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Skin Care

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With Relapsing-Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point, and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS, so he was seeing his doctor every three months and getting the full-court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far, and his strength was less. Response times to questions got worse, and overall, he seemed to feel worse most of the time. That’s when his doctor decided his MS had changed from RRMS to SPMS, and we realized we needed to look into making changes in our lives.


We were not fortunate enough to have a comprehensive approach by his doctor to managing his MS. His doctor is a neurologist, and he does not offer guidance on his care or alternate treatment measures; just on disease treatment. However, when I would bring something up, he would make referrals to other resources. His physical medicine/rehabilitation doctor has probably been the most helpful. He arranged for Lynn to be measured for a power chair and he’s talked to him more about dealing with his other losses and some measures worth considering in either preventing further decline or improving overall health.


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 https://multiplesclerosis.net/caregiver/helpful-resources/

Struggles with Skin Care

I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had.
With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent.
continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

The Importance of Skin Care

Of all the caregiving responsibilities I do on a daily basis, the one I think that is most important is inspecting and caring for Lynn’s skin.  For most people, if they get a cut or a scratch or other skin irritation, it’s no big deal.  They get a little Neosporin ointment, slap a Band-Aid on it and go about their usual routine.  For someone who spends 20 out of 24 hours sitting in a chair, when I examine his buttock and find a skin tear, it’s definitely an “oh, no!” moment in my life.
Did you know that the skin is the largest organ in the body?  It has many purposes; protects us from nasties crawling into our body, warns of danger, regulates temperature, manages waste, and other things.  For skin to be healthy, diet, hydration, hygiene, and circulation are essential. If any of these are out of balance, the skin is not as able to defend itself.  With someone who has MS, and who spends a great deal of time in one position, Lynn’s greatest risk to skin breakdown is circulatory.  As gravity tends to pool blood into the lowest regions of his body, his greatest risk areas are his buttock and feet.  His buttock because the majority of his body weight is compressing the blood flow to his buttock as he sits and his fee because they are further away from the heart and his muscles in his legs are severely compromised. He uses an electronic peddler to keep his legs moving and circulation flowing better but his feet are secured to peddles with bandages so they will stay in place resulting in potential areas of friction.
His buttock is even more at risk. He sits on an air cushion all day which helps but that doesn’t totally remove the fact that this 195 pound man is putting the majority of that weight onto to a tail bone that has almost no fat on it anymore.  There is very little fat cushion remaining between the bone and skin so as moisture builds from body heat causing sweating,  and as his legs slightly move with the peddling motion or occasional shifting of his weight, friction occurs. If the skin is in good shape, it can withstand the movement and all is well.  If for any reason, his skin is inflamed due to too much pressure in an area, irritation from toileting, or the skin has become mottled then it’s more prone to sloughing or tearing.
If you see irritation or redness that doesn’t get better from just changing positions, that’s a signal to spring into action. Determine what’s causing the problem: too much moisture, not enough, resting on something too hard for too long, diet or hydration needs attention, etc.  If you don’t fix what caused the problem, then the condition will get worse or if you get it better, it will return.
To prevent issues with Lynn’s feet and legs, I use a lot of lotion on dry skin to keep cracks from developing.  I use pads like band aids or the pads you can find in foot care aisles for corns or calluses. I keep his nails cut short enough that the shoes won’t push the toes together and cause a scratch. Since his feet are usually strapped into the peddles of the peddler, I put pads on both heals, on the outer side of both feet just below the little toe, and a waterproof extra-large band aid over the top of his foot.  So far, he has not had any significant foot wounds.
His buttock is another matter.  I’ve been fortunate that I have always been able to get wounds there to heal but it takes a lot of diligence to do that and if I find I can’t see healing (new pink skin rather than enlarging of the area) on my own in two-three days, then I call the doctor.  My first action is to determine if I need more or less moisture to the area.  It’s nearly always less for that area.  Obviously bandaging is more difficult as most bandages are not designed to fit around the buttock area but to work on areas that are straight.  There is also the issue of being able to keep the bandage from getting soiled.  If it does, it needs to be changed so that the wound underneath doesn’t get contaminated. If you are therefore, going to change the bandage often, it’s important to use a non-stick covering.  If you use dry gauze, you’ll need ointment to keep it from sticking so you would not be able to eliminate moisture.  I like to use Telfa or other non-stick gauze pads and secure it with paper tape.  These products keep the new skin from tearing open when the bandage is removed.  If the wound needs something to dry it out and help it heal, I use Silveabsorb gel which usually helps.
If my efforts are not working, I call the doctor for an order.  If you can take a picture of the wound to send that will often help the doctor assess the situation without requiring an office visit, but you need to do a thorough job of telling the doctor what you have.
Here are some pointers on describing the wound:
continue reading at: http://multiplesclerosis.net/living-with-ms/importance-skin-care/

Oh, no. Is that a skin tear?

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.