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

Summer, Surgey and Support

This summer Bob has made it his business to be as involved in our church as much as he can. He has been a helper in the children's bible study classes. He isn't able to teach the lessons but he can read the scripture and participate in the conversation, somehow the kids just soak in every word he says. It was quiet enough to hear a pin drop when he was reading and this was in a room full of 22 5th and 6th graders - no wiggles either!

We also as you have seen in a previous post gone to Ashland, Oregon and rode the Hiawatha trail in Montana on the 4th of July, and aquired a van. We are planning to go to Port Townsend for the Wooden Boat Festival and maybe to Calif for my HS reunion. So the summer has been busy but along with all this busyness has come some health issues.

In the middle of July we had our fisrt heatwave of the year and we weren't prepared for the effects of it. Up til now he has been fairly resilliant regarding heat but this year he beame ill, also our AC was not functioning properly, and we wound up in the ER with dehydration and other complications - no big deal but definitely a cautionary experience. So we got home and were hydrating and trying to keep him cool and his gall bladder went south.

Bob has a high pain tolerance- always has- but I think the disease also helps block the pain receptors to an extent, at least so that what he calls an 8 we would call a 16 pain level. So when he says he has pain I need to pay attention. Granted he is always in some kind of pain and it can get old and I can get desensitized to it, but when he really starts to complain I need to not dismiss it so quickly as it could be VERY Important.

I took him in on a Thursday evening and by 2am Fri they admitted him and he had surgery by about 1pm. The doctor said it was just about the worst gall bladder he had ever seen and they kept him for 4 days. Even then he was still in pretty bad shape and the first few days at home were very intimidatuing for me. It was also a wake up call as we are not really prepared for what he will need as his disease progresses. Our home is not handicapped freindly and we are going to have to make changes if we wish to be able to continue living here. A ramp, a hospital bed, remodeling the bathroom, rearranging the living room to make room for wheelchair accesability and so on. As quickly as the gall bladder came up and upended our lives who knows what else will come along, how quickly and how unprepared we will be for that? So now is the time to make the changes, now before we desperately need it and trying to find a solution in a time of stress is overwhelming case in point----

We live on the secound floor. There are stairs on the inside from the office to the apartment. There are stairs on the outside from the ground floor to the private entrance to the apartment. These stairs are both narrow and one has a turn. We also have access to a locked parking lot behind us that is at the same level as the apartment - however there are 4 steps, a landing and a step up to croos th threshold into the apartment.

That's the setting. I had him transported home from the hospital by ambulance and we arranged a Wheelchair Specialty transport back to the Dr for a post op. I can not believe that I had an argument with the "Services" people. They actually count how many steps they are allowed to transport the pt up. I wanted to yell at the that if it was easy I would not have called them. I will refrain from posting all the drama that ensued, suffice it to say this was not, I repeat not, the time to have to have these conversations, I was absolutely wiped out by all the stress of his surgery, going back and forth to the hospital, working ect ect ect.... They are so lucky they all still live. So for our sanity, safety, spiritual witness and future dealing with "Services" we will have to make changes now. And these changes are in the making as we speak.

What I have discovered is all the amazing support Bob and I have. The Church has been great, people have visited, others have donated supplies, a dear young man came and spent an evening with Bob so I could go and  produce a skit for VBS. Alexander is a high schooler, he made sure Bob was served his food and they hung out together, dualing laptops, watchng old Roy Rogers serials and visiting. He's such a cool kid. I also found a blog that I am working my way through reading the last two years worth of posts.

I googled Christian caregiving and found a blog from a woman who is writing to caregiviers after the death of her husband. As I read her posts I discovered that her husband also had MSA. Wow! I really appreciate reading her posts they are a comfort and a blessing to read. She is one of the few people who truly knows what I am going through and what is ahead for Bob and I. I can't help but think that this may be one of the most valuable tools I have found to date. Thank you God for leading me to it.

The Blog Christian caregiving is listed on the sidebar- pleas go and read it, especially my fellow MSA caregivers. She is so kind, caring and a thoughtful writer, her words will bless you.

And that's our summer vacation and how we have spent it - Have a great Fall!

Recapturing an Old Joy

During the last several years every time a summer holiday would arrive I would greet it with sorrow. Bob and I had always been very active in outdoor activities. Whenever a Memorial Day or Fourth of July came around you could find us river rafting, water skiing, hiking, camping, sailing. But that had come to a halt one Memorial Day Weekend -first with Bob's Adrenal gland tumor that landed him in the ER and later the Cardiac Care unit for a week. This led to many holiday weekends that we stayed at home not knowing if we would ever have those outings again.

I remember one such holiday I just wanted to get away. Even if it meant a antiquing junket in a nearby town. I called a friend to see if she wanted to join me, but she and her husband were loading up their kayaks to go down the river. I just sat in my car and cried, mourning the loss of doing just that very thing with Bob not so long ago. I went home and did the laundry.

For awhile Bob was able to cope on his own for an overnight and even a weekend and in my job I was sent to do PR at yacht club outings to the local lakes and rivers. It was so cool to be able to get out and back on the water, but I missed my Bob.

But I am here to tell you THIS YEAR was different! Because of some of the ways we have learned to cope, some nifty gadgets, a surgery, and a new (to us) Van, Bob has become more of a traveler and adventurer again. It all started with the scooter and our trip to Port Townsend. This year for the Fourth of July we biked/scootered the Route of the Hiawatha trail. This is an old railroad route that has become a trail ride/hike. It's on the Idaho/Montana Border about 90 miles from us. We loaded up the scooter and my bike in the van and off we went- It was just like the old days - sort of.

                                       The new van, my 1980's bike and Bob on his scooter

     At the Begining

 This tunnel is just under 2 miles long and very very spooky

 Go Bob!

 He had to stop and read every sign :)

 Some of the flora

 The Vistas

 The Mud from the tunnels

I can't begin to convey how I felt. To be out in the woods on an adventure with my best partner in crime once again. It was the best medicine ever!!! So we had a few changes in our approach and we didn't make it down the whole trail but we had such a great time, just us, the woods and fellow adventurers we met along the way. because it is all down hill to the shuttle buses (15 miles) we had to ride uphill back (6 miles) I was very grateful that I joined a gym and have been working out this last year as I was able to manage the ride back just fine. Until the next day and I bought stock in Epsom salts.

 Bob says that he had a great time too, but then analyzes how his scooter was/was not built for that and found the ultimate scooter on the Internet that would be perfect (cue Tim the Tool man grunt). He thinks we should try the Centennial Trail next time - it's paved and soo long that we can pick either a more urban or woodsy path according to how we feel that day. And it's a bit closer to us.

I know that this window of adventure will not be here to stay and could be quite short, so we are doing our best to maximize the opportunity. We have no regrets for things we didn't do as we really have done a lot, but we approach these adventures as times to savor and gather them up greedily.

We are not quite ready to pack it up and call it a day, and we are planning more places to go and people to see. sometime this summer I hope to get him out on a friends sailboat. Stay tuned for more adventures of Bob and Susan :)