Christmas Fun!

Check out some fun Christmas pictures of the family! :)

Christmas Pictures

Keith

I titled it "Keith" because he is still here. Just living day by day is getting more and more difficult as you can imagine. Actually, most of you can't imagine it as I hardly can. I thought I knew what the caregiver went through because I watched my mom care for my dad at home for six years. But as much as I remember trying to help, I did more watching than helping. That's because you can't help as much as is needed for the 24 hr caregiver. Believe me, I have several family and friends who are trying and I thank you for that. Praying for strength and wisdom is my desire from you.

Now, back to Keith. While he needs help getting dressed, blowing his nose and many other small things  MSA is robbing him of, he can eat, enjoy music, watch tv, and play Farkel . And this point leads me to the title. Keith is here mentally and would love to play a game of Farkel with you. Like I have said, this is a fun way to be with Keith though he does like to win. If he loses he may want to play up to 3 games. It depends on how weak he is at the time. Or if you want to watch part of a football game, that works. I know I have limited time in the past for company, but now it is different. It is time to say your goodbyes. We believe this will be his last Christmas. Though the Hospice team concede they are not God, they are helping us see what Keith and I already feel.

I am sorry to deliver this sad news, but I want you to know.

Have a wonderful and blessed Christmas,

Love,

Pam and Keith

Alone? or am I really?

I feel so alone but I am not. Family, friends and new acquaintances  come and go in this beautiful home several times a day. The disease's progression has caused all of us to react in non normal ways.  Many times they don't even say "hello" to Keith. I understand because I do the same thing. His voice is so quiet that unless you are face to face, you won't be able to hear him.  I am always saying "what?" because I have my back to him either preparing a meal or cleaning up one or just "doing." And it is not only us but Keith who acts different. We have begun to notice him retreating to be alone often even around family. I feel bad when this happens, but I understand that this is a natural part of his dying experience. I was explaining this to Clint and he laughed and said he was wondering why the other day when he was here watching football with him, he just started up his power chair and left! We all know that Keith loves being with Clint and Kristi.  

 We are both trying to keep it together having to have such a sedentary life. You would think a life like that would be heaven, but it is difficult. It's one thing to be under your own rules and rest when you choose, it is another to be at the call of MSA.

I am definitely NOT alone. Our church is providing meals. I love it! Keith and I are loved by so many of you and we thank you for that. We can feel your love.

 I have been kind of "loopey" I put the sugar in the microwave and handed Keith the banana instead of the tv control. Things like that when I get tired. Sort of a comic relief =)

What actually led me to think I am alone is my lack of being or "abiding" with the Lord. When I don't have devotions daily or they get shorten it often causes my brain to go directions that are not healthy or helpful. Because in my quiet times with the Lord is where I get my strength, wisdom and more to go on. My devotions often get interrupted by MSA needs, too numerous to name.

So, my request from you our family and friends, is to pray that I can be in communication with my heavenly father. Because without wisdom from above, Keith and I will not make it through this journey. In the end, we want to know that we have done the Lord's will in our lives.

Blessings and more pictures soon!

Pam and Keith =)

Some Fun in our lives

I want to let you know that along with the cloud that seems to hand over us, we have had some fun this summer. The grandkids are so cute and make us smile. Our niece had identical twin boys about six weeks ago. How precious they are!

Clint and April were married in Maui, this August. Also Kristi and Jose were able to be part of the wedding along with April's twin sister, Kathy, and her husband, Jeff. It was a beautiful ceremony. Keith and I were so happy that the kids could have some great fun in their lives. It has been pretty "heavy" around here for all of us. Who doesn't smile in Hawaii?

We've had several visitors, some from as far away as Alaska. All taking the time to come and see Keith. We can't tell you how much that means to us. He is tired but if we time it right, he can still see friends. He needs it! He is getting mentally very tired of the day by day journey of MSA. BUT, he still smiles when he play Farkel =)

 Did I ever tell you that Keith loves animal cookies!

I will leave you with one last note. Oct 3rd is world MSA day. Who knew? =)

Another stage I believe

I've tried to write this post several times, but can't seem to get it done. I will try again because I know you want to know how Keith is doing.

He is not doing so well. He can barely walk 10 steps in a day and relies on his power chair for most of the day. He is not only extremely fatigued but has gotten weaker in the last month. He has difficulty getting in and out of bed. Our Hospice team is here sometimes 3 times a week. Their support is wonderful and all of us at this home feel thankful for their help. Yesterday, Keith would have ended up in the ER if I hadn't been able to call hospice. They came out right away, in fact two times yesterday and did what had to be done. By dinner, Keith was hungry and even slept fairly well.

Now the good news. Keith is not only showing tremendous patience throughout this MSA journey, but he is exhibiting "contentment" during the midst of it. He is ready to go be with the Lord but knows it is in our heavenly father's hands.

Life is precious. Strangely, I am feeling such a "peace" about this phase. We both know our time together and with family is disappearing and we struggle to get together at a time when Keith is strong enough. This leads me to the next subject, visiting.

Many of you have told me that it is very difficult to see Keith as he is now. We understand so don't feel bad. Others come over like he is just the same. That is amazing for me to watch. And I thank you 3 or 4 who do that.  If you want to see Keith, he would say make it sooner than later. I'm not sure about that but that is what he told one of his favorite athletes who said he was going to come and see him. A 15 to 20 minute visit is about all he can handle in most cases, though I've heard him talk more than that when it is about sports =) I asked him yesterday, if he still wants to play "Farkle" with friends and he said yes. Playing the game is an easy way to visit with him because he doesn't have to talk a lot and besides it makes him happy!

Enough for now, Love to all of you and thanks for asking about him.

Pics from Mariners Game!

Click here to view pics on facebook!

Hospice

Keith and I made a tough decision this week. After much criteria had been unfortunately met by Keith such as barely being able to walk, more difficulty eating certain foods resulting in dangerous coughing and more, and with the help of the Palliative or Partners nurse we said yes to Hospice. They will soon set up a meeting to admit him into the program and explain more about its services. They will come to our home and will abide lovingly to Keith's wishes. They don't hover. They should offer some support for both he and I. I will keep you informed as we learn and live more of Hospice. The most important thing we would want you to know is that Hospice isn't a death sentence. In fact, some people even "graduate" out of Hospice.

I have been thinking a lot about "respite" care a lot. Many of you don't know what it is. I am learning that there are a few types of respite.  For me, let's call it a "relief" for the caregiver. It's like when I ran track and handed off the baton to the next girl on our team with such relief that I was done. Ok, so I only anchored the relays throughout high school and college. But when I went to the Nat'l team a few times, I was among such wonderful and faster girls that I got to experience "the handing off of the baton," so I know what it feels like.

Anyway, I am asking to hand off the baton to you, our friends. Most of  us do not like asking for help. We see it as weak or whatever, myself included. It was only lately I realized this was wrong. And what led me to think this is understanding that Keith "has" to ask for everything. So if he sees me feel bad about asking other friends for help, what might that mean to him. I'm not sure he is thinking about that at all because he is just trying to take the next step, literally, each hour. Plus he's not too into worrying about that kind of stuff as most of you know =)

So thanks for listening. You may not realize how much knowing you are there and here helps. Once I told  you guys we needed help, you did it!  Now to organize it and you've even offered to do that. For that and much more, Keith and I say thanks. We love you =)

Oh, if only.........................................

Oh, if only I could not vent in front of all of you, I might feel better. Oh, if only I would blog when things are going well. I could then prove to myself and the world that I am strong. But no, I post blogs when that which inside me has to come out. I do not feel strong, but these past two days have felt your strength and better than that, Keith's.

I will try to let you know how Keith is doing. Difficult at times, as the energy it takes for a lot of communication is draining. I want to talk and talk and talk to him because he is my strength, my best  friend and husband. He gives such wise advice. I do push (encourage) him to speak when it concerns  important issues like our family's needs. I want Clint and Kristi to hear from him as much as possible while they can.

All for now, Hopefully Clint will add more pictures. Thank you for reading. =)

Good News/Bad News (may be hard to read this one, sorry)

Hello everyone,

The good news of course is that the car wash was such a fun and successful event. The bad news is that I can't thank all of you individually. So again, thanks =)

Recently, I read about this husband who lost his wife a year ago, May to MSA. He says as the time went on he found himself blogging less. He had some specific reasons that I don't want to share with you but I can relate to what he said. Though we try to stay positive, our life is truthfully, not so fun. But are we suppose to have fun? Do we automatically deserve a fun life because we were born? I wish it were so. I soooooooooo want it to be that way. Day in and day out is becoming mundane. No, not everyday, but most. Yes we have some company but that has dropped off. Sometimes necessarily, as Keith is getting tired in new ways that don't show to others but do to me.

I'm venting as you can tell but also recording Keith's disease progression. You guys are not responsible for making us feel better but I thank you for trying. I don't know what we would do without this beautiful home we get to live in. Each day we are filled with love from all who live here. We get to hear sounds of laughter from the grandkids who live here and others who visit quite often. Precious ones! Sometimes, I feel that our heaviness hangs like a cloud over all who are near us. I don't want them to have to share it but they do want to help and for this I am grateful. I am also able to do some jogging and bike riding. This gives me a much needed break. Then I think about Keith, sometimes wanting to cry. He is getting out more but many times he is to tired after dr or PT appts to go anywhere. He does love his mochas and many times we drive through MacDonalds and get one.  He is still one of the best MSA patients around. He only takes one med and is maintaining some upper body strength.

I think I am down in the valley, no maybe just a small hill since it can get harder if the Lord has that in His plan for us. I need prayers. My devotional time with the Lord is great but so often interrupted for Keith business that I feel quite disjointed. I could not, however make it without His word and your prayers.

All for now, I'm sure the next blog will be more fun. =)

Thanks Again . . . and the total!

We want to thank everyone again for the Successful Car Wash Fundraiser! So many people helped organize, washed cars, and showed amazing generosity!

We raised over $5000 to put toward the Wheelchair Accessible Van!

 

Car Wash Fundraiser Pictures!

What an amazing day! It was non-stop from 8:45 to 3:30!

 

Herald Article & Van Pics

There was an excellent article in the Everett Herald about the Car Wash Fundraiser. Click Here to read the article.

Also, check out the new wheelchair accessible van!

Car Wash Fundraiser This Saturday!

Hello Everyone! This is Clint (Pam & Keith's son in case you didn't know!).

I have heard from quite a few people who plan to come to the Car Wash Fundraiser this Saturday! It should be a great day!

The info about the Big Event is:

What: Car Wash Fundraiser for Pam & Keith Johnson
When: Saturday, June 9th, 9am to 3pm
Where: Oso Lumber Parking Lot

301 E Stanley St
Granite Falls, WA 98252-8440
Why: To Raise Money to help pay for a wheelchair accessible van

I have also heard from quite a few people who are unable to come due to living out of town or because of prior plans, but still want to help out.

I know that any help you want to give would be greatly appreciated by my parents!

Their current address is:

7305 E Heather Way
Everett, WA 98203

Thanks,

Clint

Van Help............Please read =)

While in the process of looking for a van we were asked if a car wash could be set up to help with the expenses of purchasing it. While I mentioned that a generous amount of $ was given to help us, it did not cover most of the cost so I was encouraged to ask you guys for help.

So here are the facts. Handicapped vans can cost between $20,000 and $40,000 used  and $40,000 and $60,000 new. We are buying a used one that cost approx $35,000 and we owe most of that amount. We graciously and humbly accepted the car wash event.

Details...................June 9, 2012 at Oso lunber in Granite Falls................9am to 3pm will be a car wash to help with Keith's van cost.

We thank you ahead of time and hope to see you there. If you read this blog first, please read yesterdays. I think you will like it. =)

Better Days =)

Yes, I can say our situation is better. Thank you all for the prayers. I am now back to taking it one day at a time.

Several good things have happened. Yesterday, we were able to put enough money down on a van that it will now only take 8 years to pay it off =)  Thanks to the generosity of one or more of you anonymously, we brought it home. I've tried to find out who it is but my sources are tight-lipped, so I say thank you, thank you, thank you. It was very generous. The Lord bless you. The van has to have a special ordered part fitted to Keith's power chair and put in next week. Then our first stop will be the Everett Waterfront, a place Keith first introduced me to several years ago. We used to walk around and admire the beautiful scenery. We look forward to doing that again.

Keith continues to amaze me. I often wonder what good Keith and I are doing because we sure do a lot of nothing. But yesterday, after seeing the doctor, Keith spotted one of his former students as I was wheeling him out. He insisted on stopping. The young man pointed out that he was going to have a baby. My judgmental mind wanted to ask him if he were married. But Keith embraced him in such a compassionate way and encouraged him. He said, "You will be a good dad!" He went on to ask him about his current life and then told him what a joy he was to have in class. It was getting emotional as the young man seeing his teacher for the first time in a wheelchair accepted his love. We said our goodbyes. I was and am so proud of my husband who has shown this kind of  love and integrity since I have known him. No wonder his friends want to see him and be around him. They get to feel what I feel. So Lord, I ask you to show your Mercy and heal Keith. He has a lot more to do.

Now, for what the Lord has me to do. =)

WOW

Last week was a very difficult week, emotionally. I wanted to lash out at someone or something, sometimes every hour. Those closest to me, know I did some yelling and crying. Thank you for allowing that from me. I don't like those emotions to show but I learn from them. It's not everyday your husband ask you to re-marry after he dies. I told him I could never find someone like him. Then he said, "Try harder!" I couldn't continue talking. Too many emotions to contain in a conversation like that. By last Wed I was desperately seeking a support group for mainly Clint, Kristi and I to be able to talk freely without Keith. He certainly can come if he wants. Trouble is that there are no support groups for MSA so we are looking into ones for ALS which may be the disease most similar. Also, a hospice spokesman directed me to a bereavement specialist. Not knowing what to even ask her, thankfully she recognized that our family is indeed grieving and on a very long, slow and difficult journey. She suggested we three or all set up a meeting which I am in the process of doing.

 I get so many kind and loving comments from you our friends, but this one last week was so comforting. "As far I as I am concerned, you get a 'free' pass." To me, that meant that I would be loved no matter what. No matter if I get emotional. Kind of like our loving God, right?  I am so glad for the unconditional love shown me by all of you. Thank you.

Keith got his power chair. Sort of bitter sweet. We never pictured being a person in one of those. Now we need to look for a handicap van. But there is good news. Keith who was  hesitant about going places is now wanting to look at vans. The dealer brought one to the house for us to try. He couldn't believe Keith had the chair less than two weeks because he drove it right up that ramp and almost perfectly in place the first time. He now realizes we can go to places much easier with one. We are going to look at vans today.

Enough for now, and remember, our family and friends bring us much joy. Can't help smiling when you have grandchildren around!

Update on Keith

Finally I have something to report. I had been waiting until after he had his Physical Therapy appt. yesterday to post. Like I told you, he has been discouraged. But, yesterday I heard him singing for the first time in a long time. It was wonderful!  Also, his PT session went very well. He has some goals again and that appeals to the athlete in him. We didn't know if he would be able to handle PT because he has been so tired. So on we go looking forward.

I know the last post was hard but I need to be honest. Remember I said that this blog is a record for our lives as we take this journey. And seriously, I have not even told you of the hardest times. I may later.

Thank you for caring and coming over. Those cinnamon rolls are good Keith says. He likes plain cake donuts and animal cookies too. =)

Have a wonderful weekend. We plan to.

Still Embracing life..............BUT

I have to wonder why so many liked my last post. I think it is because it makes you feel better when you think or perceive me as being strong. I am telling you the truth as I discover this MSA road with its ups and downs I am not strong. I am weak.  We are trusting and trying hard to persevere but I have to tell you, it is HARD, so very hard. I know that perseverance will lead to proven character and proven character to HOPE  and HOPE that does not DISAPPOINT as it says in God's word. If we didn't believe it, I don't know how we would have made it this far.

It's one thing for Satan to attack me in my selfishness. I can work on that with your prayers and mine and knowing that we have victory over him. But to attack my family makes me have to dig to the deepest parts of all I know about the ONE who loves me, to prevent me from giving up. I think 3 of us had sorrowful crying times this week. That hurts, though cleansing as it may be. This disease is not only horrible, but goes on and on and as it does we seem to lose more of Keith and the kids lose more of their dad. I just need to be able to say it sometimes as do all of us who love Keith.

What can you do? Not much really. Keith is and never has been a very needy person. He has been discouraged this week at times. That doesn't surprise us does it? It's about time!  I must admit to you again,  that when you visit and talk or play a game with him makes our day go faster and we enjoy the time we have with you. Thank you for your visits. Bringing a donut or cookie is not even required but does bring a smile to Keith's face.

Special note to you Rob for coming from Seattle to see Keith. Also, I liked Caleb's music. =) He is a wonderful musician.

Embrace Life

Embrace life. Those are the two words the Holy Spirit led me to these past few days. I've prayed, hoped, pleaded, grieved and still do at times. Now, however, I feel I can lead this life the Lord has given Keith and I. What I've learned about myself and my relationship with the Lord is too wonderful to want to give up, even if I were able to go back to the pre-MSA days.

I know, it doesn't sound reasonable to most of you.  Being forced to look at yourself and life in a unique way is an opportunity that may come but is often ignored because of time restraints. My time  now is not my own. This is the part I am beginning to embrace. Instead of just "doing the 24/7" caregiver routine for Keith I am really "wanting" to do it now. I must say, the "selfish" me is putting up a fight. I guess the Lord just had to find a way to get my attention concerning this area of my life. Don't you know, that just when you think you have "conquered" a certain area of your life the Lord can show you there is still work to be done. =)

All of that for now. We have been in Everett about 3 weeks and I am feeling such freedom. Patti and Dave and the entire family have accepted us into their home with so much love. With the weight of keeping up a home lifted I am more relaxed. Even Pepper is more relaxed! I can easily leave Keith for awhile and go shopping since everything is so close. Quite fun. Hopefully we will go to a few movies.

The negative side is we miss seeing Clint and his family as often though they have come here weekly which we enjoy. We miss our church family and friends. To all of you who have come and visited, our days have been blessed by each one.  And Keith has someone besides me to play Farkle with.

Thank you to all who have supported Keith and I and our family. The thank you list would be too long to publish but we could not have done it without you.

More on Keith's health next time. He's ok.

Philippians 4:13

It's been quite an intense and tough week. April, Clint's fiance, has been in the hospital since last Thursday. She increased her medication with her Dr.s orders and ended up with a drug overdose. She couldn't move. We were very worried. They didn't know what it was for several days. The final conclusion was drug overdose, stomach flu that she didn't know she had and stress. She is home from the hospital and actually in her new home (ours =) which is already set up for her situation. They say her body needs time to rest and she should recover. Her family and ours want to give her that rest and have all pitched in taking care of the kids. Clint has been solid but both he and I cried (ok I cried but he wanted to but was being strong) when we saw April get up for the first time. It was like a stroke and it made me so sad to see someone so young going through struggling just to walk. I'll tell you this, she is tough and she will make it.

Now for what the Lord showed me. About 10 days ago I came to a point that I thought I couldn't make it. Life was getting so very hard and I was grieving for all the losses in my life. Satan had his hold on my mind and I was having trouble getting back to the guiding thoughts I needed for strength. Well, like so many of you know when you are at that point and continue asking for help from the Lord, he gives it.

The day I was so down, I was given a beautiful bracelet that said "I can do all things through Christ who strengthens me." I was such in a care giving mode and I could not get it on after several tries that  I put it in my purse and forgot about it until I saw my sister. She reminded me that the Lord is near and will help me and strengthen me. I said I don't even have the strength to put this bracelet on. She took it from me and fastened it. I can't described the feeling I had. It was like a warm embrace by the Holy Spirit. And as I have worn the bracelet since I kept repeating what was written on it and I again reminded that not by "my" strength but by "Christ's" strength can I do all things.

I feel great now,

No Hook =(

I was going to only give you a funny story about Keith trying to give everyone around him his " going to work" good shoes. Ok, I will.  So there he is asking all the guys in the family if they would like his shoes;  each trying so hard to be able to take them for Keith's sake. By the time he asked the 3rd one, I finally stepped in to tell Keith that most men do not wear a size 12 wide! We laughed at that. =)

But.......................................MSA awareness month is coming up and I am trying to make you and others aware of this disease. So I thought I would call a news station or two and ask them to write or tell a story about MSA. I called and when I told the news writer a little about our story, she said she was sorry but that the story had no "hook." She basically said it wasn't exciting enough or bad enough or enough people involved in a fund raiser to make it "newsworthy." I thanked her for her honesty and that I understood, but I really didn't. MSA has affected our lives so much. I wanted to shout, "Do you know how it is to live with MSA?"

Anyway, the following is a post by a friend who is part of the MSA network of friends. I thought I would just let her words speak for me. Basically it is asking everyone to vote for this short film talking and showing a woman's mother and the progression of MSA. A warning, however, I watched it and it was hard. I don't even want Keith or our kids to watch it. But if you can, I know it will raise awareness of what those who have it and the caregivers living with MSA deal with daily.

Thank you all. We love you

Pam Bower

You guys are awesome the MSA film is in FIRST PLACE today!!!! Keep up the momentum.. encourage everyone to vote and ask friends to ask their friends... and so on and so on. If anyone has trouble voting post a note on this event page and ask for help, someone will assist you. http://www.facebook.com/events/330160207029281/

VOTE for the MSA film in the Neuro Film Festival

n

I miss my husband

Maybe I should post later, but this is how I feel. Oh I know Keith  is here and I am grateful but I just want the old times back sometimes. I just want him to take out the garbage, drive the car, take charge of our lives, help with the move, be able to get his own water, napkins, pills, coat, etc and cook. He is a good cook. =) In other words, I'm whining!

I suppose I am tired with the move. Truth be told, on all the other moves I did all the packing anyway. But I could always call Keith to move boxes from here to there. You know what I mean. It's hard doing it alone. Thankfully so many friends have offered to help move on that Saturday. I just want to make it as easy for them as I can by having our things all boxed up.

On a happier not, Keith had a birthday that just wouldn't quit and it was fun. His "farkel party," was great with about 30 friends showing up to celebrate Keith. I am continually surprised, though I shouldn't be, by the wonderful comments I get about Keith. Often people tell me how he has impacted their lives in a positive way. You have shared your tears with me in compassion and I know you care and are so sad that Keith has this disease. Your thoughts and prayers are our treasure. We thank you for caring in tangible ways.

All I can say is, "You gotta love this guy."  And I do!

Feb. 25th, 2012...............Moving Day

For those of you who don't know, we are moving to Everett, WA.  As you can see,  moving day is Feb. 25th, about 6 weeks from now.

Through the generosity of my sister and her husband, we have been invited to share their beautiful and large home.  As we speak, they are building  an additional bedroom equipped with a handicapped bathroom to accommodate  Keith's . Also, living in Everett  we will be closer to  anticipated future hospital  and dr. needs. We cannot thank them enough.

Bittersweet it is. Granite Falls is the longest place we have lived. Going on 16 years, we have thoroughly enjoyed it.  We've  met so many wonderful people. You have given us such overwhelming love and support,  it will be hard to  find that again.

The Lord has guided us through this decision and we feel good about it. But you better come and see us sometime. =) You WILL be welcome. If you knew my sister and brother-in-law, you wouldn't even hesitate. They are generous and display an example of God's love that I have seen few times in my life.

Until later, and maybe even in Everett,

God is near in the midst

I know it isn't easy, but I feel compelled to record what is happening while we live with MSA. Both the good and the bad.

However, I must say that God is here  in our midst. Through it all we have found great peace knowing that we are not forgotten by our heavenly Father.

We certainly have our ups and downs. Keith is doing well. He walked down the ramp using his walker. And this morning I glanced over at him thinking he was having trouble getting up from his chair only to be happily surprised to see he was doing exercises he hadn't  been able to do for weeks =) He is in doing the elliptical right now. I better go see if he needs help. Too late, here he is already done and ready for a snack. He has earned one indeed!

All for now,