Visitors

Three players from my first team in Granite came by today. Eddie Stinson, Abel Bazan, and Clyde Crow with his wife, Stephanie. It was nice of them to come by. Abel lives in Bellingham. Clyde and Stephanie in Seattle and Eddie in Lake Stevens. I have fond memories of coaching these fine young men, even though they are in their early 30"s. They were a pleasure to coach. Clyde and Eddie were on the hiring committee. Thanks for hiring me guys.

Feeling Better and Christmas Music

Yes, no one is more happy than I that Keith could go to the gym by himself. Two weeks ago he felt he had to have me there in case he'd fall on the stairs. We just couldn't coordinate schedules (no, we're not just sitting around :) I had to take Diala home and do other errands) and thankfully Keith was able to meet at school and help his replacement. He felt very good in the morning but he was quite fatigued by the time we met that night at Haggen with my sister and her husband, (Yes, it's a grocery store, but it' got a gas fireplace, and is quiet and close and we have a plethora of choices!) Our kids think it's a little strange. We find that as we get older, it's more about the company than the food. Plus, Keith has seen friends there everytime so far.

Keith definitely feels better. For those students who were in his class for all 4 years, sometimes 5 years :) , they would know everything is ok because he would play Christmas music beginning in Oct. We tried to get him to wait until the middle of Nov, but we got so used to it that we know something is wrong when he doesn't play it early.

Some of Keith's players are coming over about 10am. He is pleased about that. Some family also.

I'll close now to the sound of Johnny Mathis singing "White Christmas."

Gold's Gym

Hello, I went to Gold's Gym today for the first time in 3 weeks. I am feeling much better. I was able to do the elliptical machine for 30 minutes. I felt safe. I use to do it for 40 minutes.

Diala was here last night. We had fun. She got us up at 5:30 AM as usual.
The ocean was great. It was nice to get away.

Keith

Kayleigh and Ocean Mini Vacation

By now, most of you know that we had another granddaughter born Monday evening. It was very hard not being at the hospital but we're back now. I just finished holding Kayleigh for a long, long time. Need I say, she is perfect, so cute and very, tiny! When they handed her to me, she was like a doll. Grandpa held her too like he knew what he was doing. Fun to see.

So, we went to Ocean Shores during a stormy time. We heard that several people came specifically for storm watching. Not us. To me, it was somewhat scary especially after reading the card on the desk with instructions on surviving a tsunami. On the back side, it said, " Don't let this warning spoil your stay with us!" We did wake up and were able to spend some much needed time together just not 24 hrs daily :) This forced retirement is not what we planned but we believe and trust that it is for some good reason. Honestly, I thought I of all people, would never have a problem being together with Keith and I even bragged about it. But for both of us doing it with MSA wasn't what we could ever have imagined. We will make it because our vows we spoke before God and witnesses on Dec. 16, 1978, said for better, for worse, for richer, for poorer. In sickness and in health. Well, this is the sickness part. We hope and pray we get to practice them for a lot more years.

We want to thank my sister, Cheri, for taking care of our dog, "Pepper." My sister, Patti, and her husband, Dave for all of the time and work they have done helping to make our home safe for Keith. Ernie, for planting my boxwoods. Andy, who while we were away, trimmed and more, our yard. Kim, for offering to help put a floor in our office. Gary and Jean, for understanding and all of you for reading The Keith Johnson Blog. Clint was pretty excited about the 1000 hit mark. Of course 800 of those are from our families. :)

Goodnight. I love you Keith

Pam & Keith meet their newest Granddaughter Kayleigh Anne Johnson!

To view more pictures click on the picture. Then click "Photos" on the right side below "Clint Johnson."

2010-10-27

We Have Hit 1000 Page Views!

Thanks to everyone for checking out the blog!

Slice of "American Pie"

I love the references to the song American Pie by Don McLean. My dad and I listened to that song many, many times on road trips! I still have it memorized.

A New Baby and the Seahawks won what could be better !

Of course, the day Keith and I are suppose to go to the ocean, that little Kayleigh chooses to be born. What a blessing. I ask for prayers as April is a "high risk."

At the encouragement of April, Clint and the rest of the family, Keith and I are still going. We have a great family and they will fill in for us. You can't get much better than that! We can't wait to see her.

We won't be posting for a couple of days. We will catch up when we get back. Looks like a storm's a-brewin!!!!!! Thank you for all of you who helped us this past week and came to visit.

Love to all,

Sunday

I feel so bad. I just lashed out at Keith for something ridiculous. Thankfully, he knew it wasn't about him but about the MSA. And here, I was, thinking I was coping with everything that MSA is throwing at us; that I wasn't angry and then this flared up. I don't know how he does it, but for years he has been a sounding board for so many angry parents, frustrated students and adults and yes a mixed-up, hurting and sad wife. How could I do that to Keith of all people? I love him and he knows it, so we get over it and carry on.

Now for some fun news. We bought a TV with the generous donations teachers from Tonasket gave us. It is the first one we ever bought. We just kept taking ones from people who wanted bigger and better ones. We were happy with out 27" tv. It took us awhile, however, to realize that no one wanted to come over and watch football or basketball games with us. Now, we know why. :)

Also, we are going to the Ocean for a few days this week with a gift certificate from the Granite Falls Staff. We look forward to some time together. So many of you told me that you love the ocean in the fall, especially if there is a storm. We'll let you know how it turned out.

Thanks for listening.

Family Fun Day

We had a great family fun day. We fixed the bathtub, cleaned the garage, and went to the dump. We also fixed the garage door opener. Clint, April, and Hunter were here to help. Kristi, Jose, and the girls were here to help also. Uncle Dave helped with the bathroom and garage door opener.

We had lunch and had a fun trip to the dump. Now we are going to haul some stuff to Kristi's new apartment in Everett. April is trying to have her baby. She is very uncomfortable and ready for this baby.

Uncle Rich is coming tomorrow to watch the Seahawk game. He is bringing pizza! I will probably watch Minnesota play the night game. Brett Favre is still the only player I would pay to see play.

We had a great day.

Happy Saturday

What a great morning. We had a fun dinner with Patti and Dave last night, and today some of our family and friends are coming by of course to help us because that what all of you wonderful people do for us. Keith and I say "Thanks" It's true, I do like to have people over, so when we ask, please don't hesitate. You'll know if I'm overbooked because I get a strange sort of silent glaze on my face. If you see me smiling, all is well. If my heart is heavy, it's not there.

Have a fun week-end.

And to Uncle Gar and Aunt Jean, thanks again. Words cannot express our gratitude. But we are going to be doing some smiling. :)

Keith says to please note his comment from yesterday.

A Synopsis

I thought some of you might want to know kind of how this started and the progression. I wasn't around when it first started so I'll let my mom or dad fill those details in more, but I'll share what I know.

About four years ago my dad and mom started to notice that dad had some balance problems so they decided it was significant enough to go to the doctor and get it checked out. I'm not sure how long the process took but it was finally decided that he had a condition called Ataxia. Ataxia is much less severe than MSA, so while it was strange to us that dad had a problem, we figured Ataxia wasn't too bad.

About a year after being diagnosed with Ataxia mom and dad decided to go to the Mayo Clinic in Minnesota to get a better diagnosis. So in the summer of 2009 they went to Minnesota and dad went through extensive tests and it was determined that he had MSA. I remember mom and dad telling me not to look it up on the internet because it would just freak us out, so of course the first thing I did was look it up and discover that it is a fatal disease. But, the doctor said dad was doing really good for having it so we all thought of it as more of a minor inconvenience instead of a life altering condition.

So we all started things like normal that fall, I worked with dad in his classroom and as the year went on I started to see first hand how this was affecting him. One of the first changes I noticed was that his handwriting wasn't very easy to read. At the beginning of fall 2009 it was scratchy but legible, now it's very hard to read. He started to have balance issues at work. One time he went to sit down on his chair and all I heard was a big thud! He had fallen, but he was on the ground laughing. He had told his students the year before because his balance issues caused him to stagger sometimes and if someone didn't know he had MSA it might seem as if he was drunk walking around. This past school year, however, he had a couple of falls at work and his balance was getting worse. During basketball season he was beyond exhausted and we all knew it was his last year of coaching.

By the end of the school year he was using a sleep machine at night, Dan at school had installed a document camera so he didn't have to write on the board and all of us at work kept our eye out for him for falling. At home he was getting up at least once a night usually and there were small changes: an extra railing in the bathroom, mom carried his coffee for him so he didn't spill, Uncle Dave reinforced the stairs on the porch. Basically he was at the point where he needed both hands to climb stairs and it was getting harder to do.

This past summer was good for him, I think, he was doing pretty well. He was doing yoga and going to acupuncture and getting more sleep. He seemed to have more energy than he had during the school year and we were all in good spirits. Then I would say about a week or so before school started he started to have sleepless nights and started to look tired. He did his first week at school without students and then his first week with students and he came home every day exhausted.

On the third week of work he started out the week but ended up going home a couple days in a row because he didn't feel well. It was as if someone had flipped a switch and he was on deteriorate. I think we all started freaking out a bit because he had been doing so well prior to this. Dad and mom talked about it and they decided he wouldn't be able to finish out the school year. I also forget to mention that by this point dad's speech had been getting worse and some words are hard to understand from him and he get's tired if he talks too much. About a week or so after he took a medical leave he started to feel better so mom and dad wondered if he had had the flu and if he wasn't really as bad off now as we thought. He's feeling a lot better than when he had the flu, but not well enough to teach.

Now, dad is well enough to go up to the school sometimes and stay connected with the kids. Part of the issue may have been that his sodium was too low, which if untreated could have caused swelling in the brain. So that is a synopsis from what I know, and here are a few quick facts about MSA if you didn't want to read the links:

There are two types: MSA C and MSA P, dad has MSA C, which tends to be less severe than the other. Both are fatal, but those with MSA P seem to deteriorate faster and spend more time with less mobility

Those working on finding a cure for MSA are undecided as to whether it is caused by genetics, environment or both.

The average patient with MSA (typically males over the age of 50) dies within 8-10 years of the first sign of symptoms. This fact right here is why the doctor didn't want us to read about this on the internet and it has been the hardest factor. In school I researched this and wrote a 17 page paper on a way to cure it. I have found certain alternative medicines that sound promising, but no cases of anyone who has MSA being cured by any medicine, traditional or nontraditional.

This fact is a big part of why it makes it so emotional, we have no idea what is going to happen or when or how severe things will be. We don't know if dad will be able to live out his days with mom by themselves or if it will get severe enough that they need to bring in outside help. Dad could live another 10 years or go tomorrow. I hate even seeing those words in print, but it's true. That's why mom had a breakdown because it's such a hard thing to tell people, let alone even try to comprehend. When dad was doing well we could pretend that he was ok, and that MSA was just a mere annoyance not a fatality. Now it is in our face and it's harder to deal with than we anticipated. I can't believe that I am going to lose my dad, and that fills me with an ache that hits me every day. I also know that I am going to lose my mom, not permanently, but someone can't lose their soulmate and be expected to be the same right away, if ever.

I just keep thinking how unfair this all is and I don't care if I'm being selfish, but this shouldn't be happening, not to dad. Of all the people in the world I cannot believe life would choose him and it makes me so angry! I'm angry, that is the stage of grief I am in. I am angry that my dad has MSA and that he can't do all the things he wants to do and feels like a burden at times. I am angry that my mom has to organize a million doctors visits and deal with insurance companies and make a life for herself after dad is gone. I am angry that Clint and I have to go through the rest of our life without our dad and that my children and his won't get to know him as well as they should have. And most of all I'm angry that I can't find something to cure him. Being powerless is a truly soul wrenching feeling.

That being said, my dad is amazing for staying so positive. I have not once seen him loathe in self pity or express anger over this. He takes it all in stride and is our rock, the one staying strong. He's been making jokes about MSA since it all began and I'm sure that will continue. He's always smiling and his positive attitude makes this whole thing so much easier on us. I can't imagine what it would be like if he was depressed or emotionally vacant.

My mom is amazing too, she has to take care of all the medical records, doctors visits, referrals, things like that and make sure dad is taken care of. She also finds herself shifting into the caretaker role and she is taking that on with grace and trying to keep things as normal as possible for dad so he doesn't feel like a patient.

Clint is helping mom and dad navigate the maze of social security and medicare and those applications that he has to do. Without Clint I don't know if mom and dad would have been able to apply for those things without hired help.

So, that was my synopsis and a bit of ranting. Hopefully mom, dad or Clint will fill in the holes of the synopsis and add details if needed.

Clint and Krist

You know, sometimes I forget what Clint and Kristi are going through. I'm not going to write about it now, but they are the best adult kids anyone could have. They and their families have given us so much support. We love them and miss being able to see them as much.

Up Way to Early

I don't like the 5's as I call it. My natural time to wake up is 6:15 but I would rather get up about 7am. Hunter is sleeping in the next room because April went to the hospital only to be sent home to wait out the coming of the baby. The baby is priority I told Clint so I had to do some heavy persuading to let us have Hunter. You see, Clint and Kristi don't want to add to their dad's tiredness.

One, two, three, I count. Come on Keith, "Breath!" Well, he is, but it is now so quietly that I realize he has taken his mask off. It's ok that he takes it off the dr. says. I can't control it anyway. However, then comes the snoring so I get up. I want Keith to sleep so I hope he doesn't notice I'm gone. Sleep,sleep,sleep, honeypie. I knew it, he just came out because I wan't there so I said, "I knew you'd get up, go back to bed ok? You can read about what I'm doing on the Blog." He laughed and went back to bed. Neat guy, that one. He's funny. Last night we laughed walking together like Charlie Chapman to our room; only for me, it was pretending.

Toilet paper. We need toilet paper! Doesn't the world know I have more to do than get toilet paper? Thankfully, in the end, all of us will be glad if I remember that message. :)

Keith can't go to the gym now without me. While I don't mind going, I'm going to have to some better scheduling. I do miss the freedom he had going without me. He does too. Perhaps he will be able to next week. I suggested getting an eliptical for our home. He may be ready now and because of your generosity we can get one. (I know some on you have one you may be using for a coat rack right? Maybe it would be good to buy one slightly used.)

Had Karen and her dad over for lunch this week. Lots of fun. Hmmmm, only 5:34am. Still time to sleep but coffee sounds better! Good Morning.

Sort Of Down

Not Keith, but me. I sort of lost it No, I wasn't blubbering and I barely used a kleenex but when the dentist asked me how I was and really wanted an answer I started crying. So many people want to hear nothing really or that all is fine. It does make it easy for society to exchanges these pleasantries and be on with it. I'm even ok with it. But it did suprise me when she asked, so I said you must know about my husband assuming most in town know. Anyway, as I told her I cried. But also, I had just been given a shot and my eye wasn't able to close and I was going to get a crown done, so I was a little apprehensive and scared about my eye. Well, they treated me so kind and went so slow at it that I was there for 3 hours :( I'm ok now after I treated myself to an eggnog latte. Yummy.

That sort of leads into how Keith is doing. He feels bad because he can't help with a lot of things that need doing. Our lawnmower broke while I was mowing. Our garage door opener broke. It's getting cold out and he doesn't want me to have to scrape off ice, or moisture and be cold because I can't park in the garage. (Ok, so my car wouldn't fit in there anyway until Kristi gets her stuff out this Saturday. That's beside the point) He can't plant my boxwood plants for me or vacuum. But, just when he was having to worry about me, a friend who owns a lawn service business offered us his services, our neighbor lent me his mower so I could finish, and this is our 3rd garage door opener so Keith knows a lot about it. Things are looking up. And a friend from church is coming over to see how he can help with putting in a new floor in the guest room.

Hint, Hint, Come and visit, we have room now:)

Keith felt good enough to get back to his exercises! So, until later.

Challenge Day success

He did it. He's awfully tired but it was a good event for him to do. He said he had fun. He even came home and was able to help me with some chores. Yeah! So no doctors today.

Keith wanted you to know that he is reading The Boy Who Came Back From Heaven. He reads daily so feel free to suggest a book you have enjoyed to him. He has quite a list, but is determined to go through it.

We are looking forward to our mini trip but with some trepidation. Traveling has not been easy for him but I'm sure it will be worth it. If we could just have a day where MSA is not dominating our thoughts.

Goodnight

No need to comment

Just a reminder that Keith and I do not care if you comment. The "Blogging" is what we do and all you have to do is choose to read it or not. No pressure :) Keith appreciates and likes people reading it. With his sometimes slurred speech causing communication problems various days, it is easier for him to dictate a message for me to type about what he wants you to know. He's not getting out of talking that easy, however, because it is good for him.

He really is a neat man. So kind and caring. Thank you Denny and Renee for bringing him into this world. So many people have been touch by him in a positive way. I know you are as proud of him as I am.

Tues. brings a challenge. Keith has been asked to be part of "Challenge Day." I tried to talk him out of it as it is an emotional day, but they really want him there so you know Keith. The principal promised she would take care of him. I'm sure he'll be fine. Off to bed.

Grandkids moving

Kristi and family moved to an apartment in Everett today. We are excited for them to have a chance to be alone as a family. They are happy. They live close to a college (Kristi still loves school) and the elementary school the girls will go to.

We love them of course, but preschoolers being who they are suppose to be don't help when grandpa has MSA which makes him very fatigued. They need to be where they can make more noise.

Truthfully, part of the reason is that Keith and I do not want them to live around someone who has his disease. It will be too hard on them seeing grandpa with stiff movements, facial looks that are due to the disease that they don't understand and other scary symptoms to children.

Yes, they love him and want and need to see him, just not daily.

Tired, but good day.

ups and downs of MSA

Wonderful lunch with friends from Tonasket, Jack and Julie. As we left, they presented us with cards signed with such love and encouragement that those words alone would have been enough to make us cry, (Ok, we did cry, but you would too!) but they added enough monetary gifts that Keith and I can go on a trip of our choosing :) To think that friends and colleagues from 14 years ago would bless us like that is very humbling. We are thankful.

Oh, but the ups and downs of the disease. Our joy was followed by the necessary completing of paperwork for Social Security Disability Benefits. Thankfully, Clint helped. It's still not complete but almost!

Going to rest now.

Oh yeah, Keith was able to walk 1 mile today. He used to walk 3 before he got the flu.

Keith talks

Thanks family and friends for visiting. I appreciate the visits. Jose and Kristi made us a fun family breakfast at 7am. Not a problem since we are all early risers. Kristi and Jose and the girls are moving to Everett Sunday. We will miss them.

We see our friends from Tonasket, Jack and Julie for lunch at the Spaghetti Factory and plan to see Pam's mother and father's gravesite.

Go Vikings! They play Dallas Sunday.

Keep visiting,

Love, Keith

Update From Pam

Thank all of you who are our family and friends for letting me post as I feel needed. Some post may appear factual, some sad, some happy, maybe even some poetic. If possible, it will be some sort of record to leave Clint and Kristi. I'll will always write from my heart.

Having said that, yesterday was good and sad actually. Keith was able to go to the school for an hour (3 days now) after having a lengthy speech therapy session, followed by a chiropractic visit. After that we did something I never imagined doing. We went to a medical supply store and picked up a 4-pronged cane and a roller-walker for Keith. While we are extremely grateful that insurance covered it, there was feeling in me watching him roll it out of the store that is hard to explain. He's a trooper. He hasn't used them yet, but is getting in need of them. He's a little stubborn in that way which is probably why he is doing better than most of MSA patients.

Also,we were able to do a short walk on the trail, in the rain. The other day when he walk at the High School track some football players offered to help him. It embarrassed him but he understood their intent. . We took pepper and for some reason, Keith didn't want to hold her leash. We had a good laugh at that!

Posting Comments Now Easier & Links to MSA Info Added

I adjusted the setting for the blog so it is now much easier to leave a comment. You no longer need to sign in to leave a comment. Try it out if you want! :)

 

Also, I added some links to general information about Multiple System Atrophy (MSA). The links should be located on the right side of the screen.

Dad seems to be feeling better now that he is not teaching full time, but walking has been difficult. He went up to school for an hour today to help out and visit.

 

A Great Day

Yesterday, our school district staff presented Keith and I with a gift certificate to Quinalt Lodge on the Ocean. Not only that but other contributions making sure that we won't have to pay for anything and I mean anything, with some left over. Such generosity makes us thankful and feel blessed. The food dropped off at our home has been so good and fun to share with the family. Keith points out that is it gone. :) Some of the most amazing and proud words for me to hear, are how much he will be missed by both staff and students and what he means to them. They join with me in knowing what a caring man he is.

Keith walked the Centennial Trail while I was able to ride my bike. It was beautiful with the sun shining and the leaves lightly blowing down.

Thank you all,

Pam

My first time updating the blog

Keith and I just returned from a walk on a beautiful sunny day. He did pretty well and saw a couple of basketball boys. That made him happy. Other students on the field also said "Hi Mr. Johnson."

Our friends came by and brought us a Keureg coffee maker. It makes coffee very fast and easy, so come and visit and you'll get a cup.

More later,

Pam

First Update Via Blog

Hello,

Dad has been feeling much better this weekend. It looks like the medication he was taking caused his body to have too little sodium which could have eventually lead to swelling of the brain.

Dad started feeling better on Thursday. Friday he felt good enough to go out to eat.

Apparently the urologist had some blood work done and found the low sodium level. The endocrinologist then said to stop taking the medication. Tomorrow dad will get his sodium checked again which will determine the next step.