zondag 25 november 2012

Sport en HNPP

Hereditary neuropathy with liability to pressure palsies, or HNPP, is a genetic disorder associated with hypersensitivity of nerves to stretching and pressure. Ordinary activities, such as sitting with legs crossed, can be painful and disabling. To prevent nerve injury, it is important to stay in good physical condition. Exercise programs should emphasize good posture, be low-impact and not require static position. Examples include water exercises and tai chi. Both these practices are gentle, yet stretch and strengthen the body.
HNPP increases susceptibility to nerve injury from any type of pressure, stretching or repetitive use. Symptoms include recurrent episodes of tingling, numbness, muscle weakness and atrophy, lasting anywhere from a few minutes to several months. Recovery may be complete at first, but as the disease progresses, permanent nerve damage may result. Nerves most commonly affected are those most susceptible to stretch and repetitive use: the median, ulnar and radial nerves in the arms and the peroneal nerve in the legs.
Principles of Exercise with HNPP
Maintaining a regimen that provides strength and flexibility is important because a strong and flexible body helps to increase resistance to injury. However, finding an exercise regimen that will not exacerbate symptoms is difficult. Examples of activities which may cause problems are kneeling, sitting crossed-legged or leaning on elbows. Remaining in one position for too long may also be harmful.
Due to the stress exercise may put on your body, it may be beneficial to receive help from a personal trainer to ensure good biomechanics and proper alignment. You must pace yourself to avoid fatigue and over-strain. Limiting excessive force and repetitive motion is very important, so running and lifting heavy weights may aggravate your symptoms. Even exercises such as yoga, which are typically considered gentle, may be contraindicated due to extreme positions and remaining in one posture for too long.
Exercises that focus on proper posture and alignment with slow and controlled motion are ideal. Examples include water exercises and tai chi. They are both gentle and increase health by providing strength, flexibility and relaxation.
Water Exercises
Water exercises are gentle and low-impact and should not place excessive strain on muscles, joints and nerves. Resistance from the water helps to support joints and strengthen muscles. If the water is warm, circulation is increased and muscle relaxation will be greater. When muscles are relaxed, pressure on the nerves is decreased.
Tai Chi
Tai chi is a low-impact form of martial arts with slow and fluid motion. It focuses on building energy while relaxing the body and mind. It improves muscles strength, flexibility, coordination and balance. Joints are loose and limber. Movement is not forced and relaxation is emphasized. It is easy to adapt to for people with illnesses or disabilities.

Read more: http://www.livestrong.com/article/552037-how-to-exercise-if-you-have-hnpp/#ixzz2SAHG2psU

zaterdag 24 november 2012

Verkeerde pillen ...

Jaren kreeg ik "chloroquine" te slikken :

het goeie geneesmiddel uit de kinineplant !

Toen ontdekt werd dat ik HNPP had, bleek dit een "risico"-medicijn te zijn ....

vrijdag 23 november 2012


Heel wat medicijnen blijken niet zo goed voor mensen met CMT.

CMT en HNPP zijn toch wel verwant met elkaar, dus blijft het toch wel uitkijken  !!!

De lijst kan je terugvinden op de Charcot-Marie-Toothwebsite voor Vlaandern



vrijdag 2 november 2012

Welke zenuwen worden aangetast ?

Erfelijke "druk" "neuro"pathie is  sensor-motorisch :

  • dit betekent dat de zenuwen en spieren worden aangetast door "druk" en "aanraking"
  • het gaat over de "zenuwen" die zich bevinden aan de uiteinden van de perifere zenuwstelsel : vooral armen, handen, benen, voeten worden aangetast
  • ook aantasting van het zicht wordt bij een aantal getroffen mensen teruggevonden
  • het myeline van de zenuw wordt aangetast. Myeline dat de zenuw beschermt, maar dat ook een sterkere, snellere geleiding geeft van de impulsen
  • bij druk wordt de geleiding vertraagd of helemaal geblokkeerd
  • na een blessure wordt de hergroei van  myeline geremd of is het compleet defect