When I was approached to see Marty, an Age Song Community resident with Huntington’s Disease [HD], I wasn’t sure it would work because of the spontaneous movement that is associated with the disease.
Huntington’s disease is a disorder passed down through families in which nerve cells in certain parts of the brain waste away, or degenerate.
The most common form of HD is adult-onset Huntington’s Disease. Persons with this form of HD usually develop symptoms in their mid 30s and 40s which may include behavior changes including hallucinations, irritability, moodiness, paranoia, and psychosis. Abnormal and unusual movements [chorea] include facial grimaces, head turning to shift eye position, quick, sudden, sometimes wild jerking movements of the arms, legs, face, and other body parts, slow, uncontrolled movements, and an unsteady gait.
Dementia that slowly gets worse, including disorientation or confusion, loss of judgment, loss of memory, personality changes, and speech changes may also be associated with HD.
Additional symptoms include, anxiety, stress, and tension, difficulty swallowing and speech impairment.
Indeed, providing massage for Marty is a challenge .The spontaneous movement creates positioning challenges because the slightest movement of a limb can create a triggering effect throughout the body. It is also very difficult for me to understand his speech and his facial expressions may have nothing to do with the meaning of the conversation. I have to stay totally focused to really understand the emotional under tone of our sessions and to separate the symptom ology from deliberate animation.
In the 3 months that Marty and I have worked together however, the positive outcomes outweigh the challenges. Symptoms that include labored breathing, facial grimacing and body jerks relax as much as 50% during a 45 minute session. Sometimes a very deep calm appears and eases all symptoms for minutes at a time.
Our sessions are casual. Marty sits in a comfortable chair and stretches his legs over the side of the bed.
Sitting on a stool at the side of the chair, I prop his arms with pillows and work with his arms, hands, chest, neck and head. I work very slowly as to give the nervous system an alternative movement to follow. Ear massage has the most relaxing effect of all areas of the body. It appears to completely calm the nervous system.
Marty’s vulnerability and his willingness to be vulnerable is a precious gift. In “Gems Of Wisdom,” a book by the residents at Age Song, Marty writes,”With HD there is a lot of shame about the body and mind. They become the enemy, are misunderstood and disguise who I really am. People think I am drunk and laugh at me. My mother, brother and I became the butt of many cruel jokes. I now try to experience love and joy instead of despair.”
Communicating with the psychologist underneath the symptoms of HD is also a challenge that I am deeply grateful for. Marty’s willingness to be exactly who he is, his willingness to be loved, and his willingness to be fully present is a sacred teaching. My professional boundaries are challenged. I am watching myself become involved. The heart is open.
I will keep you updated on our relationship.
I have been communicating with Ginger Peer, a practitioner in Virginia who is also working with someone with HD. I have posted her last e mail under comments. Please share any experience you might have as well.
Irene Smith www.everflowing.org