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Home-HD Symptoms

Bed/Pressure Sores
Don't Forget-Quick Reminders
Bed/Pressure Sores
This is a very painful topic for me as pressure sores was the very worst thing I had to deal with in HD.  Even with the best of care and treat-ment, they can become horrendous for someone who is bedridden and not getting proper nutrition.   Anyone's body will eventually breakdown if intervention and action isn't immediately taken.   Even then, I was told, sometimes the best they can do is to keep the wound from further breaking down.

If your loved one's skin is starting to breakdown, please demand that their primary care physician or Hospice get a wound care specialist involved right away!  And don't let them get away with just sending someone just once!!  Nurses are good but they are not up to date on the current treatment for pressure ulcers.  It wasn't until I practically had a nervous breakdown, and someone from the list suggested a wound care specialist, that I finally got hospice to have our doctor recommend one.
Be there when the specialist comes.  They will examine the wounds and give the nurses instructions, indicating when the wound should be relooked, how often, etc.  When this was said to us I said "so, you'll be back March xx right?"  They all looked at each other and the specialist said she was only approved for one visit.  I then asked "why, because Kelly has a terminal illness?  If it were any other patient would you be involved in their care?" and she answered yes.  I then told our hospice to get the doctor's to approve her coming on a regular basis, based on suggestions on what was considered "normal" intervention or I wanted Kelly hospitalized in a wound care facility where she would get the treatment she needed.   The wound care nurse was approved.  You have got to INSIST on them being approved to continue monitoring the wound.

Since Kelly died there are some new wound care products that have hit the industry. This will probably be one of the most critical care things you can do for anyone in late stage Huntington's Disease besides nutrition.  Please INSIST on the best wound care they have available.

Bed Sores
"What are bed sores and
can I do anything to prevent them?"
When you are very sick, you are prone to have skin breakdown wherever the weight of your body presses into the bed. You are at greatest risk if you move very little or you are in bed or in a chair for a long time, especially if you also have been losing weight. Ordinary pressure on the skin as you sit or move across sheets may be enough to tear or breakdown your skin. It is worth a great deal of effort to keep skin well-protected; skin breakdown is uncomfortable, a major indignity, and costly.

Protecting Your Skin

Change position at least every two hours. If you are in bed and comfortable in most positions, it is good to lie on one side, then your back, then the other side. Have a skilled nurse show your family members how to help you shift positions comfortably.

Use pillows to protect the common pressure points, which are under the heels and elbows and between the knees.
Apply gentle massage with moisturizing lotion or cream to the back, arms, ears, hands, legs, and feet.

If you are at great risk for skin breakdown, you may want to get a special "flotation" bed, which can be rented for home use.

If you or your family notices reddened or broken skin on pressure points, call your doctor or nurse immediately. You may need special medications, dressings, or bed accessories (such as soft pads or heel protectors) to provide added skin protection
(NOTE:  The skin care specialists advised us that the use of pillows or like devices are good before any skin breakdown HOWEVER once the skin has started to break down these can cause further damage as the pillow itself can apply pressure from the weight of the body part you are trying to protect/Jean.)