms and comes as only one Zzz and at other times it goes in four like in Zzz Zzz Zzz Zzz. The only way to describe it is that it is like my brain is trying to fire something and keeps trying. Don't get me wrong, it's not all the time. But I noticed this more than 5 years ago and never paid any attention. It came and went. But now I wonder?

I first noticed the loss of strength in my left thumb. Then in my left forearm. This happened just before my back surgery which I had in March of 2010. After my back surgery it got worse. Then on June 1st 2010 I had an episode they have no idea what it was. The phone rang, I jumped out of bed (like I usually do) and reached for the phone, but I couldn't pick it up! I couldn't make my hands grab it. I felt my self start to faint and so I just let myself fall and on the way down I hit my chin on the telephone stand and bit my lip. I was only out a second if that, but when I could pull myself together, I saw blood on my nightgown. I very slowly got up not knowing what hap pend, but very cautious because I knew something had happened. After this incident it hasn't happened again, but this is the start of going downhill.

Our family had a mini family reunion on the weekend of July 31, 2010. A few weeks before this I tried to tell my husband that I was having trouble talking, but since he hadn't heard me, he dismissed it. Then the night all the families left I tried to tell him something as we were cleaning up and it just slurred and wouldn't come out! I could not form words intelligently! He got concerned at that point.

The next day, August 2, 2010 he made an appointment with our General Practitioner Doctor, Dr. Maria Hutchison.

My Journey with ALS

Today I have decided to start a new blog with the help of my savvy daughter, Lisa. Thank you Lisa.

Here is where I will share my feelings, frustrations and joy of having an incurable disease. My first real post will be with the beginning symptoms, then I will write about the problem of getting a diagnosis. Then I will share my experiences, day by day with you.

So, come and share some time with me and may it give you hope for a better day to come in your own lives.