MS Information

Information about MS, the symptoms or treatment

Information from WeGO Health community

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This announcement was sent to me for possible inclusion on my blog.  If you’re interested in joining the WEGO Health community www.wegohealth.com , it seems to have a lot of resources.
Announcing the 2012 Health Activist Awards!
We’re excited to announce the start of the WEGO Health Activist Awards Nominations!  This year, we’re extending the nomination period and we’ve added some exciting new award categories but we’re hoping you’ll take a moment to recognize all of the people who make a difference, offer support, and share information in your online health community. 
Not sure who to nominate?  Recognize your favorite blogger or tweeter, the person who always make you laugh, the community member who’s always there to offer support, or those who inspire you to do more – we’ve got an award for everyone!  If you can’t think of someone to nominate right this minute but want to be kept in the loop on the Health Activist Awards, join the WEGO Health network at www.wegohealth.com – we’d love to have you as a member!
Cheers,
The WEGO Health Team

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"I Know Someone With MS…"

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When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example:
“My friend’s sister has MS but they’re fine”
In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives either full-time or temporarily. So if the person you are talking to only knows someone who is “fine” then they have difficulty comprehending the nature of the condition and the potential restrictions imposed and may even wonder, “what’s the big deal?”  They just don’t get the condition.
“My cousin has MS and has to use a cane.”
If they know someone who has mobility issues, then they seem to have an idea that someone with MS has struggles to overcome on a regular basis.  They understand there are special needs and often associate MS strictly with mobility challenges.  Often they have no idea that MS can affect any function of the body either completely sabotagizing it’s ability to react normally or at the very minimum, creating an annoyance on a regular basis.  They have no idea that a person’s bowels, bladder, eyesight, memory, sensory stimulation, hearing, speech, eating, …you name it… can be affected. There is much they do not know but they at least have some insight.
“My sister has MS. What an awful condition.”
Once it’s in the family though, they realize just how devastating the condition can be.  They understand that the person with MS struggles each day to be “normal” to be able to have a “normal” day and fit in like everyone else. They realize that one minute the person may be fine but the next they are so exhausted they can hardly function and where before they could walk alongside someone, once they hit that point that fatigue takes over, they rarely can keep up. They know that some days they feel like a heavy weight is sitting on their shoulders and other times they are optimistic and hopeful.  They know that each new “odd” sensation raises the question of, “Is this an exacerbation?”  “If it is, how bad will it be this time and will it go away or linger?”
I see one of my roles as an MS Caregiver to be that of educating others. In the grocery store, at work, wherever I meet someone who asks about Lynn and his condition, I try to clear up misperceptions and provide insight into what MS is all about and most importantly, that it’s different for every person they will meet.  No two people with MS seem to be affected the exact same way.  Each MS person knows they are unique in their personal struggles but at the same time they are a member of a larger community who has to learn to cope each day with what that day brings. 
That’s one of the reasons why I write this blog, too.  I want those who read it to know there are common struggles but each person is unique. Don’t look at Lynn if you’ve just been diagnosed with MS and believe you will be wheelchair dependent and unable to fed yourself in less than ten years after being diagnosed because that is probably not the case. I tell anyone who listens that the only way to deal with MS is to take each day and each minute in that day for what it brings in that moment.  Don’t look too far ahead or focus on what was left behind; just do your best with what you have that day and keep the faith (literally) that God will give you the strength to carry on through one more day and one more triumph.

"I Know Someone With MS…" Read More »

Oh, no. Is that a skin tear?

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For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved.  Skin has miraculous healing powers.  Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost.  It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day.
When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient.   For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s NOT working properly much of the time.  Then, if there are mobility issues, the circulation to areas that do not move as well is often impaired and that slows down wound healing, too.  On top of that, if you’re taking an interferon like Rebif, then you could suffer from a decrease in the production of replacement cells.  And on top of that if you’re on steroids, your wound healing is REALLY impaired.  So getting a skin tear is a big deal with a wheelchair-bound basically immobile individual.
That being the case, when I give Lynn a bath, I really try to check out his skin and keep a watch on any cuts or scrapes that might be present.  He gets a lot of skinned elbows because he doesn’t pull in his arms as he should when rounding a corner going into a room(and no, he won’t wear elbow pads, I’ve tried).  Usually those heal pretty well because he moves his arms a bit more than his legs.
My greatest worry though are open wounds on his buttocks.  He has two almost pin-head size openings on his buttock near his coccyx.  Not a good place to have one. He can’t sleep in a bed right now because his legs are so uncomfortable so he sits in his wheelchair probably 22-23 hours a day–that’s a lot of time sitting on one part of the body; plus he doesn’t move his core very much.  He can’t really reposition himself in his chair other than to tilt his chair backward so he can slide backward.  Therefore, to get a wound on his coccyx area is a big deal. It’s a risk all the time for more shearing with movement and the pressure makes circulation to the area less. 
He has had buttock wounds before and I’ve tried various types of skin barriers and patches to treat them. Often the patches, even though designed for wounds, tend to tear the skin in other places when they are removed due to the adhesive. I’ve had small areas the size of pin-heads enlarge in a week to wounds the size of a quarter due to removal of bandages or dressings. It’s very discouraging and something to watch very carefully.
I know from when I was working as a nurse that patients who do not manage skin wounds well can die just from the horrible wounds and infections that develop over time.  I also know that at times the layers of tissue under what appears to be a scab are often continuing to deteriorate.  Wound care is very complex.  If the person you’re caring for gets a wound that keeps getting bigger rather than smaller and isn’t in time, showing the nice pink edges of healing, or if the wound starts to smell or drain a lot, see a doctor or wound specialist pronto.  Skin wounds are nothing to ignore.  Take them seriously and don’t wait, too, long to have someone who knows how to treat them properly  take a look.  If you don’t, the results can be tragic.

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Live in the Moment

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One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….
Donna

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Depression

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Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

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I Don't Know What I Don't Know

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Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

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Free to a Good Home…with patience

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Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal.  However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable.  He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day.  I put him on his peddler and start the process of my dual life.  I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …).  He just can’t get comfortable.
Then there’s the irritability…  I have a baby monitor that sits beside my work computer so I can hear what he needs.  His “comments” generally indicate a great deal of frustration.  I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two.  He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed.  That is one of the major side-effects of this drug.  In fact, it can lead to suicide.  He’s not there or even close but he was nearly in tears this afternoon talking about being afraid.  Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way.  That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad.  He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy.  I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on.  I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted.  My job needs my attention more these days.  My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together.  (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out.  Last night I had to get up to either cath him or help him get comfortable literally every hour and a half.   I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this.  I dread the next two months as his medication titrates upward and he will most likely get more side-effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side-effects to settle and become manageable?  Thanks

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Grieving over things lost

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I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

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MS Connection Site correction

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Last week I mentioned that the MS society had established a new site to help connect individuals interested in MS. I did not realize at the time that I was using a test site and I gave you the wrong web address.  The site is now open for business at  http://www.msconnection.org.  I hope you will check it out.  There is a discussion group for MS Families called “Care and Support” that can be used to ask questions and get advise from others.   I’ve posted some of my most recent blogs to the site as well.  I think just over 300 individuals were invited to participate in getting the site started before it’s opening day so there is already a lot of content there and should be more as others join in.  I hope you too will take advantage of this opportunity to connect to others.

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Connect the Dots

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When I was a child, I loved working pencil and paper puzzles. You know the ones I’m talking about?  There were dots, numbers, or letters on a page and as you connected the dots, a picture emerged.  What I did not realize at the time was that doing those pictures was actually very educational.  I learned hand and eye coordination.  For the number and letter ones, I practiced adding or learning my alphabet.  The older I got, the better I got of course but I always loved doing those.
I also liked the mazes.  Sometimes I would cheat (start at the end and work to the beginning) but most of the time I liked thinking ahead, planning my approach and seeing if I could find the best route. 
Life reminds me of those puzzles.  Sometimes I feel like I’m connecting the dots and following the steps in a logical manner.  Other times, it’s like I’m lost in a maze.  I go along fine for a while and then “bump” I run into a wall and have to back up and find a new route.  Doesn’t that sound like life as a caregiver?
When Lynn was first diagnosed with MS, I used my connections at work to start down our path.  I work in a rather large medical center and I know lots of people throughout the center.  I had accompanied Lynn to his cardiologist’s appointment (Lynn also has mitral valve prolapse) and his doctor was asking how he was doing.  I told him that I though his heart was fine but something was wrong with his back.  He asked me who I wanted Lynn to see, I gave him a name, and he got me (Lynn) an appointment. From there we worked our way to a neurologist who was conducting an MS study and he became Lynn’s MS doctor.
Though participation in the MS study, we became friendly with the study nurse.  As I was sharing my concern about how Lynn was feeling and that I though it might be diet related, she suggested a dietician her husband had used.  This dietician had a great interest in MS and she’s the one who found the MS diet that Terry Wahls developed which seems to be making Lynn feel better.
Not everything along this path was a “connect the dots” puzzle. The journey to deal with his severe spasticity was more like a maze.  We tried baclofen tablets until the dose was so high it was obvious that it would not work even with other medications added to make it stronger.  We tried a chiropractor which helped his back but not his muscle spasms.  He tried massage but it released so many toxins in his body that he felt worse.  Then there was acupuncture which for him only caused the spasms to get stronger.  Finally we resorted to a baclofen pump implant so the dose went directly into the spinal fluid. That fixed his legs but now he’s struggling with his arm being tight as a drum. So we turned another corner and tried botox to paralyze the muscle temporarily which worked well for the first few doses but not as good for the last two.  So we back up into the maze and are trying exercise and stretching and next week will try massage again.  So far we have not found the right path in this maze.
But through our MS experience, we have made great connections.  We have some wonderful medical professionals that support us and who truly work to research solutions to his problems.  Our church has been awesome….so many people who hear about our needs and who support us in prayer, donations, assistance of all types.  Our struggles have brought us closer to each other and to our families who stay connected to us now more than ever so they can assist us in whatever we need.
One of the best connections I’ve made is this blog.  I have had so many people connect with me who are experiencing some of what we go through and it’s very comforting to know that they are there.  Knowing how someone else has handled a situation or even just knowing that someone has the same struggle and is hanging in there and surviving each day helps us to push on. 
When Lynn became unable to move around on his own, we stopped going many places.  Mainly now we go to medical appointments or occasionally to the store for something only he needs (he is the only one who can determine what he needs in that department since I am totally incompetent when it comes to figuring out what is needed to fix something).  But even though we are now pretty isolated, reaching out through the internet to find out information or to connect to other caregivers or people with MS keeps us from feeling as if we are isolated.  True, it’s a virtual visit when we talk on-line, but it’s no different from a telephone call and when it’s on-line, it’s on my time which gives me more freedom and more options.
So even though it’s difficult to stay connected if you have MS, it’s possible and it’s necessary.  I cannot get away to go to support groups or conferences but I’ve found out SO much about treatments and options on MS  websites and by reading blogs or comments by people with MS or their caregivers.  We don’t have to be in this alone even if we live alone or in virtual isolation.  That’s why I started blogging.  I wanted to connect to others and hopefully share experiences or something that might make my experiences easier to accept or someone else’s easier to manage. 
I think the MS Connection site that is being set up by the National MS Society and which will go live March 12 (I believe) may help with that as well.  I’ve had the opportunity to see a preliminary version of it and it basically seems like a combination of an MS social network and educational resource. I hope lots of people will share on it because it will certainly provide a way for us to connect the dots from one to another even easier.

Connect the Dots Read More »

How Many Specialist does it take to Treat One MS patient?

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As I have been reading blogs written by other caregivers or MS patients, that joke that goes around “How many xxx does it take to….” comes to mind.  When Lynn was first diagnosed, I had a basic knowledge of MS and figured that he would have a neurologist to manage all his care but what we have discovered is that specialists only manage their speciality.  If there is a hint of another problem, then Specialist 1 refers to Specialist 2. Often time Specialist 1 doesn’t talk to Specialist 2 and therefore, each Specialist does his/her own thing. 
Now, I’m all for having specialists because medicine is very complicated and I whole-heartedly believe that one individual cannot know everything about everything or maybe about anything.  In fact, the more I learn about anatomy and physiology (i.e. body parts and how they work), the more I know that I don’t know nearly enough. What I don’t understand, however, is why the specialists don’t all talk to one another.  
In theory, that’s what a general practitioner (i.e., Family Medicine or primary care physician) is supposed to do but they can’t do it unless the others all provide a summary of what they are doing as well and keep them in the loop.
When you have MS you will probably need most, if not all, of the following at some point:

  • A GP or HCP – (General Practitioner or primary care doctor) to handle colds, flu, new symptoms, oversee your general well-being, etc.
  • A neurologist – The one who will handle your medications for MS and in general treat your exacerbations and keep you informed about your condition.
  • A urologist – Often the water works don’t work so at some point you might develop bladder or kidney infections or have a need to self catheterize because it’s hard to keep your bladder empty or there are embarrassing leaks.  If bladder pressure increases and causes damage to the kidneys, then a nephrologist (kidney specialist) might also be needed.
  • A psychiatrist – People with MS often have depression or difficulty adjusting to the changes in their bodies and lifestyles.  It’s good to have someone to talk to and someone to manage medications so you might also have a counselor
  • An ophthalmologist – visual changes often occur and may be one of the first symptoms experienced that lead to the diagnosis of MS.
  • A physical medicine or rehabilitation specialist – to direct your need for physical therapy, occupational therapy, control of spasticity, ordering assistive devices, etc.
  • Pulmonologist – sometimes the muscles that control the diaphragm become affected and breathing difficulties occur.
  • Hematologist- many of the MS drugs cause decreases in the production of blood cells.  A hematologist can help determine how best to assist the body in reproducing the necessary cells or providing support in other ways.
  • Speech pathologist-often needed if swallowing or speech becomes affected.

Of course, once you get an autoimmune condition; other medical conditions often develop as well leading to more specialists….

  • hypothyroidism, which is the low production of thyroid stimulating hormone leading to the need for an endocrinologist
  • bowel or other GI concerns which may require the assistance of a gastroenterologist.
  • Heart arrhythmias or high blood pressure due to medications or anemia, etc. requiring a cardiologist
  • Surgeons to implant pumps to deliver anti-spasticity medications or maybe a feeding tube or nerve block.
  • Skin irritations, abnormal growths, wounds, dry skin…all of which might be addressed by a dermatologist.

Are you getting the picture?  MS can affect any “system” in the body.  Whenever the myelin degenerates due to a lesion eroding the nerve covering…whatever that nerve supplies will cause impaired functioning in that area this is no longer getting the necessary stimulation.  So essentially though there are often well-known symptoms of MS, any organ or body part could be affected.  Any new condition could be MS related or it could be a new condition separate from MS all together. 
So the thing to keep in mind here is that the only one who really knows the entire story is the patient and the caregiver.  As Lynn’s caregiver, I keep a book of when he saw which doctors, what he was seeing them for, what they did, etc.  I keep track of all his medications and take a revised list to every appointment with every doctor.  When a new therapy is needed or a new symptom comes up, I try to remind the “specialist” about all the other issues that might be influencing the situation. 
 Therefore, you (and the patient) are the experts.  You know more about your “patient’s” body and what works and what doesn’t work than anyone else.  As Lynn started telling his doctors when he was in the hospital, “you know your specialty but I know my body so whatever you want to do, we need to decide together.”  You have a right as the patient or as the “medical decision maker” to say “no” or to suggest a different course of action.  However, it’s also important to realize that they actually do know more than you do about the speciality so don’t totally dismiss what they suggest.  Just know that you know how you react and feel and that you are an essential component to the success of any treatment plan.
 So, how many specialist does it take to treat one MS patient?  The numbers may vary but the most important specialist is you (the big YOU meaning both you and the person with MS).  If you feel you need something…ask.  If you don’t understand what they are talking about, ask them to put it in simple terms so you can understand.  Each medical profession has its own language so don’t feel dumb if you don’t know what they’re saying, chances are they can’t talk whatever your language of expertise is either.  So ask!  Get what you need, check behind them, and if you’re not satisfied, find someone else.  It’s your life and the life of the one you’re caring for… so do what you need to do.

How Many Specialist does it take to Treat One MS patient? Read More »

MS Diet

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One of the readers of my blog shared that she had heard of a diet to help people with MS.  She had a video of Terry Wahl talking about it. I was amazed as I watched the video that it was the exact diet that Lynn’s dietician has him on.  He started this diet the Monday after New Years and though there has not been dramatic improvement, he has actually been feeling better for the last couple of weeks so I’m very hopeful.
Here’s the diet for those of you who have not heard of it.
3 cups green leafy vegetables (kale, spinach, swiss chard, parsley, turnip greens, etc.)        
3 cups sulfur vegetables (brocoli, cauliflower, brussell sprouts, asparagus, leeks, mushrooms, garlic, onions, cabbage, etc.)
3 cups of bright vegetables or fruit
2 tsp of seaweed per week
grass-fed meats, wild caught fish, seafood, organ meats (grass-fed)
no diary (he uses coconut milk), no grains, no starches
The purpose of the diet is to support the growth of myelin and mitochondria both of which are necessary for nerve function.  Terry Wahl who was the speaker in the video says she went from a recliner and walking with two canes to riding horseback and bicycling in 1 year. 
Let’s keep our fingers crossed that this diet will make the difference.  It’s expensive but will certainly be worth it if it works!

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Too many changes in too short a time

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I’ve always disliked change.  I like things to be predictable and I like feeling in control.  I want to know what I’m responsible for, be able to plan my immediate future with some degree of probability, and I like to finish jobs and cross them off my list. Change doesn’t come easy for me but I eventually adapt.
This week has brought a lot of change. Ever since Lynn was originally diagnosed with MS, he has participated in a study whose purpose was to determine if taking Copaxone along with Avonex would reduce occurrences of exacerbations.  There were three groups; one got Copaxone and a placebo; one got Avonex and a placebo; and the other got both drugs.  We found out that Lynn was in the group that took only Copaxone.  Now that the study is over, he has to decide what he wants to take as a medication.  His doctor feels he did not do well on Copaxone because his condition declined rather quickly in those five years. Tough to say if it was the MS or the long hospitalizations but he certainly has a lot less function now than five years ago. 
Now he has three medication options to consider–Rebif, Betaseron  or Tysabri.  None are good choices for someone with probably progressive disease rather than relapsing/remitting so it’s a matter of which will do the least harm.  Betaseron can cause liver disease, thyroid disease, seizures, bleeding disorders, anemia and depression.  Rebif can cause liver disease, seizures, congestive heart failure, thyroid disease, and depression.  Pretty much the same as the other one but there is the risk of heart failure instead of anemia and you take it three times a week instead of every other day. Tysabri on the other hand can kill you.  It may cause a serious viral infection of the brain that leads to further disability and death. Supposedly there’s a test that will help determine who is susceptible to the viral condition but it’s no guarantee. Therefore, he’s not inclined to take that one.  Unfortunately, that’s the one I think his doctor wants him to try. I believe he thinks it might work better for him. It’s Lynn’s decision but as I write out the side effects, I’m not thrilled about any of them but I, too, lean more toward the Tysabri.  I am sure Lynn will not consider it at this time; however, so Rebif will probably be the one he chooses.
Rebif makes you feel like you have the flu for about 8 hours after you take it according to the literature.  So three days a week he’s going to feel lousy…oh, joy.  Not only that, I’m waiting to find out just how much the insurance will cover.  It costs around $30,000 per year I understand without insurance. Who has that kind of money?  I know the drug companies offer assistance but I’m expecting big dollar signs in our future.  I sure hope my insurance will cover the majority of it!
The other change I found out today was that we are no longer approved for home health visits.  We have 90 visits per year.  Lynn tried spreading them out so they would last till July when the number increases again.  Instead, because he was not using them as much, they got cut off completely.  Now I’ll have to call and try to persuade them to reinstate the number that was left.  Just one more challenge to face.  If they don’t allow us to get them back, then I guess we’ll see if he can do outpatient physical and occupational therapy.  That means three days a week driving an hour each way to therapy, paying $5 to park each day, and taking, at a minimum, three hours out of our day…actually more since there’s all the preparation time and then “re-settling” time afterwards.  I just don’t see how I’ll be able to keep up with work with all those trips. I’ll just have to find a way, I guess.
Speaking of work….I’m busier at work.  I go in only one day a week for about three hours but on that day, I get nothing done due to the travel and the fact that everyone wants to talk to me while I’m there so it takes me more hours to stay caught up.  I’m working seven days a week to keep up. If we have to start going in for therapy…well do the math.  On the other hand there is more therapy equipment there and maybe he’ll do better and get stronger faster.  We can always hope.
I admit I’m overwhelmed right now with all the change to be considered.  I know we’ll adapt and it will be become our new normal but it sure would be nice to just coast for a while.

Too many changes in too short a time Read More »

Not anemia? Guess it's MS…

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Lynn saw the hematologist this week to try to find out why his hemoglobin goes up and down.  When we got the lab work back, his hemoglobin had dropped one point which wasn’t that bad actually.  So then why does he get so cold so often? 
The good news is that the doctor ruled out anything like cancer or anemias that are related to serious long-term complicated conditions.  The bad news is that he’s not sure what may be causing it.  He believes that it’s either due to malabsorption (his dietician votes for this option) or it could be due to something interfering with production.  We found out that interferons can affect blood cell production.  Did you know that?  I didn’t. 
He’s been in a study for five years that has him taking two different medications. It’s a blind study so he doesn’t know for sure what he’s taking but the options are either avonex and a placebo, copaxone and a placebo, or both avonex and copaxone. Based on the side effects he experiences, we’re pretty sure he’s been on both avonex and copaxone. The doctor thinks that it’s possible since he’s been on the avonex for five years, that may be part of the issue.  However, he says that there is evidence to suggest that part of the issue is inflammation. 
inflammation? Well, we all know that MS has inflammation at its root.  After all what is an exacerbation but inflammation at a nerve site?  So maybe as his MS inflammation increases or decreases, his production may be affected.
The other thought is that he may have an MS lesion on his hypothalamus.  The hypothalamus regulates body temperature. If he has a lesion short-circuiting his body temperature control then this may be a long-term symptom he has to address.  Talk about being bummed out!  That was rather depressing news. We wanted something he could do something about; not something related to MS!  The hematologist said the coldness could not be related now to anemia because Lynn is no longer anemic…makes sense but then again, anemia, as least iron deficient anemia, has a treatment.  MS basically doesn’t when it gets to the secondary-progressive stage.
So now part of our “normal” life will be dealing with swings in body temperature.  He’s having a really difficult time maintaining a feeling of “normal.”   He either feels like he’s frozen to the bone…wrapped up in arm warmers, leg warmers, drinking hot tea and putting on a snuggie; or he suddenly gets over heated and is ripping off all those things looking for ice water.  The odd thing is too that if you take his temperature with a thermometer, that it doesn’t really change. His temp is almost always 97.5 or there about.
Very disappointing news. 
We did have some good news this week though—Eric, his son does NOT have MS!!  He had an MRI Jan. 24 and it was completely normal!.  We were all very relieved. Lynn has always been afraid that he might have passed the gene to Eric and that he would end up suffering because of him. It’s a relief that is not the case right now.  We know that just because he’s free of it right now doesn’t mean he will always be so but we’ll take it as good news for now. 
So all in all, last week was a typical week living with MS.  It had its good times and it’s not so good times; it brough new challenges and use of old coping tricks.  As with most of life, it’s best to take it one day at a time, keeping it flexible and adapting to the moment and most of all, finding what you can at laugh at each day.

Not anemia? Guess it's MS… Read More »

What a roller coaster!

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Just when you think things are getting better, they start rolling down hill again…
Lynn’s dietician put him on a special MS diet with the purpose of improving absorption of nutrients and more importantly, iron, since he struggles with iron deficiency.  He has to eat three cups of green leafy vegetables per day, three cups of vegetables high in sulfur (broccoli, brussel sprouts, asparagus, etc), three cups of bright-colored vegetables or fruit and the meats each meal must be grass-fed meats or seafood.  Seems like I’m feeding him all the time!  And talk about hard to find…grass-fed meats are not at most grocery stores so the saint who makes Lynn’s meals for him had to really shop around to find them.
Anyway, it doesn’t seem to be working.  Instead of feeling better, he’s much worse over the past week.  I’m sure his hemoglobin, iron, and ferritin levels must be dropping.  He has absolutely no energy, he’s cold all the time again, and just miserable.  I look into his eyes and he just looks sick and weak.  So, I’ve put in a call to get an appointment with a hematologist to find out if something is wrong with his blood. Meanwhile the dietician is working on getting tests to see if the issue is the permeability of his intestines causing him not to absorb what iron he’s taking in.  Unfortunately most of those tests are not covered by insurance so we’re waiting to see how much that will be.  Of course, we will have to do the testing because we have to find out what’s wrong. He’s miserable and when he’s miserable, so am I….Not because I’m such a sympathetic person…no I’m no saint…I’m miserable because he needs constant attention and my patience over doing the same thing over and over is limited.   Like now.  I have to go cath him and I just did that less than an hour ago, and the hour before that…!  Ugh…
I was hoping now that I need to try to go into work one day a week that he would be well enough to make this process easy but when he feels bad and needs so much attention, it’s more difficult.  It went well this week but I was only gone from 7:30 until 11:30.  His mom stayed with him.  Next week my friend will stay with him and I’ll probably be gone a little longer.  He’s been a bit depressed about me going back.  He feels that I’ll be so glad to be away that I’ll want to go in more and more and to be honest, I expect he’s right.  It was actually very nice to be among the working again and to not constantly be interrupted to do something totally non-related to what I was trying to accomplish. 
As tired as I expect I’ll be on those days, I’m looking forward to it although I admit I feel guilty about that.  I know how much he wants me to be here and I know I can probably give him better care than anyone else but I really need a break and some time to myself.  He reminds me of my children and how they would cling when I left them at daycare when they were young. I always felt guilty to walk away when they were clinging or crying–that is until I got to my car.  When I drove away, it was a relief not to have the pressure of the crying and clinging and I admit, that’s how I feel now–relieved to be away.
I hope this works out–my going back to work–but I see trouble on the horizon.  If he’s got a blood disorder then it may be a long-term problem that makes him more difficult to leave.  If it’s malabsorption; hopefully medication will fix that.  I don’t know what it is but it’s something and I sure hope they figure it out soon.  It’s time to move on to some healthy days….
 

What a roller coaster! Read More »

Ferritin Deficiency

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When Lynn went to the doctor last week, several blood tests were done to find out why he is feeling so tired and run down.  We got the results yesterday and was very surprised to find out that his hemoglobin was greatly improved (now 14) as were his other lab values.  For the most part, everything was within range of what it could be and still be normal.  So why does he feel so awful? I think he has ferritin deficiency.
What’s that you say? Ferritin is a protein produced by the body to store iron. When there is insufficient iron in the blood, the body uses the iron stored in ferritin. Once the iron levels in the body improve, ferritin will again begin to store iron but there needs to be a surplus of iron before that happens.  Lynn’s blood work shows that his iron level is getting much better (his is 66 and the range is 30-165) which is why his hemoglobin has also improved.  However, his ferritin level is only 31 (normal is 30-330).  At this level he has symptoms of ferritin deficiency.
With low ferritin, the person gets tired easily and is unable to tolerate even moderate levels of physical activity. They have almost no stamina and will experience sudden loss of energy even with routine tasks. Their skin is often pale and dry and it’s common for them to have thyroid disorders.  The thyroid gland is unable to produce hormones when ferritin is low.  That may explain way Lynn now has hypothyroidism as well!
What’s the treatment?  Taking iron supplements and eating foods high in iron.  He has been on extra iron since September.  His first lab in September showed his ferritin at 30; in October it was 47, and now it’s back to 31 so he’s not making good progress yet.  We haven’t heard yet if his iron intake will need to be increased even further.
While I’m glad to know what’s wrong with him and relieved that it’s not something like liver failure or cancer, it’s also concerning to not know why this is happening.  He’s on a diet already high in red meat, eggs, greens–all things high in iron; so why is this happening? 
What I can tell you is that it’s exhausting for me.  He gets up in the morning and by the time he has eaten breakfast, he’s done in.  After that, anything he needs to have done, I do. He’s also suffering from being chilled to the bone; one of the side-effects of the condition.  He puts on blankets and we turn up the heat and he’s still cold so he drinks hot tea; and then he is too hot and he drinks a bottle of cold water; and then he’s too cold so he takes more tea; and on and on.  Today, since midnight last night I have catheterized him 17 times!  That’s almost every hour.  The only time it has not been every hour was when he was sleeping. 
Between being called back to cath him every 45-60 minutes, I’m making tea or getting more water for him, handing him things, helping to move his arm that won’t move, and trying to help him get comfortable. I have to admit, I’m lost my patience a few times today because I’ve been called away from what I was doing every few minutes.  But I also know he’s miserable and if he could control his needs, he would. Just one more thing to add to our list of medical challenges.
Did MS have anything to do with this?  Who knows?  A year ago he was in the hospital for not eating or drinking.  Maybe he lost all his stores then and with the other four hospitalizations, it never had a chance to improve.  Plus no one paid any attention to the anemia until this past fall. He was so sick with other things, the focus was on those and not on this so now that the other things are better; it’s ferritin’s turn now.
The blessing is that this is something that can be treated.  The curse is that it takes months to see an improvement.  With all things in life, there is a balance.
I don’t suppose anyone would like a house guest for the next few months???
 If you want more information on ferritin deficiency, I found this website to be informative.   http://www.buzzle.com/articles/ferritin-deficiency-symptoms.html

Ferritin Deficiency Read More »

MS or something else?

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Every time Lynn goes through a spell of feeling bad, I wonder, “Is this MS or something else?”  MS is so sneaky.  It affects so many components of the body and mimics so many other things that it’s not always easy to tell.
Like now.  Something is wrong with Lynn. He associates it with when he got his flu shot at the end of October and it’s true that taking a vaccine often does trigger a reaction in MS patients.  As their body attempts to make antibodies against whatever is being introduced, the autoimmune response is often triggered and the body feels the effects of the war.  But it usually doesn’t last this long….
If you recall,  a few blogs back I mentioned his hemoglobin report came back low.  I have been hoping that the result was a mistake. I’m still hoping that but over the last week, he’s getting more and more fatigued.  By 3-4 p.m. he’s exhausted and feeling really rotten.  The only thing that has been giving him any relief is a hot shower so he’s had a hot shower every night this week. I talked to his doctor today about re-ordering the lab work and maybe adding a few other tests.  She wants him to come in first so she can assess him herself.
I understand her perspective but we still don’t have a title or tags for our van so I can’t take him to the doctor yet.  Yes, I could put him in my car but he’s so difficult to get in and out, I don’t want to do that if I can wait.  So, he has an appointment for next Friday.  I’m hoping the title we’re waiting to get from the former owner’s bank will come in this week and maybe I can get the appointment moved up.  I know Lynn is really feeling bad and that he is also concerned about what’s going on because he’s anxious to go to the doctor too and he NEVER wants to voluntarily go to the doctor.
So we wait to find out what’s next.  The doctor mentioned maybe sending him to a hematologist (blood doctor) for an assessment.  Might as well, we haven’t seen one of those yet.  He has a pulmonologist, a neurologist, a cardiologist, endocrinologist, urologist, physiologists, and dermatologist.  Pretty soon he will have a specialist for every body part.  What his primary care doctor (not an -ologist but an internist) thinks is that something is affecting the production of red blood cells in his bone marrow.  That’s rather worrisome for me because having a medical background myself, I think first of cancer.  Sure hope there’s no chemotherapy on the horizon.  His PCP thinks maybe it’s one of his medications causing a problem so if she repeats the lab work and there is still no improvement in the hemoglobin, I guess we try that next.  Let’s hope it will be a simple fix.
So what do we hope for?  If it’s MS pain and discomfort, chances are there is no treatment.  If it’s anemia due to bone marrow being impacted by something, then maybe there is a treatment.  Hopefully he just needs iron shots or something.  So if you’re the praying kind, pray we get that title in tomorrow so I can get tags on the van and be able to take him to the doctor to find out what’s going on.  Until we can get there, we are in a holding pattern and that’s pretty stressful.  Then pray the new lab work will reveal that nothing is wrong and that maybe there is something he can take to feel better. 
Thanks.  We appreciate the prayers and support.

MS or something else? Read More »

Lord, please…

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Over the past week, my concern has grown.  I walk into the room and see him sitting there.  His eyes are shaded in pain–not severe pain–more of an aching discomfort due to the broken skin on his coccyx. We’ve tried several types of patches to protect the area but one of them slide and broke the skin.  Then it happened again and more skin was torn.  Now he has an area that’s draining and sore on a place he has to sit all the time.  He can’t be comfortable in bed.  He has to sit up and peddle to relieve the stiffness.  He tries to lie in bed but he just can’t tolerate that for very long. Please don’t let this be the beginning of a difficult to heal bedsore (or in this case, seat sore).
Then there is that look of illness.  He feels miserable–you can see it in his eyes.  He tries to crack a joke but the sparkle doesn’t reach his eyes.  In fact his eyes look sunken and blood-shot.  Blood-shot from the terrible sinus congestion he has which makes it hard to breathe all the time. He has chronic sinusitis and uses 1/3 strength nose spray all the time to combat it but he has to have it at least ever hour.  Imagine how stuffy you feel with a cold and then imagine being like that most of the time.  It’s so miserable. Lord God, help him to breathe easier.
But that’s not what’s behind the look. He feels soooo bad. For months he was on a detox of sorts to try to heal “leaky gut syndrome” and we attributed his feeling bad to that.  Well he’s off the detox now.  Could this “bad” feeling be his reaction to taking the flu shot last week?  If so, why is it taking so long to get better?  Or is this just MS again, rearing its ugly head and making his life miserable?  Where is his quality of life if this is what he has to look forward to?  He tries so hard.  He eats well, exercises, tries to keep a positive outlook and stay active, but it’s so hard to remain hopeful like this.  He’s sick and tired of being sick and tired.  Lord, please show him mercy.
Then there’s the lab work.  I called to check on some lab work he had done two weeks ago.  His hemoglobin was 10.3.  In September it was 12.3!  Why did it drop?  I am hoping that the person who read it to me read an old report.  I’ve sent an email to his PCP to check the lab work since she didn’t order it so we can find out.  If it’s accurate, and I don’t think it is, then something else is really wrong.  I was convinced yesterday it was a mistake but the more I think of it, the more I realize he’s feeling worse and more tired.  His leg is spasming again too and it had stopped, or just about had, when his hemoglobin was up.  Lord, please don’t let that lab result be right because that means another specialist.  He has enough doctors.
He entered the hospital for the first time in his life a year ago this Sunday. During that admission, he was in and out of the ICU four times before he went home.  He’s been too sick the last two years to participate in Christmas and our goal is that he will be able to enjoy Christimas this year AND he will be able to remember it.  Please, Lord, let that come true. 
MS is a strange condition.  I know people whom you would never suspect have MS.  And then I know some like Lynn who seem to have all the symptoms.  I don’t know why it affects some worse than others but I do know it’s disappointing that so little research is being done to look at why it progresses faster in some than others.  I also am angry that there is no treatment for the progressive stages.  It’s like once that point is reached, they are written off.  At least that’s how it seems to me.
He’s calling me again to get him up.  He was able to stay in bed this time about 50 minutes.  I expect he will be up all night now.  Pray he feels better tomorrow.

Lord, please… Read More »

Please take the flu shot

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We made arrangements for our home health nurse to give Lynn the flu shottoday.  I expect he will feel pretty rough tomorrow and maybe Sunday too because anytime he gets a vaccine or a change in medications or has to adjust to just about anything different, it knocks the wind out of him. 

It used to be that I took the flu vaccine for my job and because I hate getting sick.  Now I take it for Lynn.  Whenever I go out, I’m paranoid if someone sneezes around me or I over hear someone saying they are sick.  When you’re a well person, getting sick is an inconvenience.  Sure, we all hate the aches and pains and don’t even mention throwing up!  But when you’re disabled a simple cold can have devastating effects.  Although we don’t want to hurt anyone’s feelings, we ask that no one come by who has the sniffles or any signs of illness because he just can’t fight anything off.

So, I hope everyone who can will take a flu shot this year; if not for yourself then for those you walk by who could end up in the hospital if they caught your illness.  And healthcare workers….please, please, please take the shot and don’t come to work if you’re sick.  I know how important staffing is but having been on the other side of the bed as the family member worried about their loved one, I had rather do with a little less attention than to have you come into his room and sneeze from a cold or other illness.
Thanks to everyone who takes prevention seriously.  Those who love someone with a serious health condition appreciate you.

Please take the flu shot Read More »

Please participate in this survey related to Caregiver Needs

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I received this email request from the Southeastern Institute of Research asking me to post a link to a survey they are conducting along with the National MS Society  and the National Alliance for Caregiving related to the needs of caregivers.  The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers.  
The survey takes approximately 20 minutes to complete and is completely anonymous and confidential. No one will ever ask for your name or contact information.  Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.
 I hope you will consider participating.  The survey closed on  Friday, October 21. For the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.
 Here is the link for you to copy and paste or you can click on it at the right. 
www.sirresearch.com/MScaregiver
 I’ve taken the survey and it asks very relevant questions.  I encourage each of you to take the time to participate.

Please participate in this survey related to Caregiver Needs Read More »

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

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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 »

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 »

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 »

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.

We have MS 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.

Hayek Ventilator Read More »