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  Helpful Hints

Written by and for people with HNPP

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If you have found some thing or some way to make living with HNPP easier and would like to share it, please submit to Maureen Horton. Please include your first name and the state and Country in which you live.

Please Note: In order to comply with the requirements to make this a medical web site, I am to show proof , by way of medical studies, that a particular item works. Medical science is not yet in a position to study all the little things one can do to make life with HNPP easier. Much work is yet to be done in studying the use of viatmins and alternative therpaies in the populatio in general. Medical studies will be included as they become available.

The helpful hints suggested here have been sent in by individuals with HNPP. They are simply things that seem to have worked for an individual. What may work for one individual, may not work for another. Should you have any questions about using a particular 'helpful hint' yourself, please check with your health care provider before beginning. Always use common sense.

 

IN General

The more I accept this problem, the more ways there are to deal with episodes. Most are common sense in my opinion. Scott,Voorhees, NJ, USA

 

Has any one tried to measure and plot a hand or leg drop? It gives some interesting results. When I lost 50% of the movement and power of my right leg I would lay on my back and raise the leg off the floor and get my wife to measure the distance I could raise it. This was then plotted on a graph on daily basis. It gave two pieces of information, 1) it told me if the condition was getting worse 2) it told me when the nerve started to heal (the movement increased).

The second thing I have done is to plot the numbness on the surface of the skin by pricking gentle the skin with a pin you can feel if an area is numb or not. You then use a pen to draw the areas on the skin. If checked daily you can tell the progress of the nerve healing itself by the movement of the pen lines. This ones good for a hand or foot drop.

Doing the above at least gives you the feeling you are doing something to combat the disease and it also gives you the opportunity to "see" the disease rather than it being lock up inside you without you being able to do anything about it. Malcolm, U.K.

 

 

 

Alternative or Complimentary Therapies or Things that FEEL Good

I notice most of my problems seem to be worst when I awake in the morning, indicating sleeping wrong. If I take a nice warm bath with epson salts or just warm water alone it seems to dramatically help me for a while anyway. It seems as though while I'm in the nice hot bath, I can actually feel the blood flow increase which I believe helps the electrical signals to the nerves improve. Robert, Pennsylvania, USA

I went for an alternative treatment called craniosachrial therapy. I also saw a lady who does Reikii work which is working with your energy fields. They work as a team. It is like massage therapy, counselling, and the laying on of hands as well as healing touch all rolled up into one session.They worked on me for two hours. I was amazed how I felt after. I felt lighter....less tension and pain, I slept well without sleeping pills or narcotic pain killers . This is by no means a sudden cure, I am going for another session.It is however a start. Karen, BC, Canada

Hot baths: When all else fails, it helps a little...doesn't make all the numbness go away, but stimulates body for a fresh start. Scott,Voorhees, NJ, USA

Massages: If you are lucky (like me), have girlfriend, boyfriend, wife, husband, loved one massage areas of numbness, pain before sleeping. I always feel at least a little bit better in the morning after a day of an episode if this is done. Use rubbing alcohol if possible. Scott,Voorhees, NJ, USA

 

Beds/Sleeping

I just lie on my side and put my arms in front of me, not touching each other either. Don't know how your husband would feel about this, but you might consider having separate beds. Then yours could be super soft and his could be however he likes it. If you shop around you can get different grades of foamies, from soft to hard. The way my bed is set up has worked well for me for many years, it's a queen size water bed with a one inch foamy on top and then sheets and blankets. The waterbed provides the large scale movement for the big bones like the hips and shoulders and the foamy provides small scale relief for smaller bones like the knees and feet and elbows and hands as well as insulating my body from the temperature of the water in the bed. Dan, Winnipeg Canada

Socks! heavy and loose...no nylon or clingy socks...loose cotton socks or even loose fuzzy slippers. Big problem in winter months when awakening with cold, numb feet. Could not feel my feet hitting the floor to go to the bathroom, and had twisted my ankles several times going to the bathroom. Scott,Voorhees, NJ, USA

 

Carrying things

I bought a yard wagon. When we have alot of groceries, I load everything in the wagon and bring it to the patio door,

Groceries or shopping bags: Slip the bag as far up the forearm as possible. My fingers are the first to go numb (for days!) if I carry a typical style shopping bag, or plastic grocery bag with my fingers within seconds. I find I can carry a couple on my forearms without any discomfort, and actually have my hands free. Scott,Voorhees, NJ, USA

 

Cold Extremities

I have started wearing loose woolen socks to bed and they do help, at least I don't wake up in the night with frozen feet. and I fall asleep much faster with warm feet, I heat up the socks before putting them on.

 

Computers

I like the voice dictation software to minimize typing. And the Voice mail programs are nice also. Robrt, Pennsylvania, USA

 

Driving

Keep both hands on the steering wheel as much as possible (the way we are taught to drive anyway!). When driving with one hand, I tend to rest my left elbow on the window ledge or driver side door. This zaps my elbow nerve and then my left side of my hand can go numb for days. Scott,Voorhees, NJ, USA

 

Entertainment (Movies, etc)

Keep both feet on the floor! Try to not cross legs, or if I do...I keep rotating the leg cross every 5 minutes.Scott,Voorhees, NJ, USA

 

Pacing Activity

And last but not least by any means, is the importance of individual's pacing themselves. Robert, Pennsylvania, USA

I'm retired, but I use a weekly planner to help me figure out how to pace all that I want to get done in a week. By using a WEEKLY plan book I can see how to spread out all my activities over the week. I can plan ahead for when I will rest, run errands, make phone calls etc. I seem to make every other day a lighter day activity wise (not lots of errands) and that helps me avoid doing things for several days in a row and then collapsing.

 

Vitamins and Herbal Supplements

Also, I take a B complex (B1, B2, B3, B12) but I have heard to STAY AWAY from B6. Also, I take Saint John's Wort which most people take as a mood enhancer but I read up on it and it claims to be a nerve healing agent also. Also, I am looking into Silica Hydride (and other anti-oxidents). It claims to be helpful for degenerative diseases. Robert, Pennsylvania, USA

Just wanted to let you know that I tried Coenzyme Q10 for 3 months and found no noticeable benefit, and now that I am off it for a week, no noticeable change either good or bad.  So I will stop using it.  Other people may have different results. Dan, Ontario

I too took CoQ10, but never noticed a difference. It is so expensive that I just stopped taking it. I do take evening primrose oil and vitamin E which are both supposed to be very good for myelin health. Karen, BC

Last Updated: 7/2002

 

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