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
Thursday, September 6, 2012
Friday, August 17, 2012
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!
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!
Friday, July 6, 2012
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
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.
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 :)
Friday, May 25, 2012
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.
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.
Thursday, May 10, 2012
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
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.
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.
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.
 |
| 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.
Friday, March 2, 2012
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
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
Tuesday, February 28, 2012
Recieving the Blessings
So the last few months have been quiet, after all the business of the holidays, it's been a nice change. We haven't been motivated to do much and haven't had enough snow to write home about until recently.
Bob has been trying to get out on his scooter every day that is sunny and warm - makes me think about this spring and how much he will be adventuring. We got him a street GPS and I think I'll get him a phone he can text with. It will make me feel better (hopefully) when he is out and about. He apparently thinks that he can go to a lot of places that may be just a little too far, not safe, or complicated to get to. This spring and summer should be interesting. Youv'e got to love his spirit!
Recently I wrote about Eucharisteo, being grateful before the blessing, and I am happy to report that we have recently recieved many blessings.
After visiting the Bob's GP and telling him all about the adventures and joy that the donated scooter had provided in Bob's life, the GP figured out how to get us a brand new scooter. Now Bob is all decked out and styling . the new scooter also breaks up into smaller parts and I can get it into the car much more easily. We passed the blessing on by donating the scooter to my mom who has difficulty walking long distances.
Because of his new found mobility he has been attending church with me every Sunday and Wed, even prodding me to go on Wed's when I might have stayed at home. Originally I was concerned that having him join me at church would simply extend my caregiving duties and I would loose that time of worship and respite that I had been enjoying. I was selfish and yet worship and respite are very important for me to be able to care for Bob. Yet I didn't want to prevent him from being able to worship (and get out of the house). I was conflicted. Well it all worked out. The men at the door have been amazing in learning about our routine, getting the scooter set up and guiding Bob into a place in the sanctuary. After the service we attend different classes (a men's and women's) The men make sure he gets there and gets settled with coffee and munchies. Afterwards he meets me out in the lobby. He wanders around while I visit and has his own visits. I LOVE it!! I get to have him with me in worship and I get to relax in my caregiving duties because others are always around to help. I didn't loose a thing and I gained more than I can imagine.
Two things have happened recently at church that have just floored me:
The Sunday before Valentine's Day the sermon was about marriage. It wasn't your typical mushy sermon on mariiage and I won't expand any further on it because the best part came at the end. We usually have a prayer and an altar call at the end of each sermon. We are encouraged to turn our lives over to God (if we haven't yet) or if we have been movedto do so, to bring anything to God there. That Sunday we were encouraged to come forward for a variety of reasons. Maybe we have had some issues in our marriage, or difficulties from life that affected it or we just wanted to bring our marriage forth to lift it up to God for his blessing and to honor each other.
Bob: "...go forward"
Susan :"Do you mean you want me to go up?"
Bob: "No I want us to go up"
Susan: "Okay, move your scooter and I'll follow"
Bob:" I want to walk"
So I get him out of the scooter and we start to walk forward, people are begining to return to thier seats and he stops.
Bob:" They are all leaving"
Susan:"That's okay they will wait for us"
And so we proceeded to go up to the altar where my husband took me to honor me as his wife and to seek God's blessings. There evidently was not a dry eye in the house. Pastor came off the platform and hugged us telling Bob how much he blessed him personally.Wow! All I can say is it was amazing to be a wife that has a husband who loves her, appreciates her and is willing to honor her before God and man. What an amazing moment, one I will treasure forever. I will be able to visit this memory when the times get rough, when he is gone, what a gift!
The second was that last week Bob attended the membership class and joined the church. I did two years ago and never thought that he would be able to do so also. But now on sunday morning I can check off "member" instead of "member" and "attender". It may seem to be a little thing but it helps to shore up the "Contented" column of my life.
As a caregiver I belong to a few caregiver sites and have heard or read many horrific stories of how this disease can affect relationships.This disease takes both a physical and emotional toll on the caregivers, it can destroy and warp the mental and emotional capacity of the patient. Paranoia, delusions and hostility can dominate the day to day life. Right now Bob and I do not have to battle these things and I hope we never do. I trust that the good Lord will help shield us from this. But this I know that if we do have even a little bit of a struggle or we encounter more than our fair share of it - He has given me this day to remember and to give me strength to know the truth that Bob loves, honors and appreciates me. this will comfort me and give me strength to honor him by taking care of him with love and joy.
So just as I gave thanks this fall for blessings I had yet to recieve I will rejoice in them now as I recieve them and continue to give thanks for blessing as yet not bestowed, knowing that God knows what I need and when I need them.
Bob has been trying to get out on his scooter every day that is sunny and warm - makes me think about this spring and how much he will be adventuring. We got him a street GPS and I think I'll get him a phone he can text with. It will make me feel better (hopefully) when he is out and about. He apparently thinks that he can go to a lot of places that may be just a little too far, not safe, or complicated to get to. This spring and summer should be interesting. Youv'e got to love his spirit!
Recently I wrote about Eucharisteo, being grateful before the blessing, and I am happy to report that we have recently recieved many blessings.
After visiting the Bob's GP and telling him all about the adventures and joy that the donated scooter had provided in Bob's life, the GP figured out how to get us a brand new scooter. Now Bob is all decked out and styling . the new scooter also breaks up into smaller parts and I can get it into the car much more easily. We passed the blessing on by donating the scooter to my mom who has difficulty walking long distances.
Because of his new found mobility he has been attending church with me every Sunday and Wed, even prodding me to go on Wed's when I might have stayed at home. Originally I was concerned that having him join me at church would simply extend my caregiving duties and I would loose that time of worship and respite that I had been enjoying. I was selfish and yet worship and respite are very important for me to be able to care for Bob. Yet I didn't want to prevent him from being able to worship (and get out of the house). I was conflicted. Well it all worked out. The men at the door have been amazing in learning about our routine, getting the scooter set up and guiding Bob into a place in the sanctuary. After the service we attend different classes (a men's and women's) The men make sure he gets there and gets settled with coffee and munchies. Afterwards he meets me out in the lobby. He wanders around while I visit and has his own visits. I LOVE it!! I get to have him with me in worship and I get to relax in my caregiving duties because others are always around to help. I didn't loose a thing and I gained more than I can imagine.
Two things have happened recently at church that have just floored me:
The Sunday before Valentine's Day the sermon was about marriage. It wasn't your typical mushy sermon on mariiage and I won't expand any further on it because the best part came at the end. We usually have a prayer and an altar call at the end of each sermon. We are encouraged to turn our lives over to God (if we haven't yet) or if we have been movedto do so, to bring anything to God there. That Sunday we were encouraged to come forward for a variety of reasons. Maybe we have had some issues in our marriage, or difficulties from life that affected it or we just wanted to bring our marriage forth to lift it up to God for his blessing and to honor each other.
Bob: "...go forward"
Susan :"Do you mean you want me to go up?"
Bob: "No I want us to go up"
Susan: "Okay, move your scooter and I'll follow"
Bob:" I want to walk"
So I get him out of the scooter and we start to walk forward, people are begining to return to thier seats and he stops.
Bob:" They are all leaving"
Susan:"That's okay they will wait for us"
And so we proceeded to go up to the altar where my husband took me to honor me as his wife and to seek God's blessings. There evidently was not a dry eye in the house. Pastor came off the platform and hugged us telling Bob how much he blessed him personally.Wow! All I can say is it was amazing to be a wife that has a husband who loves her, appreciates her and is willing to honor her before God and man. What an amazing moment, one I will treasure forever. I will be able to visit this memory when the times get rough, when he is gone, what a gift!
The second was that last week Bob attended the membership class and joined the church. I did two years ago and never thought that he would be able to do so also. But now on sunday morning I can check off "member" instead of "member" and "attender". It may seem to be a little thing but it helps to shore up the "Contented" column of my life.
As a caregiver I belong to a few caregiver sites and have heard or read many horrific stories of how this disease can affect relationships.This disease takes both a physical and emotional toll on the caregivers, it can destroy and warp the mental and emotional capacity of the patient. Paranoia, delusions and hostility can dominate the day to day life. Right now Bob and I do not have to battle these things and I hope we never do. I trust that the good Lord will help shield us from this. But this I know that if we do have even a little bit of a struggle or we encounter more than our fair share of it - He has given me this day to remember and to give me strength to know the truth that Bob loves, honors and appreciates me. this will comfort me and give me strength to honor him by taking care of him with love and joy.
So just as I gave thanks this fall for blessings I had yet to recieve I will rejoice in them now as I recieve them and continue to give thanks for blessing as yet not bestowed, knowing that God knows what I need and when I need them.
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