The Slope is getting slippery

Sorry for the gap, Bob has been having a tough 8weeks.

 Up until now Bob has been steadily but gently declining, each year I can see that he has needed more and more help but it hasn't been so dramatic or burdensome. One year he can get in and out of bed, then he needs help a couple of times and months later you realize that you are helping him every time and he seriously can not move around in bed without help. Bear in mind that I try not to offer assistance when he truly dosen't need it, I don't want to start him down any paths of dependance until it is truly needed.

But recently it seems that we are in that place where things seem to be accelerating. Since March we have had at least three serious events and I'm not sure when the next one is going occur. Or even what that will be, although I know of a few things that could go south really fast. So I am getting more help and getting Bob to start accepting care from others in even the more sensitive things. He is a very modest man but I just can't keep doing it all and it is getting more and more taxing. So the downword slide is getting steeper and we are rolling faster.

I will fight to keep Bob as healthy and happy as possible for as long as possible. I don't see an expiration date on him anywhere and I am not "giving in"  or "giving up". I will keep my roots solidly in God's word and my relationship to Him fresh

"It is of the Lord's mercies that

 we are not consumed, because His

compassions fail not.

 

They are new every morning: great

is thy faithfulness.

 

The Lord is my portion, saith my

soul; therefore will I hope in Him.

 

The Lord is good unto them that

wait for Him, to the soul that

seeketh Him." (Lam 3:22-25)

 

I believe that God has been preparing me since the begining of this journey. He has whispered in my heart, giving me an inkling of what is happening, comforted me by showing me encouraging scripture.

 

"Every place that the sole of your foot shall tread upon, that have I given to you..."

Joshua 1:3

 

 

Giving me strength and support, security so I can concentrate on Bob's needs and know that mine are being taken care of.

 

I am often asked how I can be so cheery, strong, positive. I'm not always, I am a human, boistrus, Irish redhead who can go from nice church lady to a sailor in a heartbeat. But that's the beauty of my relationship with God. He knows, He gave me all the character traits that make me both a wonderful caregiver for Bob and that crusty little sailor. My job is to allow Him to guide me and prepare me for His work, this life, Bob's care and forever after with him.

 

So here we are, the rock is picking up speed, we are keeping close to God and hoping for a really good long run. 



 

Wear Purple!

March is MSA Awareness Month!
The Ribbon color is Purple!

All across the US- MSA warriors are petitioning their states to, first, make a proclamation of March as MSA Awareness month and then to push it forward into a state law. Many have reached the proclamation stage, a few are already state law. I would give you a list but I haven't seen one, but I do know that one is currently being created and I will include it later.

The difference between proclamations and the laws is that the proclamations are only for that year while the law makes it permanent.

When Bob was first diagnosed with MSA I found very little info and support out in cyberland. I continued my association with the Parkinson's Resource Center here in town and still count the caregivers support group my mainstay support along with the wonderful people in my church.



Gradually through social media I have met and connected with others in the MSA community and watched it become more and more active and persistent in raising awareness of this rare disease.

What is MSA?

MSA is a rare neurological disease that affects about 15,000 people in the US. It is considered a degenerative disease that affects one's balance, bladder, bowls, blood pressure, speech, swallowing, sleep, breathing often accompanied by muscle rigidity and tremors. Most often patients are misdiagnosed as having Parkinson's disease. To find out more check out the press release posted on http://www.msaawareness.org/


How can you help?

• Wear a purple ribbon and when people ask what it's for tell them about MSA.
• Help us raise funds by purchasing the beautiful awareness products produced by several of the MSA warriors. Many of these people are the caregivers of folks with MSA and they are making beautiful- T-Shirts, hats and bracelets that help both make MSA visible and the funds go to help support research.

                    T-Shirts and hats              bjconnelly@netnet.net

                     MSA awareness bracelets  msaawarenessbracelets.weebly.com

• Pray for both a cure for MSA and for the provision of everything that people currently dealing with MSA need.
• Keep in contact with those you know that have MSA. They can often become very isolated and social interaction is an amazing lifter of spirits, both for the person with MSA and the caregiver. 
• Write to them - the caregiver can read the letters and cards to them, let them know they are not forgotten. and don't forget the caregivers.
• Treat the caregivers- the better spirits they are in the better care they can give.

Many people have asked how they can help me and have even offered to take over caring for Bob while I get away. I really appreciate the offers and sincerely think about how I can accept the offers. Getting away for a few hours is do able, but we are always mindful of the intensely personal care that can be required that involves extreme trust and can limit our ability to accept the offers. So if you offer and truly want to help don't be dismayed if it takes me awhile to figure it out. I do want the help, I just have to figure out how to arrange it.

Case in point. A man from my church offered to spell me for a bit and the end result is that he will be taking Bob to our men's retreat. The retreat is located at a conference grounds about 45 mins away. An overnight is not impossible but it would require a LOT of packing and I would have to attend. But I can get him ready and hand him off to the men of this church who can bring him home Friday night and pick him up again Saturday morning. I am confidant of his care because Jim is familiar enough with Bob and several of the men attending are paramedics, nurses, doctors and emergency responders. He couldn't be in a better place and I can be relaxed while he is away. Also we have product that we can use during the day that can alleviate the need for "embarrassing" moments.

I am excited to hand him off to the men of Crossover Church, both for Bob and for the others. There is as much joy in ministering to others as there is in receiving the ministries. Both will benefit greatly and who knows how God will work in this outing.

I know I started this blog entry as a way to promote MSA Awareness month, but it seems to have morphed into a Bob Awareness tutorial. Funding for research, finding therapies that help those who have the MSA now and looking forward for a cure for the future is very very important, just as important is caring for those who suffer with it now. So I guess this post is  truly all about raising awareness of MSA to find a cure and to minister to those who suffer.

So don't forget to wear purple for MSA and Bob Awareness month!!!!

One of my favorite pictures of Captian Bob taken shortly before MSA entered our lives

Life, Monster Trucks and MSA Awareness

Sorry I haven't posted in a while, ever since Bob's surgery in August, I have just felt a little out of step. Whenever you go through something as traumatic as his gall bladder surgery was it's kind of like a tuning fork - once you hit it it takes a really really long time to stop quivering and towards the end it's so subtle that most won't even see that it's still vibrating.
Somehow though I feel like I am beginning to get back to some sort of normal or back to a healthier place.

One way to tell that we are getting back on track is when we get moving and do something "different". It's usually something relatively spontaneous, a little wacky, lots of fun and usually has very little cost involved. This tendency of ours has led us to some very interesting places and kind of our signature approach to life. The last few years we have been a bit limited because spontaneity is a little difficult with the logistics of a chronic illness.

We have an early morning news show called "Good Morning Northwest" that I like to have on in the background of my waking up ritual on an occasional morning. On Fridays they have one of their anchors at a "secret" soon to be revealed location and they have some sort of give away. Two weeks ago it was just a few blocks away at a local car dealership and they were giving away tickets to the "Monster Truck Jam". So I screwed up my courage, banished my relunctance to get dressed and go out into the dark cold of an early snowy morning, and drove to the spot and got two free tickets to the event.The one compelling reason that I used to convince myself to go was that I really like the anchor that does these "For Free Friday" things and March is coming.

March is MSA Awareness month (Everyone wear purple!) and many of the MSA sites that I frequent have been making a coordinated effort to get the word out. As a result we can download a professional press release and packet that has all the info you need to pass on to your local media and lawmakers to promote MSA Awareness. so I booted up the computer, printed a copy and off I went.

So now I have done my civic duty and scored some tickets.

And on sunday we went to "MONSTER TRUCK JAM"!





We had a great time! Back when Bob was a teenager he was very involved in racing, and we have always enjoyed going to the occasional sprint car race, watching Formula 1 on TV, and Bob loves to watch the tractor shows on the Rural TV channel. So at the begining of the show they are all reving their motors and the whole place is just vibrating with sound and he starts to cry. I was a littled worried it was because his ears might be too sensitive (he did have ear protection) but he said he was just filled up with memories and yes he was enjoying it.

Often times Bob has difficulty with facial expressions and to those that don't know him he can look like he has a mask on, but on that day there were some very definite expressions of joy that crossed his face and it was a very precious thing to see. What a wonderful day, a simple thing that became a very bright memory.

We need these bright momments, because sometimes our reality can really suck. Lately we have had some health challenges and last week our MSA community lost a very dear man to this awful disease. Bob and I will be traveling to Everett with Kym Crowe (who lost her mom in Nov) so that she and I can attend the services. Kym makes these amazing MSA Awareness bracelets to help raise funds for research.

MSA Awareness Bracelets made by Kym

 

 

 

I know Kym is still in the throes of greiving her mom and I too have been impacted by his passing.  Keith was a believer and I am so glad that he is at rest and in God's care. Pam however is now faced with his loss and we go to wrap our arms around each other to offer comfort, understanding and love.

 

Pray for us on our journey and remember that:

 March is MSA Awarenes month and wear purple for Connie, Keith and Bob.

 

Perseverance

Recovering from His gall bladder surgery has been difficult. As most surgeries are for patients who have a neurological/movement disorder disease. Mostly because in a major surgery they have to put all of you completely asleep and that includes all the muscles and automatice systems that have a tough time performing on a regular basis. Also no matter how good the staff is the regular schedule and dosing of meds is not quite the same as at home. Then there is always the wait and see if any of the sypmtoms we are now dealing with are going to be permanent, a new "normal" as it were.

The challenge that we have been dealing with is called Orthostatic Hypotension (Spelling?). What that means is his blood pressure becomes non-existant and he passes out. While he is still concious, he is
non-responsive. This happens to be very much tied to his postural position and occurs mostly when he is sitting or has been standing for too long. The minute however that I lay him down in a prone position he is awake and talking- it's almost instant.

So we evaluate. Is this just the path of recovery? Is it a residual from the Anesth/pain meds? Is this a new symptom we have to learn to cope with? How do we cope with for now and in the future? Well The answer to the first question is wait and see and we hope that this is all it is, timje will tell. Same for the secound question. The third and fourth question - assume that this is the case, do your research, try different approaches, have patience.

We learned that his biggest challenge was in the morning, when he is still waking up, his body is taking longer to do so and he never was a pop up and be chipper man on the go kind of guy- so - Give him a chance to be fully awake, sit him up in the new adjustable bed and give him "special" fluids. That means 2 8oz cups, one of water with benefiber and one of the "Power" drinks, along with his morning meds. This will take about an hour.By then he is ready to get dressed and out to his chair avoiding the bathroom as that has it's own inheirant dangers in the mornings. So far we have been successful and we have had limited incedences of the passing out as opposed to so many we could hardly move out of bed.

It's now been 30 days since surgery, his meds have been stabilized and we are having fewer issues, but they still occur so perhaps in some degree we have a new normal and while we have learned to cope with them we do know that there is a med than can also help us with controlling it and we will probablly have to add that to the list. This comes as no surprise to us as Hypotension is one of the distinguishing symtpoms of this disease, we were just hoping for a bit more of a reprieve from it becoming another symptom to deal with on a daily basis.

So it has been a long and trying month, but with patience, thought, research, support and prayer we have made it through and we are now going to go and enjoy the Port Townsend Wooden Boat Festival. Pictures to follow