2011 MSCaregiverDonna

Hey Sweetie! Can you Come Here a Second?

Posted on July 26, 2011 by mscaregiverdonna

I yell back, “Just a minute.  Let me finish this sentence.”  Then I try to recollect my thoughts and finish up whatever thought I was in the middle of (I work at my job from home using an internet connection) and see what he needs.  Often it’s something simple like “scratch my leg” or “hand me the remote.”  Other times it’s more time-consuming, “I need to go to bed.” or “It’s time to cath me.”  Most of the time, the one thing turns into two or three and it’ 5 minutes or longer (often longer) before I get back to that sentence.  Seven out of ten times, before I get settled, I’m called back for something he forgot.

How many times a day does your MS patient call you for help?  If I have slept the night before I tolerate it pretty well.  If I haven’t, then I do a lot of mumbling when I get the “call.”  I admit I get frustrated a lot. I have to remind him often that I’m at work and need to get back to my desk.  The interruptions cause me to regularly work till after 9 pm trying to get in a full day.  I’m very fortunate that I have that flexibility.  I’m sure many of you do not.  My heart goes out to you because it’s a terrible conflict to have to decide which need to serve–caring for your spouse or bringing in the money to care for you both.  The reality is you have to work to eat, but it’s hard to manage it all. 

How do you afford it? You can’t afford to work, but I expect you have to pay someone to stay with your patient. That can’t be cheap.  I know one day I’ll have to go back to my office at work and be there instead of here. I dread that day because I know he will have a difficult time adjusting to being taken somewhere to stay all day (if there is such a place that provides that level of daycare) or having someone unknown come here to visit. I find myself thinking about that at times and have to turn it off and say a prayer of thanksgiving that I’m still working from home.

Being here, though, is both a blessing and a curse.  Sometimes I think if I hear, “Hey Sweetie” one more time I’m burst out crying in frustration.  I’ve done that a couple of times.  He understands that sometimes it’s just too much and I need to get away to go to the store but even when I do that, and I can’t hear, “Hey Sweetie,” I often get a call on my cell to ask when I’m coming back because he needs….

So to all, you caregivers out there who are on 24/7, here’s to you and your Sweetie.  Hang in there.  Take a deep breath, try to remember to think about how it must be to need so much attention and go back in one more time.

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Fear of the Future

Originally posted at MSCaregiverDonna July 24, 2011

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

We’re going on vacation.  I so want him to have fun and enjoy it but I’m afraid he won’t. I’m afraid he will feel bad and not be able to go fishing and not want to participate and be absolutely miserable. He will try not to put a damper on it for anyone but I’ll know and I’ll stay close by and I’ll just want to be home rather than there. That’s my fear for vacation.

We’re looking at building a new home.  I want to be excited and make plans but my fears are there in the back of my mind.  Will I be able to continue to work full-time so that I can pay the bills. The house we live in now needs so many repairs to be able to be put on the market.  How can I pay for that and a new house too?  Right now I’m working from home full-time.  What if my job needs me to be on site and I can’t work from home anymore?  Who will take care of Lynn?  He cannot be alone for more than an hour by himself.  His son is starting a new full-time job. Both my kids work full-time.  He’s a big guy and needs a lot of help so not just anyone can stay with him.  So what would that mean?  A full-time licensed caregiver while I’m at work?  Insurance isn’t going to cover all that.  I won’t be able to afford a caregiver and paying to get a house built.  See where my mind goes?

Sometimes it gets very overwhelming when I think of all the responsibility and how dependent he has become on me. I miss having the freedom to sleep a full night without having to get up to catheterize him or put him on his peddler because his leg is spasming.  I miss being able to go to a store and shop.  I have four gift certificates for a massage but I can’t be gone for the two-three hours I would have to be a way to be able to use the certificates (and my muscle spasms in my back from lifting him by myself are constantly painful so I could really use the massage).

So what do I do when my mind starts going in those directions? I tell God it’s His.  I can’t handle it and I’ll just have to trust He will take care of it when the time comes.  Otherwise, I would just go mad.  But that works and I keep being able to cope and keep having hope.  Thank goodness for faith in the fact that He will help me when the time comes. He always has.

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Could MS Be a Blessing?

Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

Posted on mscaregiverdonna on July 17, 2011 

First off let me say that I would not wish MS on anyone.  Nor do I believe that God gives people MS either as a blessing or a curse; MS, like all diseases, is a consequence of a fallen world and Adam and Eve’s free choice to disobey God.  That said, I believe God can use the hard times in our lives to strengthen and bless us.

I must admit that I don’t particularly appreciate it when someone tells me that “God doesn’t give us anything we can’t handle.”  Most of the time, I want to respond that His idea of what I can handle and mine are world’s apart, but I have to admit that for the most part, that saying is true.  Or maybe it’s not.  What I have found is that God doesn’t expect me to handle it alone. 

I’m someone who wants to be in total control of my life.  I don’t like the unexpected.  I plan everything.  I do not leave things to the last minute just in case something might come up.  I like to know what’s happening and I want to have closure.  One of the hardest things for me to learn as my caregiving requirements have increased is how to handle not being in control.  I’ve had to learn to trust God.  I’ve had to learn that I cannot do everything myself.  I have to acknowledge that I am not superwoman, and I need help.  It’s through all that I’ve had to learn that I have realized my greatest blessings.

When Lynn and I got married, we both loved the churches we belonged to before marriage, so we decided rather than either of us give up our church home, we would find another one.  We looked around but felt the most at home at Gethsemane Church of Christ in Mechanicsville.  We both liked to sing, and I wanted to act.  Lynn was a very talented tenor, and I was a passable alto, so we joined the choir.  Through that, we became part of the cast annually for a Christmas dinner theater. We also joined the handbell choir, and Lynn became the drummer for the church praise band.  I helped with the start-up of a support group called Discover Freedom (the group was initially started to support people with addictions but was soon found to help people with all types of needs).  I also helped create a drama team and helped both write and present many of the scripts. We were at church 4 out of seven days and loved it.  We made so many friends and received so many blessings from participation. 

Then Lynn started getting weaker.  First, he had to drop out of the choir.  His fatigue was too much to allow him to sing or to stand and perform.  Then he had trouble holding the drum sticks plus his legs got too stiff to drive safely, so he had to drop out of both the worship band and bells.  I continued participating for a while until one day he fell while I was not at home and had to lie on the floor for three hours before I could get back to help him up.  The trauma of that experience and the fact he became very overheated and dehydrated lying next to the heat register caused him to become very weak.  I ended up having to work more from home.  He had to stop going to church and eventually so did I so I could stay home to help him.  We missed the fellowship from church and the opportunity to worship with our church family.  

When we stopped going, it would have been easy for the church to forget us, but they didn’t. We get cards and phone calls all the time.  The entire choir came last Christmas to sing Christmas carols.  The church collected money, and one of the members built a beautiful wheelchair ramp for us.  Between Thanksgiving and Christmas, Lynn was continuously in the hospital.  A group came over to our house and decorated both inside and out so we would come home to Christmas cheer.  While at our house they saw our refrigerator was almost worn out and they brought in a second-hand one that was in much better condition than ours. A few months later, they collected money to put in a handicap shower, and two of the members installed it.  Another group came by in the spring and helped remove several broken down things in our yard. One of the members is cooking our meals, and several are donating money to her to do so.  Someone else is baking us bread every week, and another one is helping Lynn with reviewing the books he is writing.  The blessings of this group are overwhelming!  We are so taken care of and so loved that even though we are not able to do as much as we used to, all we have to do is mention something to someone and the next thing we know, it’s done.

Then there is also the blessings of my job.  My supervisor is a wonderful caring woman who has supported my need to work from home.  She has approved me to have computer equipment set up so that I can work whatever hours I can so I can care for Lynn and still meet the demands of my job.  My team is fantastic as well–doing whatever I need to help me get information and keep up with things at work. My coworkers often offer their support and encouragement, and they’ve been known to send me extra help like getting carpets shampooed and delivering meals.

Our children are always doing things for us and helping us out. Our parents and siblings do the same.  So as you can see, we have had a blessing upon blessing.  Though God hasn’t chosen to remove Lynn’s MS, He has given us so much instead, and when I can’t do things myself, He sends someone along to help me/us out.   

I hope you have a church home.  If not, I encourage you to find a church like ours–one that lives their faith and puts into practice what Jesus taught to love your neighbors as yourself.  God’s blessing can be more than you ever imagined.

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What a day!

I have had a terrible day, and it’s all due to having to get a new modem to my computer.  I truly believe computers can either be your best friend or your worst nightmare, and since about Wednesday; I’ve had it up to my eyeballs in frustration with them.

First, on Tuesday, I lost the internet.  I HAVE to have the internet because that’s how I connect to work.  I called tech support and spent over an hour, trying to figure out what was wrong.  They decided it was my modem and said they would have to send me one.  I was really upset.  If I can’t work from home, I have to go to work.  Who was going to stay with Lynn if I went in?  If I didn’t go in, I had to take a vacation day.  Who wants to take a vacation because their internet is down? 

I was on the verge of tears.  Lynn insisted he would be fine and I had to leave him home alone.  I didn’t want to but what other choice did I have?  I started getting him ready, getting the items he would need within reach, tidied myself up to go in (I don’t exactly dress professionally at home), and got ready to leave.  Fortunately, before I got to the main highway, Lynn called to say the internet was back up.  I was so relieved! I turned around and came home (so much for the tech support diagnosis).

Late Wednesday the modem came in by UPS.  Supposedly it’s faster than what I had so this morning I hooked it up.  I’ve been working on the x!@#$%^ thing all day!  First getting my computer set up took well over an hour because the activation process wasn’t working for me. I finally got that settled.  I then had internet, but Lynn’s computer didn’t.  Tonight I spent 2 hours on the phone with a guy from India (who was incredibly nice), but Lynn’s computer still doesn’t have an internet connection.  It’s connected to my modem, but the internet won’t come up. What’s with that?  I finally had to get off the phone. I have now hooked up a laptop for him to use, but it’s got such a small keyboard and monitor I don’t know that he can use it at all.

I share all this because of the effect it had on us.  I was so frustrated all day–torn between wanting to help him (so he could work on his book marketing and play music from YouTube), and I need to work or do things around the house.  He knew how upset I was, and that directly made him feel like a burden.  He had had a good day today.  He was able to do things in physical therapy and later, when he was exercising that he hasn’t been able to do in a while.  He was so excited, and all I could do was focus on the !@#$%^ computer.  My behavior stole his joy.  He was feeling so bad about being a burden to me that he was nearly in tears this afternoon. Then he recognized it was just Satan trying to steal his joy and undermine his progress so he would give up. Which also showed me that Satan was doing the same thing to me, so instead of seeing Lynn’s growth, I would focus on the difficulties.  What a shame. 

I wish I could say I’ve learned my lesson, but I know myself too well.  I can easily get overwhelmed and start to feel sorry for myself, and then I take it out on Lynn, letting him know how frustrated I am that he cannot do more and accusing him of not trying hard enough. He truly tries but with fatigue and spasms, and just plain ole MS complications, he can only do so much.

Lord, please forgive me of my attitude and self-pity and help me to appreciate the improvements and the successes.  And Lord, please give me an extra measure of peace in my spirit so that the frustrations of trying to work on his computer tomorrow won’t result in the same thing.  Amen.

What a day! Read More »

My back hurts…

Caregivers are at great risk for back injuries due to not using proper body mechanics in moving family members correctly.

Actually, it’s my side.  I tried a patient lift, but it didn’t work with Lynn’s wheelchair.  I know the one that I would like to get–it’s a modified version of what we used in the hospital–but it’s over $3000 because it’s not provided by our insurance company.  So I lift Lynn myself.  He now weighs 215 lbs.  That’s a lot to lift.  I’m no small person either. I weigh about 180 lbs, which is probably part of the problem.  If I were in shape and lost about 50 lbs., I would have more energy and more flexibility, however; as my doctor explained, losing weight is difficult when you’re under a lot of stress.  My body thinks it needs to store fat so that I’ll have the necessary energy to fight off what’s causing the stress.

I also admit I have no will power right now.  To think about counting calories or watching portions is just more than I can face.  I eat to keep up the energy, and I grab what’s easy.  I try to keep sweets out of the house, but I snack on nuts and bars and whatever I can find that I can eat while I work. I’ve looked at weight loss ads, but I’m afraid of that plus I have a lot of sensitivities to foods of it’s just too much to think about right now.

I know I also need to exercise.  I sometimes get in a few  minutes of stretching to help my muscle spasms but to even carve out 30 minutes means either reducing sleep time or work time and if I reduce work time, I have to take vacation time and I need to store that up in case he gets sick and goes into the hospital again. What a roller coaster!

I worry though about these spasms I’m having so often from lifting.  I know one day I’ll probably pull something that won’t go back and then what will we do?  I’ll have no one to take care of either of us. Then what?  I have long-term care insurance to cover me, but Lynn already had MS when I had the opportunity to get it, so he wasn’t qualified.  Just one more thing to leave in God’s hands because I can’t worry about it right now.

For now, it’s 11:00 p.m.  I finished working at 10:30 and put a pre-made meal from a friend in the oven for dinner.  Thank the good Lord (and Amelia) for those meals.  I don’t know what I would do without them.  I’ve had some Advil and Lynn’s in his powerchair attached to his peddler for the night. Think I’ll go have something to eat…

My back hurts… Read More »

Shower Day

Bathroom fixtures for mobility impairments.

For most people, a shower is just a routine part of their day.  It takes no more preparation than making sure you have shampoo and soap and clothes to put on afterward.  Not so, if the person who needs a shower is in a wheelchair and cannot help themselves.

When I first started bathing Lynn, I had a shower seat I put in the tube.  I lifted him onto the bench, shifted his legs over the edge of the container, and used a hand-held spray for bathing him.  Reaching over the side of the tub was difficult, and we were both soaked by the end of the bath.   My back also was usually aching by then too. We choose this method because it was the only room I could get a wheelchair into since bathroom doors are more narrow than other entries.  (why is that by the way?)

Then our church got us a shower into which we could roll a wheelchair.  That was wonderful.  I lifted him from the transport wheelchair onto the shower seat.  It allowed me to be in the shower with him and not get wet but have plenty of room to bathe him.  The only issue was lifting him back into the wheelchair while he was soaked.  Lifting him while soaked didn’t feel very safe, and a few times, I wasn’t sure I would make it from the shower seat to getting him back safely into the wheelchair due to slippery surfaces.

Then we hit upon the perfect answer…a shower wheelchair!  Now we have the best of both worlds.  I can roll him into the shower, stay relatively dry while I bathe him and I don’t have to lift him while he’s wet.

But still, shower day is a big job.  It takes a lot of preparation time to get everything ready, then time for the bathing and drying and dressing.  I always wait until after I bathe him to take my bath because I get pretty sweaty from working in the hot shower, but this is SO much better than what we had before.

One word of caution, though.  Today I was going to save time by coloring my hair while I also bathed him.  I put the color on and put a shower cap over it.  You’re only supposed to have the color on for about 30 minutes.  We had some unexpected events with the shower today, and an hour later, I still had not washed out the color!  Nothing happened. I still have my hair, and the color’s okay so no big deal but trying to combine the two might not be such a good idea in case you’re ever considering doing the same thing!

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Switching Gears

Medicaid eligibility is based on income and asset levels rather than age.

One of the challenges I face as a caregiver is switching gears in mid-thought.  Of course, being a mother certainly helped prepare me for that duty but I always switch reluctantly.  I’m the type of person who likes closure.  I like to start a project, focus on it, get it done.  Not being able to finish something frustrates me considerably.  Needless to say, I’m frustrated a lot.

I work from home as I’ve mentioned many times before.  After I get Lynn and myself ready for the day, I “go to work” at my computer.  I have a job that takes a lot of concentration so when I’m working on a document or trying to advise someone over the phone, it’s difficult when my concentration is broken.  I’ve become pretty good at continuing a conversation on the phone while I insert a catheter, put him to bed, feed him, dress him, etc. but I’m not so good at trying to listen to what he’s saying at the same time I’m trying to listen to a person on the phone.  I know from my training that the human mind can only think one thought at a time so when he’s asking me one thing and the person on the phone is asking something else, one of those thoughts has to be repeated.  It’s usually his but there is always an internal debate on which conversation should I consider first.

Then there’s the frequent, “can you come here for just a minute?” which is never just a minute.  Like last night I was working on a document and he needed me for “just a minute.”  It was 45 minutes later when I got back.  By then I had to totally re-read everything I had just written and get back into the topic.  Of course, 15 or 20 minutes later (sometimes sooner), he’s back with something he forgot he needs…and I start over again.  I do eventually get it done but I admit, I sometimes get pretty short with him.

Tonight I was working on something and he decided to nap. He got up two hours later and was a little miffed that I had let him sleep so long.  I told him I thought he must have needed the sleep since he didn’t wake up.  He countered with, “you just wanted me out of your hair for a while.”  He was right. It’s just so nice not to get interrupted.

I thought when my kids grew up, that interrupting thing would be over for the most part.  I realized recently that I’ll now have the type of life I had raising kids for a very long time to come (if we’re both lucky enough to live a long time.)  It’s not what I expected for our future but that’s okay.  There are still the naps that come fairly often and maybe one day soon he’ll be strong enough that he won’t need me as much.  Somehow, I expect I may miss being needed when that happens…at least some…but I think I could get used to it.

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Things are improving…

I try to be thankful for any positive changes.  Sometimes I almost forget that but I try to remember each night when I say my prayers, to say, “thank you,” for all the good things that happened that day, even if the good thing is that nothing bad happened.

Although Lynn has not been feeling well since this week’s full moon made him feel all achy, we’ve been seeing improvements.

First off, he’s been getting hot and hasn’t had to wear extra layers as much.  We suspected the iron he was taking was helping him and sure enough, we got his lab work back this week.  His hemoglobin had risen from 8 to 12 in just one month!  That’s awesome!  He’s still low but low normal now.  His iron levels are still too low (he’s 33 and normal is 30-400) but he’s now at least in the range.  He’s been so bone-chilling cold for months now that this is great.  The other good point about this is that if he get’s his hemoglobin stabilized, they might do another treatment of plasmapheresis to see if he can get even more improvement.  That wouldn’t be till November or December but that’s a good possibility.

Second, he saw his pulmonologist and got a good report.  We were a little worried because he’s not using his Hayek as much because he now sits up all night to sleep (my third good

change).  Remember, I wasn’t getting any sleep at night?  Well he now sits up in his wheelchair all night attached to his peddler exerciser so that if he gets stiff, he just starts the peddler going again. He’s also careful not to drink very much just before bedtime. That means that now I only get up once a night to cath him!  Which means I sometimes get up to four hours of sleep in a row!  I’m a much happier camper.  Anyway, since he doesn’t lie down, he can’t use the Hayek so we were a bit concerned about what that might mean for his lungs.  His doctor said that as long as he’s sitting up, gravity doesn’t affect his diaphragm so it’s easier for the lungs to expand anyway.  Also, he’s not bothered by sleep apnea when he sits up probably because his tongue doesn’t fall to the back of his throat.  So that’s all good.

He has also started promoting his book through book clubs and has gotten some who want to review it in their club.  He’s sending out letters himself and researching places to contact.  Previously he has always had to do that with either myself helping him or one of our friends.  He’s sent out about 65 emails and so far gotten five positive responses which statistically is very good. The positive responses have been good for his morale and the typing has been good exercise for his fingers.

So we’ve had much to be thankful for this past week or so.  We still have our challenges.  Ragweed is out and making him stuffy and congested.  That’s no fun.  He can’t find the motor he wants for the leg lifting device he wants to make so he can sleep in the bed at night.  My son called to say he might have to move back home because his girlfriend’s family might be evicted in October (they are two months late in their house payment and have already gotten an eviction notice…how cruel).  He stays there so if they lose the house, he will come home till they all find a place to move into later.  Our lawn tractor is broken so we can’t mow but that’s no biggie…it’s mainly the back yard that grows anyway.  The arthritis in my thumb joints and wrists have been really bothering me a lot.
So even though we have new and ongoing challenges we face every day, we have much more to feel blessed about than we had last month– so we’re to the good.  I hope you are as well.

Things are improving… Read More »

9/11 Remembered

"Emergency Preparedness" helps you to be ready in the event of a disaster.
Aerial view of the debris field of the North T...
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Who doesn’t remember where they were and what they were doing on Sept. 11, 2001? I’m sure every one of adult years who still has the capability to remember the past can tell you a story about how that day affected their lives forever.

Watching the programs today, several thoughts came to mind.

1.  So much has changed – both in America and in our home.  Ten years ago, all three children were still dependent on us.  Now they are on their own and come help us out.  Lynn was working full-time and MS was yet to invade our lives.

However, like a terrorist cell planning, waiting, and taking action, MS was already there doing its damage.  Where in 2001 Lynn was so active he hardly had time to rest; now, any significant activity means he needs a lot of rest.  Where Lynn could fight off a cold, heal quickly from an injury, and go to work in excessive heat or cold; now, any of those things kicks his butt and puts him in a tenuous position requiring all his resources to overcome them.  However, just like America learned to adapt, so did we.

2.  What happens to the infirmed in an emergency? Watching all those people running as the towers fell…thinking about all the others who walked down flight after flight of steps, I wonder, how many were left behind who couldn’t get away on their own steam?  How many used wheelchairs or walkers or rollators or just didn’t have the stamina necessary to evacuate?  They were doomed from the first spark.  Though some may have tried to help and may have sacrificed their own lives to help, the reality is that if you are impaired physically or mentally, for that matter, your hopes of survival in an emergency of mass proportions is significantly less.   I think about that whenever I leave Lynn alone at home to go to the store or run an errand.  I never leave him more than an hour and rarely go more than a few miles away, but I always make sure he’s in his chair before I go. If he were in bed, he could not get himself up and whatever was happening would occur without his being able to get out.  He has an alarm he wears to call for help but realistically, we live in a county with a volunteer rescue or fire department… he would die before a fire truck could get here.
3.  We are truly blessed.  So many watched those towers collapse either on TV or from a few blocks away.  They had loved ones, friends, others they cared about in those buildings and though they hoped, most feared that their loved ones were gone.   They watched the crush of tons of rubble fall on those left behind, saw the flames that caused those filled with hopelessness to jump and they wondered, “was that my spouse/child/ parent/sibling/friend?”  We have MS but we have life and we have hope.  And as long as we have life, we can still love and be loved and have plans and have hope for cures and better tomorrows.   That’s more than can be said for anyone in the planes, those left inside the towers or who were around them when they fell, and those in that section of the Pentagon that also went down.
4.  Through adversity we are stronger.
 I hope that’s true for America.  I know that’s true for use.

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Can he not remember or is he just not paying attention?

Lynn has the most awesome memory of anyone I’ve ever known.  He is the one you always want on your team for any trivia game.  He remembers every little detail about any movie he has ever watched, can tell you what year and the date something happened, and if you think you’re right and he’s wrong about something that happened… give it up, he’s always right.

For those of you who might not be familiar with MS medical assessments, one of the tests they have you take is a memory test.  It’s horrible, and when I listen in, I always give up after about the third set of numbers.  There’s a man’s voice that calls out numbers and what you have to do is add the first two numbers and get a total, then he calls out another number which you add to the second number; not the total; to come up with a new total…see below…(totals are in () with the numbers being called out between the pluses)
1 + 5 (6)  + 3 (8) +7 (10) +5 (12) etc.

It’s effortless to add the last number called out to the total, or if you are like me, you get behind counting the totals on your fingers.  The test has 60 numbers to add that way.  Lynn would usually miss only 1 or 2 and many times would get them perfect.  He was amazing, but that is changing.  The last few times he hasn’t done very well. He says he hasn’t felt like trying, or he just isn’t as motivated to do his best, but I wonder if maybe he’s having more trouble remembering.

I’ve noticed that now I tell him something, he asks about the same thing a short while later.  He recalls it if I make him think about what he asked or remind him of something, but it takes a while.  I can no longer ask him to remember to tell someone something for me or to remind me because he may or may not think about it at all.

I sure hope it’s just his feeling bad after all those hospitalizations and his anemia or maybe just the lack of brain stimulation.  He still seems to have excellent long-term memory, yet a whiz at trivia, but he’s getting more and more forgetful.  I know that if you don’t have a lot to stimulate you, your brain gets lazy so I’m pushing him to work more on his books, and he’s doing some AutoCAD drawings, so that is good for him.  I hate to think that he might be losing some of his memory, along with his mobility.  That’s scary.  I guess only time will tell, but for now, I’m going to believe it’s just selective memory.  That feels better.

Can he not remember or is he just not paying attention? Read More »

I so want a wheelchair van!

When we went on vacation, I rented a wheelchair van thanks to the generous gift of one of our church members.  IT WAS AWESOME!  I was so spoiled by that van.

Lynn and I have a 2002 Impala.  When we go somewhere, I bodily list my 190 lbs husband from his wheelchair and set him into the car seat.  He cannot help very much with this process and what makes matters worse is that the way the passenger door opens, I have to swing his hind parts in toward me and then back into the seat.  Some days I barely have the energy to do that without dropping him–especially when he’s wiped out at the end of a long doctor’s appointment or isn’t feeling well.  Ever tried to lift and move 190 lbs of dead weight?  Let me tell you, it ain’t pretty.  Sometimes it takes me several attempts.  I almost get him on the seat and then feel myself slipping.  Many a time I have prayed to be able to move him without either of us getting hurt; and thankfully those prayers have been answered…so far.

For example, today, I took him to the doctor and was having trouble getting him out of the car at the office.  A kind visitor helped me, but she almost caused me to fall as I was swinging him out because I wasn’t expecting the load to be that much lighter.  Fortunately, I was able to stabilize my footing quick enough to sit him down in the portable wheelchair.  Then when I was putting him back in the car after the appointment, my foot slipped on a leaf.  Again I was lucky.  At home it was pouring rain as I got him out of the car, trying to keep his wheelchair dry and get him settled.  Needless to say, I got drenched, but we got inside without any mishaps.   Answered prayers!!

The fact that it’s so difficult to get Lynn into and out of a car has pretty much made us restricted to home except for doctor’s appointments.  We don’t go ANYWHERE.  We keep hoping his strength will improve enough that he can help with the transfers but it takes a long time to get your strength back after being in the hospital and he’s been in four times this past year!  I hear it takes a week to recover for every day in the hospital so it may be awhile…

But that wheelchair van….ahhh…he just drove himself right into it.  He could stay in his own comfortable power chair and just drive right in and right out without any problem.  Not only that!  when his leg started to spasm, I just pulled over and hooked up the peddler and kept him from being so miserable while we traveled.

When the Impala finally stops working, I’ll look for a van for my next vehicle.  Though I really want one now, I just can’t see taking on a large car payment when currently I don’t have any and our bills are already eating up most of our income.  I need to pay off a bit more debt and then….maybe, just maybe, I can find a good used handicap van that would suit our needs.  I worry about a used one because you just never know what you’re getting but …..we’ll see….

In the meantime, keep your fingers crossed that I don’t drop him on any of our doctor’s appointments.  I have one more this week so here’s praying all goes well.

I so want a wheelchair van! Read More »

What a week….

Things are pretty much back to normal following Hurricane Irene.  I understand that there is another possible hurricane heading toward the Carolinas so we may have more to come.
We got our power back at midnight, Wednesday morning.  We were very fortunate because my son didn’t get his till the next day and one of our friends didn’t get hers till the day following that!
When the power came on, I actually shouted for joy…then I immediately started cleaning… the bathrooms, the dishes, …it was 3:00 a.m. before I went to bed.  The next day it was a shower for Lynn, then me, then more clothes to wash.  I think I finally felt like we were back to normal around Friday (though it still looks pretty trashy outside).
This weekend, as I surveyed the land right around our house, we had three large trees go down.  We were very fortunate not to have anything hit the house. That is especially true since we have a number of large trees in our front yard that could cause quite a bit of damage if they went down.  If that happened, we might just be building a new home sooner than later.  Glad we aren’t being faced with that crisis.

What a week…. Read More »

Weathering the storm

Hurricane Irene has moved on now and we fared pretty well.  We lost electricity at 2 pm on Saturday and we still don’t have it back here at 5:30 p.m. p.m. on Sunday.  Our yard is a mess and we’ve lost everything in our refrigerator but I think the freezer food for the most part is okay.  We have a generator running a small air conditioning unit and a friend brought us another one for the freezer which also allowed me to hook up a TV and the computer.

Lynn is feeling really bad though.  Low pressure systems really hurt him.  He feels like he’s been run over by a truck.  He’s also emotionally hurting.  He’s been on the verge of tears all day because I’m having to do everything to recover from the hurricane.  He’s so frustrated because he can’t help or do it himself.  It has been difficult trying to help him and manage everything in the aftermath plus, I couldn’t sleep much last night.

It’s hard seeing him so upset over his loss of ability to help out. It hurts as a man to have your wife do everything for you and then also handle emergencies as well.  He feels so worthless at times and that’s so hard to see and so hard to help him overcome because the reality is, he can’t do those things anymore and he is limited on how he can help.  I try to help him keep his “manhood” by letting him help as much as possible but I often get frustrated because I just don’t know what I’m doing and it’s not easy for him to explain it to me at times.  I’m pretty dense with mechanical things although I do eventually “get it.”

The power company has us on priority but who knows when we will be fixed since there are probably hundreds also on priority with medical problems.  My daughter has come over to get the gas can to get more fuel for use tonight. Sure hope nothing in the freezer has gone bad since we plan to eat that!

If anyone’s looking for something to do, I know a yard that needs to be cleaned up!

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I have the blues today

I don’t know why.  But I’m feeling blue. Maybe the atmospheric pressure is playing a role since we are waiting for  the hurricane to roll in tomorrow night.  I think it’s primarily due to lack of sleep and trying to get away today.

I worked till 10 last night and then Lynn wanted to lie down for a nap.  I put him to bed and had so much I needed to do that I let him sleep from 10:30 till 12:30.  I know that was a mistake and I knew it when I was doing it but I needed some uninterrupted time to finish what I was working on.  (Plus we spilled some urine on his seat cushion and I wanted to get his favorite socks, leg warmers and the seat cushion clean for him before he got up)….so I let him sleep.

Of course he didn’t feel like eating right away when he woke up so I worked on downloading my contact list on my phone so I could transfer the information to my new phone. As usual I ordered what I needed over the internet so I was reading instructions so I could “do it myself.” I got him feed and into bed by 2:45 a.m.   I set my alarm for 9:00 a.m. because I was supposed to have a conference call regarding an issue at work.  At 4:00 a.m. he needed to be cathed.  I got up and did my thing, (while he slept) and was just about to settle back into bed when he decided he was too stiff to sleep and wanted to get up–so I got him up and got to bed around 5:00 a.m. He peddled till 7:00 a.m. and wanted to come to bed.  I was so tired.  I pulled up my work email and a message that I needed to reschedule the 9 a.m. meeting.  I went back to bed.  He got up at 9:00 a.m .  I went back to bed after getting him dressed and settled and fell right back to sleep.  My alarm went off again at 11.

I had a 2:00 doctor’s appointment for myself.  It was for a physical but also to talk about my painful hands and hip joints and the fact that my feet are numb all the time now. I showered, got breakfast, got Lynn dressed, got his meds ready, we ate, I took him to the bathroom, checked my emails, got my stuff for the appointment, put a foley in him for the day since his son was going to stay with him, got a message his son was going to be late but to go ahead and go….In the middle of this, I had several “special” requests, help with his email, help with the window AC, measure something for the device he wants to have built to help him keep his legs moving while in bed.  Each interruption just caused me to become more tense.  I finally, in frustration, told him he couldn’t ask me for one more thing, I was going to be late. He then said, “that’s why I asked you if getting up at 11 would give you enough time.”  To which I responded, “but you also told me you didn’t want me to go if I was going to fall asleep driving so I was trying to get at least 6 1/2 or seven hours when all the naps were totaled.”  He agreed that was more important.  I finally ran out of the house to go to my appointment.

I made it right at 2. I have a 45 minute drive.  I got so sleepy driving and was so tired.  I listened to a book as I drove which helped but I was really more like a zombie.  I read while I waited for my appt.. and was seen. My doctor told me I really needed to find a way to get some sleep or it was really going to take a toll on my health.  She admitted she knew that would be a challenge.  She also told me until I could get some rest, I probably wouldn’t be very successful trying to lose weight because the stress was causing my body to hold on to “stores” to fight the stress.
I think that’s part of why I’m blue.  I want to see if we can get someone to be here at night so I can sleep more than two hours at a time but Lynn is so against it.  He doesn’t want anyone but me to do anything for him.  He promises to find a solution; create a device to help him stay in bed.  He assures me he is getting better and it won’t be an issue soon.  I so want that to be true but I admit, I don’t believe he will get so much better, with or without the device he’s making, that I will be able to sleep.

I asked him if while I was gone he could have Eric get the deck ready for the hurricane and to go to the gas station to fill up the gas can for the generator.  When I got home, nothing had been done.  He had not asked Eric to do any of it, including he hadn’t had lunch and nothing was put away from the things he had done while I was gone. In his defense, he just didn’t think of it but it made me sad. I wish he would think about me a little more and do things to make my life a little easier too.  I know he’s the disabled one and his burden is so much worse than mine. He is so appreciative of what I do and he tries to keep a positive attitude, but…I’m tired, and I’m sad, and I just want to be able to go to the store without rushing to get back home, and I want to not do anything of importance or any chores for a while.  Oh, well.  Time to get over my pity party.
Time to go get supper out of the stove.  Thank goodness all I had to do was heat something up tonight because I’ve been “at it” catching up work and trying to fix his computer  since I got home….It’s 11:30 pm. time to start the two-hour process of dinner and getting ready for bed.    Have a good night and stay safe from the hurricane.

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Comfort in the face of the earthquake

Donna and Lynn gazing at each other 2013

I’ve never experienced an earthquake before.  It was a really eerie feeling to have the air and ground moving around me.

I was working at my desk and Lynn was working in the back room at his computer when it started.  At first I just thought it was dynamite being used to get rid of stumps or someone doing construction but it went on way too long for that.  I knew fairly quickly it must be an earthquake and became sure when it didn’t stop.

I admit I was spooked.  I wondered if things were going to start falling (i.e., trees, shelves, whatever).  I quickly looked outside for falling trees (we live in the woods) and was relieved to see none; then I yelled for Lynn.  “Are you okay back there?”  He didn’t answer right away so I quickly went to his room.  He was deep in thought in front of his computer totally ignoring the earthquake.  “Are we having an earthquake?”  “Yes,” he responded very calmly with a smile.  “Do we need to do anything, like get in a doorway or something?”  “No.  This isn’t that bad.  It’s okay.”  He was so calm that I immediately became calm, too.  I felt the comfort of his presence and his assurance.

Being the one who handles almost everything these days, I forget sometimes that he is still my protector and my comforter.  It’s nice to have that reminder.  It felt good to let him be in control for a while.  I miss that.

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Necessity is the Mother of Invention

I’ve discovered that buying things to make life easier for a caregiver gets expensive; however, with just a bit of creativity, you can have devices to help out that work almost as well for a lot less (other than the time it takes to make them). 

Lynn has been a carpenter, is very creative and has come up with a bunch of things to help him exercise.  I’ve been able to look at magazines and come up with ideas also.  For example:
Don’t like covers on your feet?  Lynn doesn’t either.  What did we do?  Took PVC pipe and glued straight pieces and curved joints so that it sits on the floor and rises above the bed height high enough to keep the covers off Lynn’s feet.  Pipes fit under the mattress to keep it stable, and extensions come off the top to drop the sheets over.

Lynn doesn’t like his toes to rub together. Currently, he’s wearing toe socks, but before he started wearing those, I cut up IV tubing from one of his hospital visits to insert between his toes.  Kept them spread just enough without being uncomfortable.

Lying flat on your back, make your back hurt?  Buy some foam bed pads, cut them up into 3′ x 4′ sections, and tape them on top of each other.  Then make a pillowcase to put them in, and you have a pad to put under both knees at the same time to keep the knees bent and pressure off your back.

Does your loved one fall sleep in their wheelchair and then complain that their neck hurts because the muscles stretch excessively?  Take a stretchy cloth headband and some twine.  Tie the headband to the head support on the wheelchair.  Put the headband around their forehead so that when their head falls forward when they fall asleep, it will be in a neutral position and not overstretch their neck muscles.

He has several carpenter friends.  Lynn designs the devices give them the specs, and supervises the construction.  Here’s some of what he has created:

A tabletop for his wheelchair:  He had them cut a piece of plywood that would sit on top of the wheelchair arms.  He had them cut out a curve around his belly and knocked out a section for the wheelchair controls.  It allows him to rest his arms on the tabletop and put plates or drinks there as well.

Exercise equipment for his quadriceps:  He took a flat board and had tracks added to it.  On the tracking, he had them fix a platform against which he could position his feet.  He had handles put on each side of the board at the top then bought bungee cords that went around the end of the platform from handle-to-handle. He pushes the platform with his feet; the bungee cords pull the platform back, so he exercises his quads.

Core strengthening: He took PVC piping a constructed two sections held together by a wooden pole inserted between them. The PVC comes around in front of him and is a little higher on the ends.  A piece of PVC is under the mattress to keep the pipes from moving.  He sits on the bed with the piping around him to balance.  If he starts to lose his balance, he has pipeline all-around to grab.  He also uses it to do push-ups and build arm strength.

Preparation for reeling in fish:  He created a pole on a base with a hinge.  Then he had a bungee cord connected from the tip of the pole to the wall, and he had a fishing reel attached to the pole.  He could practice reeling, and he could pull back on the bungee cord to strengthen his “pull” for reeling in the fish.

What now?  He’s trying to find a motor he can get customized so he can put a trough on either side of the motor that the motor will raise up and down periodically while he’s in bed. This would allow him to flex his leg muscles periodically and relieve the stiffness he gets at night so he (and I) would not have to get up so often.

Creative, huh?  He looked to patent some of the ideas but getting a patent is VERY expensive, so I guess he will be the only one to benefit from his ideas but if you are interested and want to make one of these yourself, send me an email, and I’ll try to get you more detail.

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Love/Hate Relationship with the Night

I’ve always loved to sleep.  I don’t nap during the day, but if I had my preference I would go to bed between 10 and 11 p.m. and not get up again till 9:00 a.m.  A good night’s sleep for me is 9 hours. During that time I might get up once to go to the bathroom but most of the time I would spend in slumber.  I also love after a good night’s sleep to slowly come awake–stretch a bit, and allow myself to fully come awake.

I can’t remember when I last had a “good night’s sleep” based on the description above. I long to go to bed (which is the “love” part of the relationship) but I hate how often I have to get up at night.  A typical night for me now is to get into bed between 1:30 a.m. and 3:00 a.m depending on how long it takes Lynn to eat dinner (he likes to eat around midnight) and how long to get him settled and comfortable afterwards.  It takes him about 45 minutes to eat dinner. After I feed him, then I help him do his teeth. Then I put him to bed.

Bed time is a ritual.  He’s very difficult to get comfortable in bed. Since he cannot move any part of his body himself (other than his left arm), I spend a lot of time moving body parts, positioning them with pillows or whatever, putting corn starch in places that might rub, putting his “contractor prevention” boots on, then setting up and strapping on his Hayek shell (making sure it doesn’t have any leaks) etc.  Meanwhile I put in a catheter to drain his bladder, adjust the settings on the Hayek and heat up 2-3 heating “pads” in the microwave to put in various places against his body because the air movement from the Hayek over his chest makes him cold.  Then he gets some water, sleeping aid, and dry mouth gel.  I pull his covers up tight under his chin and tell him goodnight and then go off to get ready for bed myself.  Some nights I have to repeat some of the above a few times.  Other nights I just about get him settled and his leg starts “jumping” (muscle spasms).
If his leg starts to jump, that means undoing all the above, getting him back up and dressed in his wheelchair, setting up the peddlar (make sure it’s not rubbing any ankle bones after it’s jumped a few times), putting weights on the peddlar so the spasms don’t knock it out of position, then putting a head strap on his head to keep his head from falling onto his chest when he falls asleep and putting a terri-cloth cape over him and his wheelchair so he won’t get cold.  Then I go to bed.

Somewhere around 1 1/2 – 2 1/2 hours later, I hear, “Hey sweetie, I want to go to bed.”  I get out of bed, take him off the peddlar and start the process outlined above (cath, Hayek, heating pads, boots, water, mouth gel, covers).  Then I go back to bed.  Usually about 2-3 hours later, I hear, “Hey sweetie, I need to get up; I’m stiff.”  So up I go and reverse the process again.  Usually I put him to bed about three times a night and get him out of bed twice. The last time I put him to bed is usually when I’m getting up for the day which is usually six or seven hours after I go to bed; sometimes five but always less than it seems because of being up so much.

When I get up most days now, I’m tired, sleepy, and my body aches.  The body aches are a combination of sore muscles from lifting but also age so I guess if I had a full night’s sleep I would still be achy. The sleep deprivation is a bear, however.  Coffee helps a lot but just keeping up movement does, too.  I usually hit a wall around 5 p.m and if I’m lucky, I can catch a 30-60 minute nap before he gets me up for something he needs.  That keeps my feeling pretty rested till bedtime. But with all that I have to do at night now, I feel like I’m “on” 24-hours a day without a break.  Night-time just isn’t what it used to be anymore.

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I Just Can’t Deal With Another Thing.

Ever felt like you just couldn’t take one more demand on your energy?  I was like that last Monday night.  We got home from vacation Saturday and I stayed up till 3 a.m. putting things away.  Sunday was much of the same except it was catching up on things at home. Again I went to bed at 3 a.m. and Lynn was up several times so even though I didn’t start my day till 10 a.m., I was very tired on Monday.  Monday was back to work.  I work from home so after getting up late, fixing breakfast, getting us both dressed and fed, settling him down on his peddlar because his legs were spasming, I didn’t get to sit at my computer till around noon.  However, I had already been handling work on my phone while I did all the above (I’ve become very good at multi-tasking).

All day was busy with work…many phone calls and 493 emails to go through that had come in while I was on vacation.  I got some of those done on Sunday and most of the rest on Monday.  The house was hot all day but so was outside so I turned the fan on me and figured Lynn had set the thermostat so it would be warmer.  (He has hypothyroidism and anemia so he’s cold most of the time now). Around 7 pm I ran to the grocery store because I hadn’t had time since we got home from vacation.  When I came back, Lynn was complaining about how hot he was. He did indeed look like he was melting so I rechecked the thermostat because I had set the temp to cool off while I was at the store.  Well it was set now at 70 but the house temperature was registering as 80.  We had a problem!

Lynn told me how to check the fuses in the garage and I went outside to hit the reset button on the heat pump. That wasn’t it.  Lynn then told me to crawl under the house (I hate doing that.  I’m afraid of snakes and not crazy about spiders or mice in case they are there either).  I crawled over to the inside unit, checked the fuses there–it wasn’t a fuse issue–pulled out the filter–hmmm, when was the last time I changed that?  obviously not recently–nothing worked.  It was so hot, I was pouring sweat.  Lynn needed help so I’m back inside helping him while he’s telling me to go next door to see if our neighbor can help (he’s an electrician).  Neighbor not home.  Dinner still needs to be picked, the house is so hot we are both sweating and Lynn is getting very weak from the heat but can’t go to bed because of muscle spasms.  He’s giving me instructions on how to check this and that and to be honest, I thought if I had one more thing to do I was just going to lose it!

Maybe it was the heat; maybe the lack of sleep for two days in a row; maybe the fact that I had a message on the phone from Lynn’s doctor to call when we got back because his blood work was still bad on the anemia; maybe because I knew the AC was going to cost a lot to fix; maybe the hunger; maybe the guilt from not being able to handle it all with grace; but whatever was behind it, I just couldn’t take it anymore…..

But, when you are a caregiver, you don’t have the luxury of giving up. Who else is going to handle it if you don’t?  Lot’s of people are helping us and many more are offering to do so but when you are home alone with someone depending on you and it’s night-time and you know that anyone you call will be burdened, the weight of the responsibility seems like a 2-ton boulder. Know what I mean?

I managed to get through it all that night.  I took several deep breaths, ate a bowl of ice cream (that’s why I’m so fat now), and called my angel of a son-in-law who got dressed, came over and worked on the unit.  He couldn’t fix it but his parents had a window unit they were not using and he went and got that for the bedroom so Lynn could get cooled off.  He was our hero and guardian angel all rolled into one.  God took care of our needs again and gave me the strength to carry on.  He sent my son-in-law who is like a son to me to shoulder my burden and help me to keep putting one foot in front of the other. 

Thank goodness when I can’t deal with another thing, God sends me someone to help carry the load and help me to continue on our journey.

I Just Can’t Deal With Another Thing. Read More »

Triumphs and Disappointments

As skin ages, it loses elasticity and the ability to self-repair as quickly. Good skincare is essential in preventing injury to the skin that can lead to infections.

We are on our last day of vacation, and as usual, I think everyone is looking forward to going home–although we have had a great time. There is no place like home, is there?

For instance…I helped Lynn take a shower yesterday in a regular shower stall.  I put in the shower chair for him to sit on and then stood outside the shower to bathe him.  Water everywhere, of course!  No room to move him. Had to have his son help me get him out.  Lynn and I were both exhausted, but the mission was accomplished.  I am sooo looking forward to our own shower unit that was installed by our church so I could roll him in and out.

Our own bed…that will be nice too.  Appliances that work and the cookware and utensils we need for dinner. Not having to put all the tables on books so Lynn can get his wheelchair under them.  Not having to remove a screen door so he can get onto the deck.

We had a few disappointments.  The biggest one was we tried to take his all-terrain wheelchair crabbing one night.  He spent a lot of money to get this special chair so he could surf fish and go on the beach.  Imagine our disappointment when he could not get it to move on the sand!  The chair was ordered from South Africa, so getting it fixed will be challenging, but we have already talked to them, and it appears to be a programming issue, so there is still hope.  But we will not be on vacation when it gets fixed-disappointing.

Started to go fishing last night.  Got everything ready, headed out the door and it was pouring rain!  We waited a while then decided to get up early this morning to go.  We did, got to the pier around 7 a.m. and fished two hours.  Several bites but all we caught was seaweed.
Now the triumph! And this is big. Lynn went swimming in the pool.  The boys sat him on the side of the pool till he got warm, then he went in.  The first day we went into the pool that was only 3 1/2 feet.  It was fun but challenging for him to do anything much.  Yesterday he went into the 5-foot pool, and it was awesome.  I was able to help him float around using afloat.  He was ready to kick his legs.  He was even able to float on his back alone, and he’s never been able to do that, but the best part…the very best part was…HE STOOD UP IN THE WATER ALONE!!  Ten times!!  He supported himself with the float.  The boys were on each side to help him get positioned right; then he pushed himself upright.  Awesome… My daughter has the pictures to prove it.
Triumphs and disappointments…. what experience doesn’t have them but all in all, this vacation was awesome. We’re so thankful to have the opportunity to once again vacation together, and to have a break from all the usual challenges.  I hope you get to have one this year too.

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Vacationing with MS

We are on vacation.   It’s so nice to be away from home, with the sound of the beach in the background and our children around us but unlike the days before MS, vacationing with MS is not a relaxing experience.

First is packing to go…I had to pack his cool vest, his exercise equipment for balancing, his Hayek vent, his peddler, medications, two power chairs (one is a 4-wheel drive for the beach), one manual wheelchair, a shower chair, nebulizer, catheterization supplies, and then the regular things you take with you.

I rented a wheelchair van this year because Lynn’s leg spasms are so bad I was afraid he would have a set-back if he had spasms all the way to the beach.  The van allowed him to sit in his power chair, and if his legs spasmed, I pulled over and connected him to his peddler.

My daughter and her husband drove along with us and had to put most of our luggage in their car because our van had so much equipment in it. All the way here, I was driving and addressing his various needs at the same time.

Then we got here and unpacked the vehicles and discover that the entrance ways have a steep threshold so fortunately, I thought to pack a portable ramp so we could get the wheelchair into the condo.

Once inside, we need to move the furniture around so the wheelchair can get by things without damaging anything. We test out the bathroom–powerchair won’t fit so we test the manual chair…it’s tight, but it fits.
Today we tried to take him swimming.  It worked, but it took our two boys to lift him into the pool and me to hold his head out of the water while we floated around….but he was able to “go swimming.”

I used to get up first thing at the beach and go to the pool for the day.  I would read 4-5 books during the week.  So far, I’ve read three chapters.  Here when I get up I get myself ready, fix his meds, get him up, fix his breakfast, help him eat if he needs it, take care of his morning hygiene, then he rests a while and needs to be cathed again, then he needs this or that, after about three hours, I can go to the pool for a while but with a walkie-talkie in case he needs to be cathed again.
Not like it used to be, but it’s still vacation, and it’s still good to be away.  Tonight we’re going to try to go crabbing after dark using his all-terrain wheelchair.  He hasn’t used it yet, so we hope it works out for him.  Let’s hope he doesn’t drive it into the ocean or get stuck in a sand bar!   It’s all good though, and we’re glad to have this time together as a family.

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We have MS

You will notice as I write these blogs that I always talk about “we”–  “we were in the hospital,” “we are learning to live with xxx.”  I don’t mean to minimize that Lynn is the one with MS and he is the one who ultimately has to deal with the frustrations, pain, discomfort and significant changes in his life, but he was not diagnosed with MS alone, WE were.

 What happens to him happens to me.  When he can’t move, I move for him.  When he needs information, I get it.  If he needs equipment, I find a way to get it.  If he gets upset, I deal with the emotions.  If he wants to get from point A to point B, I get him there.  So Lynn is not the only one with MS; I have it too.  I live with the frustration of being housebound most of the time.  I live with the fact that he needs to be catheterized every two hours so I can’t go away for long.  I live with being interrupted every few minutes all day and night to help him do what he needs to do. My life is no longer my own–my life is now dedicated to making his better and bearable.

So if you wonder why I refer to everything that happens to him as if it happens to me too….it does.  Just in a different way, but I have MS too.

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Like father like son

Husband and wife out for a stroll.

Lynn’s son might have MS.  He is still going through testing and if he has it, it’s very early in the disease process.  Lynn’s father had MS, then Lynn, and now his son.  When Lynn was first diagnosed we were told it was not a genetic driven condition but there might be a predisposition to it.  Well, based on this family’s history, I’m inclined to think heredity plays a big factor.

We have shared information with Lynn’s son about signs and treatment as we have learned about them.  He and his fiance have also researched it a lot so they decided to go to a new doctor and get a complete physical just in case.  He was seeing the same doctor that missed Lynn’s diagnosis and when vision pain started and that doctor didn’t take it seriously, it was time to move on.  His new doctor referred him to a neurologist so we asked Lynn’s doctor to take him on as a patient, and he did.

His son’s symptoms are very mild–hyper-reflexes and a blind spot in his left eye.  He may not have MS but just in case, he is having an MRI.  If it is MS, he will have gotten it diagnosed early and treatment can start early so he may not have the same problems Lynn had.

But even though we knew it could happen, and we knew all the above, it felt like a gut-kick when he told me he might have it.  I know he will handle it well and I know we will be there for him, but I had so hoped he wouldn’t get it. He is very different in his hobbies and what type of chemicals he has been exposed to so we had hoped he would be spared  and maybe he will dodge this bullet too, but it was a gut kick anyway.

His son is handling it very well.  He is taking it in stride and he and his fiance have a great attitude about it.  I was worried about how Lynn would take it but he has also handled it well.  I guess over time we have all prepared ourselves for that news…so it’s just one more adjustment and one more detail that is part of who we are.

But it doesn’t mean I have to like it.

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Hayek Ventilator

An example of an external ventilator.

In late May 2011, Lynn became very sleepy.  He was so tired he could hardly stay out of bed.  I listened to his lungs, and they sounded very noisy in some areas and almost no movement in others.  His home health nurse thought we should go to the ED, and finally, even he agreed.  We went in on Friday, and he entered the Neuroscience ICU immediately.  On Saturday, his blood gases were so bad that had his gases not improved within a particular 30 minute period, they were going to intubate him and put him on a ventilator.  They warned me that if that happened, he might not be able to come off because his lungs had gotten very weak.

That was the first time that I actually got scared about the possibility that Lynn might die.  I was alone at the hospital, but I had lots of support there. I had many friends among the staff members and knew they were all doing their best.  We had one excellent Respiratory Therapist that was keeping watch on him, so I knew he was in good hands.  However, I couldn’t trust that those hands were enough, so I sent out a call for prayer to several people.  When I got back messages they were praying, Lynn started to wake up, and he started making progress toward getting better.

Lynn hated the mask he had to keep on to help him breathe, but if he took it off, his oxygen levels became too low. God was again looking out for us because the Respiratory Therapist knew about a new device that she had seen used successfully for cystic fibrosis kids and ALS patients.  It was called a Hayek ventilator.  It works on the iron lung principle, but it’s very lightweight, and the patient can move around with it if needed.  She helped get it for him, and he found it to be very comfortable and an effective way to support his breathing without a mask!

Now that his lungs are better, he uses the Hayek only at night in place of BiPAP. (Bipap is like CPAP – continuous positive pressure, but it also delivers intermittent breaths).  I put the Hayek over his chest when he goes to bed, strap it on, so there are no air leaks and turn on the machine that pumps the air in and out.  As the force of pressure pushes down and releases on the chest, breathes are drawn into and out of the lung (inhalation and exhalation). The only thing uncomfortable is that it makes him feel cold (but he has hypothyroidism as well, so he’s susceptible to cold.)

If your MS patient has any respiratory issues or even sleep apnea that doesn’t respond to CPAP or Bipap, check this out.  Go to www.Unitedhayek.com  It made a difference for Lynn.

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I am so excited.  Lynn was able to type using both hands yesterday!  He hasn’t been able to do that in months. He also was testing out whether he could hold a fishing rod and he was not only able to hold it but to reel it as well.  He hasn’t been able to fish, which he dearly loves to do, in a couple of years.  For the first time, we have hope of improvement, and it’s all thanks to plasmapheresis.

Lynn was in the hospital in May with respiratory depression.  A week after his discharge, he noticed a significant decrease in movement and concluded he was having an exacerbation.  Since he got steroids while he was in the hospital trying to improve his breathing, his doctor did not want to do that again so soon.  Instead, he proposed doing a series of plasma treatments called plasmapheresis.  He would have five treatments, and if he noticed improvement; maybe two more.

Plasmapheresis is a process where they put a central line into either your neck or groin and through that point, remove all the blood from your body and run it through a centrifuge that separates the Red blood cells, white blood cells, platelets, and plasma.  You get back the RBC, WBC, and platelets but you get back albumin (liquid protein), saline and other stuff in place of the plasma. Removing the plasma reduces the inflammation produced by the antibodies in the nerve.  

Plasmapheresis is done every other day so that the body has time to pull more antibodies out of the tissues to be removed. Lynn saw improvement the next morning after the very first treatment.  Each time he got a little more function back.  He was tired but felt pretty good for treatments 1-5.  Treatments 6 and seven hit him hard.  His hemoglobin had dropped so low that he felt pretty bad. 

It’s taken about two weeks to get him back to normal now that he’s been home, but he’s doing awesome!  His doctor said he might continue to improve for a few weeks after discharge, and that seems to be the case.

So if any of you are like Lynn and steroids don’t help but make you a crazy zombie who feels like a Mack truck ran you down, then ask your doctor about plasmapheresis as an option.  It doesn’t work for everyone, and it’s not an option if you have heart problems, but if it does work, it’s fantastic.  Well worth trying.

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Stiff as a Board?

All my life, I have heard people say something was as “stiff as a board,” but it wasn’t until Lynn started struggling with MS that the phrase took on a literal meaning to me.  I had also heard of spasticity, but I had no idea just what that could mean.  Early on, Lynn started struggling with spasticity (or a better description would be spastic paralysis).  His legs would suddenly become so stiff that even if I used every ounce of strength I had, I almost could not get his leg to bend.  It was the spasticity that finally made him stop driving.  His leg would not bend so that he could brake or accelerate!  Sometimes the spasticity would last a few minutes, but gradually it became a constant thing.

In addition to the spasticity, he also had muscle spasms.  His leg will begin to tighten up like a spring beginning to coil, and then the leg will spasm with a kick outward.  Sometimes the contractions are just annoying–other times they are so intense they are painful.  Sometimes it’s one leg–sometimes both.

When Lynn and I got married, he was a smoker, but he cut way back on smoking cigarettes.  He would only smoke at work or have one at night. When the spasms started, smoking became his only relief.  I hate cigarettes, but I would buy him a case at a time and gladly light one up for him rather than watch him suffer.  It was amazing.  His leg would be so incredibly stiff that it would be sticking straight out.  He would take two or three hits of the cigarette, and I could literally watch the stiffness release and his leg become limp again.  The same was valid with the spasms.  Smoking would relieve them when nothing else would. It wasn’t the nicotine either; it was something else in the cigarette because nicotine patches did not provide the same relief.
In 2009, Lynn had a baclofen pump implanted.  Baclofen is a muscle relaxer used to treat spasticity.  His oral dose was very high, and yet the spasticity was not being relieved. His doctor advised getting an intrathecal pump implanted (that’s a pump that is implanted under the skin and holds medication that gets pumped into the area outside the spinal nerves by way of tubing inserted into the spinal column.)  He did, and it helped a lot.  The spasms stopped, and the rigidity greatly improved.  Over the next year, the dosage gradually increased over several months until most of the stiffness (tone) came under control.

In November of 2010, Lynn entered the hospital with an infection, and while there, coughed up a nasogastric tube that was giving him a tube feeding. He aspirated nutrition and developed pneumonia.  Being in the hospital with pneumonia forced him to stop smoking obviously.  He didn’t want to begin smoking again after his discharge, but he still had spasticity.  He found another way –an electronic peddler.  Now when he feels the tension increasing, he peddles.
Unfortunately, the relief granted by the peddler was temporary. The spasms have returned. They have come back so frequently that peddling off and on around the clock is required. He even has to peddle while he sleeps!  He goes to bed, and the leg starts to jump.  Then I get him up into his wheelchair and attach his legs to the peddles.  I go back to bed, and he sits and peddles. The peddling then relaxes the spasms, and he falls to sleep.  We have adapted his wheelchair so that we have a board in front he rests his arms on, and I have a headband I attach to the back of his chair so that his head won’t dangle and cause neck spasms.  He sleeps that way for a while, then wakes me up, I put him back to bed, and he sleeps till the spasms start again.  We are usually up and down like that a couple of times a night.
What would be helpful is if there was a device we could put in the bed that would alternately raise his legs while he slept so the tension would be relieved and he could stay in bed.  Does anyone know where we could get such a device?  His hospital bed was like that, but we don’t want to use a hospital bed; they aren’t particularly comfortable.  Got any ideas?

Stiff as a Board? Read More »