MSCaregiverDonna Blogs

Blogs previously published on my MS Caregiver Sharing Website when I first began writing about my caregiving experiences after Lynn was diagnosed with multiple sclerosis in 2006.

Weathering the storm

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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!

Weathering the storm Read More »

I have the blues today

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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.

I have the blues today Read More »

Comfort in the face of the earthquake

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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

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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.

Necessity is the Mother of Invention Read More »

Love/Hate Relationship with the Night

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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.

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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

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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

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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.

Vacationing with MS Read More »

We have MS

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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

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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.

Like father like son Read More »

Hayek Ventilator

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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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Plasmapheresis

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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?

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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?

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Wondering where this road will go

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Ever make plans for the future that didn’t quite turn out as you had hoped?  Yeah, who hasn’t.  That’s how MS affects my life.  We make plans and then he has a new struggle to deal with and the plans we had, take a back seat.

This is a second marriage for Lynn and me.  When we got married, I had two children and he had one whom he had with him intermittently.  He had a log cabin with two bedrooms; I had a house with three and a foundation for a fourth.  Therefore, we moved into my house.  Lynn is a carpenter by trade and had built his log cabin. Therefore, we decided to buy land and build our own home, literally.  Lynn designed the house, sent the plans to a timber frame company who took the plans and created shop drawings. We bought the timbers, he then took those plans, and in his spare time after work, he cut the timbers for the tongue & groove assembly. On weekends, he put in a foundation for the basement which took two years for him to do on his own.  By the end of the two years, the fatigue from the MS made it difficult for him to tolerate working more than an hour.  If it was hot, he couldn’t work at all.  After finishing the foundation, he began to put stone on the columns that would be the porch.  I had to mix the cement, bring him the stones and help him hold them in place at times.  Gradually, he could not do even that.  So now we have land with a finished basement and a few columns with the stone in place.  He hasn’t felt like working on it in over two years.  Plans change…

During the past two years we have been dealing with his change in mobility.  Two years ago he was able to walk with a rollator. Now he uses a powerchair and has limited use of his right side.  In the mornings he can feed himself.  By night he can’t do that.  On his “bad” days, I feed him every meal and do everything for him including scratching any itch, helping him unclench his curled up fingers from spasms, helping him change positions…just about everything.  So instead of building a house, we have focused on adapting this one.

Has your loved one gotten a powerchair yet?  They are wonderful but not always the easiest thing to get into and out of tight spaces.  When Lynn first got his, he wanted to see how fast it would go so he would get at one end of the hall and “run” to the other end.  Sometimes he would try to make the turn into the bedroom door.  Not such a good idea.  We eventually had to take down the door  because he hit it so many times, it was coming off its hinges.  We also had to put up metal plates over areas in our walls where the metal foot plates of the chair would hit the walls and cut into the sheet rock.  We currently have a rather large hole in the wall where the handles behind the chair cut into the sheet rock when he turns into the bedroom.  Where before I used to care about my house looking neat; now I just care that it’s functional.  What’s important changes…

When Lynn first got his wheelchair, he was embarrassed to be seen in it.  He was dealing with the loss of his image as a man and a provider.  He did not want to be seen as weak or have people feel sorry for him so he would tend to avoid people.  Me, as I mentioned before, I’m a realist.  If he needs a wheelchair, he needs a wheelchair and I don’t care what people think.  The wheelchair made our lives easier and that’s all that mattered to me but I had to be sensitive to how he felt. That got frustrating because I wanted him to still go to church with me and I felt he was letting his pride get in the way of living his life.  So I would have to remind myself that this was his life and his way of coping.  I needed to let him adjust the way he needed to–gradually, a little at a time. So for much longer than we should have, we used a rollator as a wheelchair so that he could tell himself he was not wheelchair dependent yet.  He finally made the transition to the wheelchair when circumstances made it necessary for us to use one for a while on a trip and he saw how comfortable it was.  Adjustments take time….

We are at a point now where we are trying to decide whether to finish that house we started.  We have prayed a lot about it, especially Lynn.  He was talking to God one day and asked Him to let him know what he should do.  Out of the blue, he got a call from someone asking if we wanted to sell that land.  So you think, is that the answer, to sell the land?  We don’t think so.  The person who called wasn’t really interested in buying; he was a builder and wanted to finish it.  He wasn’t the one to do that because he had never built a timber frame house before but it got us thinking that we needed to make a decision.  I contacted a friend whose husband build’s timber frames. He was great!  We felt very comfortable with him and feel like he’s the one to build it.  Lynn can be the general contractor since he knows how to do that so he can feel that he’s still in control of finishing the house.  We have many friends who are tradesmen; so he’s contacting people for bids.  We are still deciding what to do–need to make sure we can afford it since this house might not sell well–but it’s giving him a project and a purpose which has been missing for a while.  So again,  plans change or do they just roll around again?

I have my fears about building the new house.  I’m the only one working…what if I get sick and can’t work?  What if we start building and he get’s sicker and can’t finish it?  Should we save the money so I can hire someone to help me provide his care?  Do we adapt this house more (we’re talking major bucks to make the changes we will need) or just fix up this house to sell and adjust the floor plan of the timber frame?  Either way is not cheap.  If we move, we will be further away from my daughter and her husband but closer to our two sons and my job.  My daughter is ready to start a family and I want to be near our grandchildren.  Will moving further away make that more difficult to do?  So many questions.  Most of my fears I try to keep to myself but sometimes they get overwhelming.  I’m the caregiver.  I have to look out for both of us and our future.  I want the new house but he’s been in the hospital three times already this year; is it a good idea to build a new home? So many questions and so few certainties.  So I leave this blog with the request for prayers from you that God will show me what to do…to make it clear what our decision should be about the house(s)… will provide a way for whatever that decision may be and help me to find peace in the decision.

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Starting Down the MS Road

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I knew very little about MS when Lynn was diagnosed.  I knew that it was a nerve condition and that it was often first diagnosed due to vision impairment.  I also knew that it affected a person’s ability to walk.  However, I knew very little detail about it–like there were four types.  So my first way of coping was by reading.  I love to read.  If I’m sitting still, I have to be reading whatever is around me (unless I’m watching TV of course).

I have found that the more I know, the better I can cope with what is going to happen not so with Lynn.  I was looking up everything I could find on the internet and reading all the information we were given by the doctor. He didn’t want to know anything. Still doesn’t. I would find something that I wanted to share and he would tell me not to.  He has the belief that if you know what COULD happen (i.e., the bad things) then just by remembering, they are more likely TO happen. There’s something to be said about that.  If you feel bad and don’t know what is wrong, you keep pushing ahead but if you find out that you have a serious disease, then suddenly you start acting more like you have a serious disease….not everyone… but a lot of times that happens. So I look up things and keep them to myself.  I also find out things from the doctors or other healthcare professionals about what could happen and keep it to myself.  It’s hard not having anyone to share that with.  I respect him not wanting to know, but it’s hard being the one to know that the procedure he’s about to have could result in x, y, z.  Most of the time it won’t, but I’m a realist, and so I look at all those possibilities and think about the “what if’s” a lot.

That’s the main reason I started this blog. I don’t have anyone to talk to about the “what ifs” that understands.  I’ve thought about joining a caregiver support group, but that is impossible for me.  Lynn can do very little to help himself right now and cannot be alone for long periods.  It’s difficult to have someone stay with him while I’m gone because he’s on intermittent catheterization and he cannot help transfer to or from bed to wheelchair.  That limits who can help a lot.  We also live in a rural area some 45 minutes from Richmond, so anywhere I would go to attend a meeting would mean being away a long time.  That is just not possible.

When Lynn was in the hospital recently, I met another wife of someone with MS.  We had a lot in common; particularly the inability to go to support groups and the desire to share with someone who understood.  I thought then that maybe there was a way to have a virtual support group online.  I set up a Facebook account, but I don’t know how to get the word out on that plus I don’t want strangers to have access to the lives of my “friends” so I thought maybe a blog would be better.  A blog would allow me to share and others to comment and share as well.  That would be the closest thing to an actual support group.

So if you also want to share your story, trials, and concerns, I’m here to listen.

Just a few suggestions about sharing:

  • Remember whatever you say is public and may be seen by anyone, copied to other locations, or misconstrued so be careful what you say.
  • I recommend not fully disclosing who you are or where you live so you can maintain some privacy, but that’s up to you.
  • Keep it clean.  Please do not use profanity, make crude comments, be disrespectful or insensitive.  If you do, I’ll delete the comment.
  • Please do not use it to add spasm, solicit business, or bash anyone.  Again, …I’ll delete it.

My hope is this blog will be a place to share and gather support.  If you have something to share or something to ask, feel free to post a comment.

Starting Down the MS Road Read More »

Being diagnosed

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My spouse was diagnosed with MS in the fall of 2006. Since that time, the journey we have taken has been a whirlwind of change and adjustment. Realistically, I believe he had MS for many years before he was diagnosed. The signs were there–dragging foot, progressing to leg weakness, and then difficulty standing straight when he was tired. His father had MS, back in the day when there was no treatment. He died before he turned 50 and was bedridden most of those last few years. With that family history, you would think Lynn would have been diagnosed early, but that was not the case. As with many MS patients, the symptoms came and went. Being someone who hated to go to the doctor, he let the symptoms go. When I would nag him about asking his doctor if he had MS, he would assure me that he had and that he didn’t have it. Knowing him, I was sure that on the rare occasions he went to the doctor, he was minimizing what was happening (if he said anything at all). Back then, he felt great. In fact, if you asked him how he was doing, he would say, “If I was any better, I couldn’t stand myself.”

Lynn has always been very health conscious. He eats a healthy diet, has always exercised regularly, tried to live a relatively healthy lifestyle. He had a good mental outlook on life, had lots of things he enjoyed doing, and was talented in many ways. His spiritual life was strong–he had/has a solid foundation in Christ and was active in his church home. Life was good.

Then I noticed him one day wiggling the fingers of both hands and watching them closely. I asked him what he was doing and he mentioned that the fingers on his right hand were slower than the fingers on his left. That alarmed me. I told him that something might be wrong in his back (not mentioning that I thought it was MS) and that he should have it checked out. He told me not to worry. I insisted something might be wrong and asked to accompany him on his next doctor’s appointment so I would know what was being discussed. He agreed.

His next appointment was with a cardiologist. He has a mitral valve prolapse that is being monitored but he has no symptoms. Because it could one day require a valve replacement, I usually go with him to those appointments. I work in the hospital where he goes for doctor’s appointments and knew his physician. After his examination of Lynn, he asked me if I had any concerns. I told him not about his heart but explained my concerns about what I had seen. He asked if I wanted him to get Lynn an appointment with a neurologist and I said yes. That’s how he came to be diagnosed.

First, the MRI showed lesions. Then there was the lumbar puncture. (If you have never had one of those, they numb your back and put a needle into the spinal column to withdraw spinal fluid to test). His test came back positive for MS.
We got the news on our way back from a weekend at Hatteras fishing. I knew what the verdict was going to be before we got the call. I had watched Lynn barely able to walk back and forth from the beach to the motel room. I saw him unable to stand up straight like his back was made of melting butter that would thicken up if moved away from the fire but then begin to puddle and shrink if moved closer to the flame. I think we both knew but were praying we were wrong.

The call came over his cell phone just before we arrived home. He took it while he was driving. I knew from his end of the conversation what was said. I held his hand, and neither of us spoke. We got home, and I started to unpack the car. He stayed outside. When I came back, he began to cry–not so much for himself but for his son. He knew what it was like to have a father with MS; to see the struggles and to know that he might have that same struggle in the years ahead.

After we both cried, we both prayed. We prayed for strength to face what was ahead and to make the right decisions about whatever options we were given. The caller had offered to set up an appointment with a neurologist who was also doing MS research on the effectiveness of taking two of the common MS drugs together to see if they reduced the occurrence of exacerbations. We said that would be good and so we started down the road to living with MS.

Being diagnosed Read More »