On TV, you always hear the Docs asking for their patient’s history so they can figure out what’s medically wrong with them. My addiction for medical dramas, ER and House, M.D., has influenced me to engage in a little roleplaying as I give my medical history to offer a better understanding of the symptoms of FSHD. (The following is a combined summary taken from my own doctor and therapy sessions, personal notes, and web definitions.)
Sex? Yes please! (Sorry, couldn’t resist.) ahem, Male.
Weight? 120 lbs.
Allergic to any meds? No.
Taking any meds? Tylenol or Ibuprofen for occasional aches.
Patient is experiencing extreme muscle loss in multiple regions, including some respiratory. Ancient biopsy shows Facioscapulohumeral dystrophy. Diagnosed in 1992, able to live and function normally until early 2009. Due to severe progression, patient has stopped working and is on disability status.
Face: Despite a winning personality, patient has difficulty smiling. Eyelids do not close all the way unless he forces them shut. No problems sleeping though.
Neck: Patient says tilting head back is fine, but tilting back to front is a little hard. Weakened neck muscles.
Back: Patient’s back shows curving of the lower spine, resulting in slight protrusion of front abdominal. Patient has to make small balanced adjustments in his walking due to this curvature. There is also slight scapular winging.
Front: Physically, only loss of a couple abdominal muscles.
Respiratory: Patient has undergone pulmonary tests which showed a decline in functions, but nothing major to support mechanical assistance. Now has difficulty speaking for long periods. Not the case before. When fatigued, hard to enunciate, but speech therapy not necessary. Patient has concerns about chest congestion if he develops pneumonia or the flu. Has a harder time clearing his throat if there is blockage, also sneezing is not as forceful as it used to be.
Arms: Patient has severely lost strength in upper muscle regions on both arms. Lower arms have more strength. Patient also reports stiffness and occasional aches. Cannot raise arms above head, nor is able to hold arms straight out.
Hands: Right hand (dominant) has weakened more than the left. Strains when making a fist and it is hard to grasp objects. Also experiencing arthritis in right fingers. Left hand seems to still be fully functional. Patient has readjusted well using his left hand for daily functions. However, upper arm weakness has made it difficult to lift or raise things. Still, adjustments have been made. Patient does show hostility though complaining of not being able to eat and drink like he used to, due to difficulty holding utensils or heavy cups for long periods. Prefers more finger foods now. (Note: culinary topics…very touchy subject.)
Legs: Again, patient has suffered major loss of the upper muscles as opposed to the lower. But oddly, the loss of muscles are not at all symmetrical. This holds true throughout the body. Left sides are a little stronger than the right. The patient noticed and made the adjustments to compensate. Patient can still bend and raise the left leg, but no longer the right. Both calves show normal strength which is probably why he can stand and walk with assistance. However, he cannot stand from a seated position nor can he lift himself up from a ground level.
Feet: Same result as the rest of the body. Left foot stronger than the right. Angling up and down strength still decent, as well as wiggling of the toes. Right foot: angling down is strong, but upwards is impossible. Toe movement is weak but possible.
There is no cure for FSHD. Though involuntary muscles are rarely at risk. Digestive, reproductive, cardiac, nervous system functions are not usually affected by this form of MD. The only treatment or course of action is making the proper adjustments at the patient’s home to adjust to his progressive condition. Wheelchair needs, walking aides, etc. Lack of strength and mobility to exercise means that the patient must maintain a proper diet to keep at his current weight. The heavier you are, the harder it is for others to help. Patient reports eating more vegetables, soy, and fruits to maintain. Also adds doses of Metamucil for added fiber. There are no muscle supplements that have been proven to work. A multivitamin is sufficient. Mucinex is suggested in times of chest colds and mucus congestion. Massage therapy and stretching has helped. Patient reports feeling more loose and able to function better for short periods after sessions. Joint tightness and curving can form if there is lack of movement. Make a concerted effort to stretch and flex to avoid chronic stiffness. Also recommended to take extended breaks if typing, exercising, or doing any form of strenuous activities.
Thank you Scott for letting me post this on my blog! To read more about Scott visit his blog.http://scottmd.wordpress.com/2009/08/29/patient-history/