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 :)



Changing Roles

When Bob and I started out married life he was in the Navy and as a Navy wife whose husband was often out at sea in the days prior to all the electronic gadgets we have today, I was the one who handled the finances. Also Bob first became dependant for me to drive him when he had an adrenal gland tumor about 12 yrs ago and because of the symptoms he was unable to drive. so as we progressed into the diagnosis of Parkinson's and later MSA I did not need to exert control to be involved in his care, Dr.s visits, medications, finances, insurance and driving. I have heard many stories about interventions regarding driving, and being shut out of the loop regarding meds and care. Fortunately we did not have these issues. So I thought I had gotten off easy in regards to becoming the primary decision maker.

But I was wrong. Even in the best circumstances changing roles can be very difficult. Case in point - we need a different car and we found ourselves in a power struggle.

I had done a lot of research to assertain what would be the ideal vehicle for us and had settled on three models. A Toyota RAV, a Honda CRV or a Subarau Forester. I wanted a AWD SUV wagon. One that would be fairly low to the ground so Bob could get in and out easily and that had a cargo area I could easily pop the scooter into. Finally this was the first car that I would be purchasing for me. It will be the car I have when bob is no longer here. I needed longevity, easy maintenance, the approval of my mechanic, and let's face it Ladies a certain "Style" to it. No van for this Chica. I want a pretty color, style, paint and upholstry in good condition and.......a Sunroof.

As Bob started to travel more and began to see the need for a new vehicle He started expressing his opinion. As we would travel to church and other junkets I would find myself rejecting multiple declarations regarding what kind of car we should get. I had to constantly defend my choices. I had already spent many hours on the research, Bob was just getting started.

Now I want you to know that Bob is a very intelligent man and he has some great input, but what a man wants in a car and what a woman wants are DIFFERENT. Bob is also very much a function man and not a form guy. Long ago in our marriage I had to put my foot down and tell him that I didn't care what contraption he jury-rigged up but my rule was it had to look good. I felt that these conversations were re-inventing the wheel, I had already done the research and come to a conclusion and I admit to some annoyance that he wouldn't just accept my results.

Part of this strugglei s I am begining to learn how to make these decisions  on my own. There will be coming a day when I won't have Bob, with his expertise, to help, and I am begining to excercise these new skills.This is a time of transition, I am learning and he is having to let go, this is never easy and the reasons behind it greive us both.

So- the resolution has been reached.

I took Bob to see a couple of the cars I was  looking at. He gets it. I no longer have to defend my choices and...... He has become a computer internet fiend (actually he always was) He spends hours looking for cars that fit our parameters and e-mails them to me, I review, reject and then make appts to go see the ones that make the cut. He comes with and we look at the car together. He feels and is part of the process and I am no longer justifying my decisions.  So stay tuned to see what we wind up with.

MSA Life - Bits and Pieces

Sorry I skipped posting in April but life had a way of absorbing time lately and now I find myself in May.

We had lots of "Stuff" happening. In April we traveled to my folks house for a family celebration of my Mom's birthday and Easter. Bob's 18yr old cat Spike became ill and passed away. Bob traveled with his scooter on the Bus. We had a freak snowstorm that caught my out of town sister unaware, and so on and so on.

Nothing seemingly major and yet these things affected us or had some sort of impact on our lives.

The Huge thing was the cat Spike. We have had two cats (litter mates) Marlin and Spike for 17.5 yrs. We are sailors so we named them after a nautical tool used to splice rope. Marlin tended to be

Surveying his domain

Spike's favorite place to be 

my kitty and Spike was Bob's pal. He followed Bob everywhere and was quite a character. As a child Bob never had many animals and so having one get really old, sick and then reach the end of his life was very hard on Bob. I have been fairly worried about how this would affect Bob. We become so attached to our furry friends and often they will reflect our own health, secretly I was hoping the cat would outlive Bob. towards the end of March Spike became ill, had several visits to the vet, the ER vet and a few overnight stays, over a period of three weeks we waited to see how he would do. He was doing okay thanks to the meds he had received, but he had lost a lot of weight and as the meds wore off he declined even more. During this period of time Bob also seemed to struggle, it was very hard for him to see Spike decline and he tended to project the cat's health onto how he was doing and so he also seemed to struggle with his health.

After Spike died, Bob and I had many talks about him. We talked about his adventurous life and how well he was loved and loved back. He was truly a great cat. Bob has actually done better now that the drama is over and while he really misses Spike he seems to be doing better now that the stress of watching him die is over. so I am glad to say Bob has overcome and is not having any serious decline in his health that I was so afraid of. We still have Marlin, who appears to be hale and hearty so the house doesn't have a large vaccum of furry fiends..oops friends.

I bring this up because we are dealing with this disease and besides the "Disease" related stuff we deal with we often are confronted with how everyday life enters into the equation. It just takes everything to a new level and we have to be aware of how it affects us and be wise in how we handle it. Be aware - we can't always assume that "normal" stuff is benign just because it's "normal".

As some of you know Bob got a brand new scooter in Jan and it has been a really wonderful addition to the tools we have to help Bob. It was especially helpful as Bob was able to get on it and get out of the house to help distract him the day Spiked passsed away. He was gone for about 5 hours, he did

check in so I was tracking where he was. I'm so glad he had that outlet so he didn't have to sit at home and brood.  He has become very adventrous with this scooter. Recently he had a meeting he wanted to attend but I had a schedule conflict with work and the time the meeting started. So he took the Bus!!!! Oh My Broccoli!  He found out that the buses would accomadate his scooter and the one that stopped on our corner would take him to within 3 blocks of the hotel where the meeting was being held. So he was bound and determined to go. I must say I was very nervous about this whole thing but had to buckup and support my husband in this. His independant spirit often challenges me and I am so glad! I did walk to the bus stop to observe the process and glad I did because this gave me comfort in knowing that the bus driver had a lot of involvement in getting him on and off the bus and  because of this would be in charge of making sure he got off at the right stop. I had been worried that he would miss his stop because of not being able to indicate his choice or he would get confused and not know when it was coming up.  Bob is a very smart man but this disease can make your thought process freeze, then complicated things can get really compicated.

He succcessfully made it to the meeting and I met him there later and brought him home YAY Bob!

Lastly we have been doing more traveling and have several trips planned this summer/fall. It went so well the last few times that I kind of got sloppy and as a result the trip to my folks didn't go as smoothly. I forgot some items that turned out to be very critical- not life threatening but it limited our ability to enjoy the get together because we had to struggle with certain issues. After talking to my mother-in-law about this she e-mailed me her travel packing list. She is a very organized traveler and she and bob's dad travel a lot. I appreciate her advice and help and have created a travel packing list modified for Bob's specific needs. I am also trying to have a prepacked back with things I can duplicate and have packed ahead so that it won't take me five hours to get us on the road and I won't be leaving critical things at home that can't be purchased or replaced easily.

Other tid bits - Bob had a fall in the bathroom in the middle of the night and a few days later had a very bad choking episode because he had aspirated saliva into his lungs. These are all very scary things and have pushed me to find out more about how to deal with these things. I have more research to do but I encourage all of our caregivers out there to learn basic first aid, to know how to evaluate for concussions, to help with issues that come up specific to your disease to know when to call for help and always err on the side of calling if you have any doubts. It always seems to happen in the small hours of the night and to have a plan of action helps keep the fear and stress at bay. i now I do better when I have knowledge and a clear plan on how to react and deal with things as they come.

So that was April. Hope you all have a very beautiful Spring.