Sunday, August 28, 2011

Rough week

Some weeks are filled with discovery, others just day to day stuff and then there are weeks that have significant milestones. MSA progresses much faster than Parkinson's Disease, however both have stretches of status quo and periods of dramatic change. Neither progresses in a manner that you can say- Oh! we have moved into the next phase. Every patient has a mixed grab bag of symptoms.

 I go regularly once a month to a care giver's support group and between the combined knowledge of the group I learn about a lot of things that we could be facing. I could let this freak me out, but because it is a group I have learned that everybody has a different reality and that he probably won't get all these things. What helps is that when something does happen I can see it and know why it happened. This brings me to the first thing this week.

#1 - Bob fell.  Let me allay all fears - He is fine and didn't have to go to the ER. It was the classic middle of the night, had to go the the bathroom fall. Because he hit his head (and has a small gash) I called  911. I have decided that I am not messing around with his care If he had fallen on the carpet and didn't appear to have any problems I'd have hefted him up checked him out and let it go. But 3am, head and blood - I call the paramedics. I always look for the benefits in a situation and even in this I can see it. The Fire station is across the street from us. I have previously gone over and made a report about Bob so they would have a clue. The minute I called they knew who and where we were (and not just because it was on their screen).

The Benefits? - They got to meet Bob and asses him personally. They got a look at the apartment and realized the challenges they would be facing if he had needed transport. Besides the non accessibility of the apartment you don't want to bring the Firetruck into certain driveways between buildings, so they learned how best to arrange the vehicles. Believe me they were actively inspecting options because... They knew they would be back. And that was the hard thing. They will be back. Fortunately this was a relatively minor incident and so we were able to make the most use out of it. Oh and Bob was really impressed with the treatment he got and less likely to be reluctant to ask for help when we need it.

The next day Bob and I talked about it. Why did he fall?  He told me that as soon as he entered the doorway his leg stuck or "Froze". Because of the support group I knew that often doorways present a challenge to PD'rs. For some reason they often freeze in doorways and because he was hurrying he still had some momentum and when his leg froze he could not recover and he went down. So we talked about ways to help cope with these kind of situations.

So tough thing #1 coping with falls, having to call for help and realizing - this is just the beginning.

#2 - My parents are getting older and it is never a good thing when my sister calls on a Sunday afternoon. My mom is currently staying overnight at the hospital for tests and observation. She's fine for now but she was having significant chest pains and they aren't playing around. Prognosis? - Likely a change in meds possibly a procedure. Appears to be an early thing that detection will prevent a more serious event.

I must say that my sister is an awesome guardian of my folks and I so appreciate that I can count on her to manage their situations while I focus on Bob and I know that when it's imperative she will let me know if and when I need to come to Portland. I could feel guilty about being so far away - but I need to look at it as - we are a team and she is doing her part and I am doing mine and when we need to consolidate - we will. I thank God for siblings who are so competent and easy to work with. Well behaved, well loved and loving God what an awesome family to belong to!

#3 - this one is subtle and because he doesn't read this blog I can express my concern here.Memory is a very complicated and multi layered thing. He has never had a great memory for stuff like names, and short term things ect. He has a photogenic memory for his profession. In his mind he can project on the wall any schematic he has ever seen. That's one of the reason's why he is so good at fixing things. This is why I nurture his computer addiction and why we benefit as much as the people who bring their computers to him. It's his therapy, it keeps his brain working and uses areas of his memory that are firmly embedded in his brain. By the time someone is diagnosed with Parkinson's and then later MSA there is a neurological loss that can be up to 80 percent.



So - it's been a tough week but it's also been filled with the Love of my community and God's people. I had some wonderful times of recharging and respite with my Ladies bible study. I received some recognition for a huge creative project I did this summer that was unexpected and flattering to be so recognized. And several people have told me that they appreciate me and my testimony as a caregiver for my husband. It always amazes me how other's perceive me and it's nice to know it's not as bad as I would think :) Sometimes their perspective is something I hadn't realized and it can be enlightening to see a different perspective of yourself.

God provides the nourishment that I need as I travel this earth and I will continue to hold on to his hand, put my roots deep into his everlasting water and live the best life that I can and hope that it brings praise and glory to him.

Thursday, August 25, 2011

My Best Intentions: Musings on dealing with people offering alternative treatments.

Earlier I wrote a blog about how Bob and I felt about Alternative treatments. I needed to hash it out and write it down so that when we were confronted with those who are passionate about whatever miracle cure they have found we could make our statement, clearly concisely and well thought out and then they would understand and go their way.

Recently I had the opportunity to execute this plan. It didn't go well. The petitioner continued to push and finally I caved and allowed the information to be mailed to me. A week went by and I was called and asked when I wanted to schedule a phone or face to face consultation. I refused again, stated our beliefs and reminded this dear passionate person that I had expected the info in the mail.

A week later I received said material, scanned it and our minds were not changed. We have encountered some of the proscribed items and found absolutely no benefit whatsoever. Maybe it works for someone else but truly we tried and it was nothing... So I filed it away, not quite ready to dispose of it and hoping that was the end of it.

A week later I received a phone call. "Did I get it?' they asked. Yes, I replied. Maybe after a little chit chat the topic will end. "Did I read it?" Uhm... I scanned it. "What did you think?" It was pretty much what I thought it was and we don't think it will benefit us.

I was trying, really but there appeared to be no way to get off this merrygoround. So I resorted to blunt - I'm really sorry that you have put so much effort into this but I have been trying to get you to see that we are not open to this. We have our reasons and I only agreed to receive the info in the mail because you insisted.

Instantly, they saw the light. Unfortunately they were embarrassed. It was what I was trying to avoid. I felt really bad. I don't want to hurt anyone, but they weren't listening. I appreciate everything they were trying to do. I'm glad they are finding relief with their system, but everybody has their own journey to take and even some boundaries that they won't cross and if that can't be respected, someone is going to get hurt.

There is so much stuff out there. We do have to be careful and responsible. Maybe Bob and I will miss something that could help. But I would rather ere on the side of missing it than becoming involved in something that would not honor my Lord and King. I know who is in charge of our lives and I will rely on Him to guide us in this journey and I know that He will make sure that we have everything that He has prepared for us because we are His willing servants and we will glorify Him in abundance and in need.It is not our decision if Bob gets well, it is God's decision, filtered through his purposes and His Devine Will.

Wednesday, August 24, 2011

Laura Story Blessings (lyrics)


My new favorite song By Laura Story "Blessings"

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching(s) of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Laura has an incredible Story:

In 2006, a trial entered Story’s life that would not only provide her with a deeper understanding of God’s sovereignty, but also serve as fodder for the songs on her new record. After one year of marriage, Story’s husband was hospitalized with a brain tumor.

“There was a time he was on a breathing machine and we weren’t sure he was going to make it. I spent my whole life singing, ‘’Tis so sweet to trust in Jesus,’ but until Jesus took me through something where my only option was to trust Him, I didn’t really know that sweetness,” reflects Story. While supporting her husband through surgery, radiation, complications, and intense physical therapy, Story has composed new songs with meaty, real substance that have ministered to her as much as they will minister to her listeners.

“It’s hard to understand why God would allow us to go through this, but I know He works all things together for good, and I feel my new album is reflecting that. Though He leads us through valleys, that’s when we get to trust Him and draw closer to Him all the more. Though I’ve doubted, His grasp has never released, never slipped. He’s remained completely faithful to me. He has proven that He really is my foundation and my hope.”

On a regular basis, Story gets to share this hope with the 100+ women she ministers to through her job at Perimeter Church; and it’s not a job she’s giving up anytime soon. After all, the opportunity to pour into others’ lives and treasure each moment reminds Story that she is just a passenger on this remarkable journey.

“Mine is not the perfect voice or the perfect life. My life is as messy as the next person’s, and God is using me to speak to the church. For this season of my life, God has really blessed me with some insight into who He is and what that has to do with me. For some reason He just gives it to me in song form.” (reprinted from "Lyrics Hall")

Tuesday, August 9, 2011

Bitterness

I was 45yrs old when my husband first became ill and 49 when he was diagnosed with Parkinson's Disease and 51 when we were told that He really had MSA, that it was terminal and his life span had been shortened considerably. For a wife to have to face the realities of becoming the caregiver of a disabled and terminally ill husband - this is very young.

We had hopes and dreams and plans. We were active and adventurous and free spirited. Hopes of working together, dreams of following the sea, plans to rebuild our finances and maybe own a home or a boat again. We worked on a Lake cruise boat and took vacations with just a tent and no plans. We met amazing people and had amazing experiences. And then we got stuck. Confined to staying at home and putting everything on hold, not knowing what was wrong and at every stage it kept getting worse until we knew that our life would never be the same again. I always thought that the life I'm living now couldn't happen for another 30yrs. I was wrong.

So as we settle into this life we now have - people are curious and they ask me questions. "How do you do it?" "Is he hard to care for?" "Does it bother you?" or they offer well meaning sympathy "That's so sad, and your so young, I couldn't do it."  What they want to know is am I putting up a "Good" front on things or am I really the happy woman I seem to be and if so How? How come I'm not angry? How can I do what I need to do and give up those hopes and dreams we once had and not be - Bitter?

I was - Bitter. I was - Angry. Especially through the years when we had no idea what was wrong or if it would ever end, and I fought giving up my hopes and dreams. My family will tell you I am very goal oriented. I conceive of a plan and then I work to make it come to pass. I used to say - give me a plan and I can deal with anything. But I wasn't planning on this and there isn't really a plan you can focus on, we don't know how this is all going to move along, Ultimately all we know is right now and what the end result is, all the in between is a mystery.

But I can tell you that I am no longer- Bitter. I am no longer - Angry. Don't get me wrong, I Grieve, and I get tired and frustrated and sometimes scared. Every time we have an episode I wonder if this will pass or if we have entered into a new phase of "Reality". Thankfully God was grooming me for this journey, and even when I had not quite "Got" the lesson, I was beginning to follow the lesson plan and incorporate it into my life.

So this morning during my quiet time it all came together. I love it when you explore the word of God and see an amazing truth and you can say "YES!" that's what it is and yes that's what I'm learning to do!

Jeremiah 17:5-8, 13
A curse on the man who puts his trust in man,
     who relies on the things of the flesh,
     whose heart turns from the Lord.
He is like dry scrub in the wastelands:
     If good comes, he has no eyes for it,
He settles in the parched places of the wilderness,
     a salt land, uninhabited.

A Blessing on the man who puts his trust in the Lord,
     with the Lord for his hope.
He is like a tree by the waterside
     that thrusts its roots to the stream;
when the heat comes it feels no alarm,
     it's foliage stays green;
it has no worries in a year of drought,
     and never ceases to bear fruit...
Hope of Israel, Lord!


So here's what stood out for me:

"He is like dry scrub in the wastelands." - dry, bitter easily burnt up weeds - nope I don't want that.
"He is like a tree by the waterside." - green and bearing fruit - yep that's what I wan

What's the difference?

"A curse on the man who puts his trust in man."  -VS- "A blessing on the man who puts his trust in the Lord."

What are the results in each choice?

"He settles in the parched places." Dry , bitter and alone
""When the heat comes it feels no alarm, it's foliage stays green."

Even though the bad times come, and they will (It says so right there 'When the heat comes') we can avoid being dry and bitter and revel in being green and bearing fruit. I can be free from worry even when there is a drought by trusting in God's provision and I can bear fruit by glorifying God and caring for my husband and not letting bitterness in. I believe that I am learning to do this and God is in the process of perfecting this attitude in me. If you haven't heard how God has been working in our lives please read the previous blogs that go into a lot of detail about His provision for us.

We are in a drought, a terminal illness, God has provided abundance in family, friends, jobs, home, medical, finances and church. But the biggest blessing is relying on him and enjoying my time with Bob.

So "How do I do this?"

I am a tree that "Places his trust in the Lord, with the Lord as his hope." and that is "Planted by the waterside that thrusts its roots to the stream."

My roots are planted in the Word of God, He is the one that has living water.

Jesus said that he had living water to give us. John 4:14
"but whoever drinks of the water that I shall give him will never thirst. But the water I shall give him will become in him a fountain of water springing up into everlasting life."

How can I be bitter if my life is well watered by the Word of God that provides living water as a well springing up inside of me? Water that keeps me from thirsting and gives me everlasting Life?

So to answer the questions in the beginning - I "Do it" through reliance and trust in God. I'm not bitter about how it isn't fair that we have to endure this "Drought" so young because I plant myself in the Word of God and His living water sustains me. Bitterness and Anger have no place to sit in my life because I bubble up with the Joy of the Lord. My prayer is that I continued to dwell in His word and never withdraw my roots from His streams.