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.

                

March - MSA Awareness month

Welcome to March which is MSA Awareness month. MSA is a form or disease related to Parkinson's Disease. Bob was initially diagnosed with PD but this was changed to MSA Feb 23, 2011 one year ago.

 Definition of MSA from the Mayo Clinic:

Multiple system atrophy (MSA) is a rare neurological disorder that impairs your body's involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion. Formerly called Shy-Drager syndrome, the condition shares many Parkinson's disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance. Multiple system atrophy is a degenerative disease. To see more regarding MSA follow the Mayo Clinic's link :

www.mayoclinic.com/health/shy-drager-syndrome/DS00989

So this means that March is "Bob" awareness month for me and this blog.

How does MSA affect us? What is his current condition? How are we coping? In sharing these things we hope to take advantage of "Awareness" month  to make you aware of MSa and Bob.

How it affected us?:

Since Bob was dx one year ago - Feb 23, 2011- We have had a major change in our jobs. Bob retired from his job as the manager of the mini-storage and I resigned from my job to take over his job. This allowed us to stay where we were living as he was a resident manager and now I can continue to work and still be a full time caregiver. this is the best of both worlds - I stay in the workforce and I am home with him full time.

What is his condition?:

I am fortunate that for the most part Bob is fairly easy to care for, however gradually as time has passed he has needed more and more help with daily life. Two years ago he could walk around the property, reheat food in the microwave, dress himself and get in and out of bed (although that was difficult). He was still able to manage his medications and only occasionally forget. He could still run the office, answer phones and open and close the gate each day. I could still work part time and go away for a weekend and he would be okay. He usually didn't travel with me because of the work schedule and travel was more difficult and uncomfortable for him. He was severely constipated and had developed some large hemorrhoids and so he tended to stay at home and not go out, visit friends, travel and go to church- He remained at home where he could sit in comfort and address his bathroom issues as he needed to.

MSA is a degenerative disease and in several ways he has lost ground and needed more and more help, but in other ways we were able to improve or learn how to cope with things in such a way that he has become more mobile and social. In the begining of last year we were able to deal with the constipation, it's still an issue but we have learned how to keep it at a controled level and know how to deal with it when it gets chronic. He also had surgery that dealt with the hemorrhoids and are now keeping them at bay. All through this disease we will encounter syptoms that while they will never be completely gone we can learn to minimize them or deal with the when they flare up. We have measures we can take to make our lives more liveable. For now.  Eventually they will over take us.  During the year - he had the surgery, we were given a mobility scooter, we learned about several incontenence products and installed a bidet that helps with his constipation. these items have made an amazing difference in his life.

So now this year he can travel, he goes to church with me on sundays (with his scooter), He gets out on the scooter as much as he can. We have lots of stores near us and he has "Shopped" Home Depot. Lowe's, Shopko, Harbor Frieght, Dollar store, URM, Michael's and many more. When the weather gets better he wants to try going to the VA on his scooter, I think I'll follow on my bike. Because he is able to travel now, I am taking him with me, last year we went to the Port Townsend Wooden Boat Show on the Washington coast and to his niece's wedding in Sedona, Az. We learned how to travel by car and plane with the scooter and with Bob's special needs and we had a great time.

As far as the daily stuff that I detailed at the begining. He can no longer walk any significant distance, while he can get around the apartment sometimes he needs a hand because he can be unstable.His posture is bent forward due to the disease, his muscles are rigid and painful and he has lost some of his motor skills and can longer wash his hands or bathe on his own. We experienced a fall in the bathroom one night because his foot will "Freeze" and not move even while his momentum wil continue to carry him forward. this can be hazaedous when he is sleepy and wobbly- so I will usually guide him to the bathroom. For the rest of the day, unless it's a bad day, he is fine. He no longer is able to get into the fridge and reheat his food in the microwave , I need to serve it to him and then take it from him when he is done. Some foods are harder than others to deal with, so adjustments have been made, foods avoided and different utensils are used. He rarely dresses himself anymore and needs help getting in and out of bed. We are installing bedrails and a trapeze that should help him be more independant in that regard. I now have to manage his pills and make sure that he takes them and has applesauce to help swallow if needed. His voice can be soft and he will often stutter but he can still talk my ear off.

How are we coping?:

His brain is still amazingly sharp and he is very very interested in EVERYTHING! He is a joy to be around and fun to travel with I'm so glad that we get to be together now and can enjoy this time together. Every morning after we have finished dressing we indulge ourselves in the daily HUG. this can last for a very long time. It is an essential daily ritual for us. Just husband and wife, Bob and Susan. We are taking advantage of his ability to travel right now and are planning several trips this year. We are making sure that he has all the safety tools he needs so he can go adventuring on his scooter this summer. He has a mapping GPS, multiple lights (including a strobe), a loud bell and a cell phone. Weekly he has had started attending church with me on sundays and wednesdays and recently joined. He is getting to know and be known by many people there and we are starting to socialize as a couple. Spiritually we talk about this disease and what it means to us and our future. He and I are both very willing to allow this circumstance in our lives to speak as a witness and testimony for God's goodness and blessing in our lives. Please read previous posts for specifics. We are wallowing in this togetherness and are secretly pleased to be able to be together so much even while we grieve the losses we have and will endure due to this disease.

So that is our current situation or the cliff notes. I hope that this has been informative to you about what we are dealing with and how and that you have become "Aware" of MSA and Bob this month. think of us often and send up a prayer for wisdom and strength.

Susan