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Walking difficulty and imbalance are two of the predominant features in
HD. This is caused by both the presence of involuntary movements and the
absence of ability to perform voluntary movements. In general, exercise
program is found to be highly beneficial for a person with Huntington
diseases. The main goal of the exercise interventions is fall
prevention/reduction and improvement of cardiovascular efficiency thus
achieving a better quality of life.
The falls prevention exercise program contains Range of motion exercise and
stretching to maintain joint integrity and prevent contractures. Its better
the exercise is performed by the patient themselves than the caregiver passively
administer a range of motion and stretching exercises. In severe cases, splinting
to keep the joint in optimal position is advised.
Other than improving flexibility and strength, the external causes like clustered
living room with furniture and obstructed walkway with telephone cable, poorly
lighted room, slippery surface etc. needs to be taken care to ensure prevention
of falls. Also, to keep a watch on the effects of medication on mobility.
The attitude of the caregiver should be positive and to maintain calm and composed
mental status to avoid provoked responses. It is advised to have a silent,
moderately lighted environment to practice the exercises. Any distractive environment
brings non-cooperation from the person with HD.Aerobic exercise has its own
advantage of keeping the healthy heart thereby keeping the brain healthy too.
Simple walking starting from 5 to 10 minutes up to 45 minutes a day is a regime
followed universally. Studies have found that other than improving endurance,
aerobic exercise can offer neuroprotective effect which means slow down of
the severity of the diseases.
Finally, the compassionate approach by the stakeholders indeed is very much
in the card for the successful management of Huntington disease.
Swallowing difficulty could be of various types depending on the muscles
affected. The oral musculature may be impacted wherein, for instance, due
to involuntary movements of tongue muscles there may be difficulty in
chewing, inability to form a bolus and swallow it. In addition pharyngeal
and oesophageal muscles may also be affected. There can be a delay in the
triggering of swallow reflex and hence there may be premature spillage of
food or liquid into the passage backwards in the mouth. Food passes
through 3 phases before it reaches stomach (oral, pharyngeal and
oesophageal). In all 3 phases, there is involvement of voluntary muscle
movement and automatic coordination, which can be affected sooner or later
in the course of HD. Depending on the severity of impairment, patients are
advised to adopt compensatory measures to minimize the impact. Some
compensatory measures include eating slowly, eating more semi solids,
chewing slowly enough to form a bolus etc. Swallowing difficulty assumes
greater significance also for the reason that there can aspiration of food
(food entering the wind pipe and then lungs), which could be dangerous. So
any difficulty in eating/swallowing should be addressed with a certified
clinician before it gets worse. Needless to say it significantly affects
the nutritional and hydrational status of the patient with HD.
Abnormal whole body posturing can also affect eating and swallowing. The abnormal
posturing, which is due to excessive involuntary movements, often prevents
the ease of transport of food or drink from the hand to the mouth and causes
spillage.
Educating people with HD and the caretakers (family, others) about swallowing
aspects is the first step in management of dysphagia. Safe swallow strategies
during eating and drinking include using an appropriate posture, avoiding distraction,
not taking in too much quantity at each intake as well as gaining more control
over food / water in mouth through feedback.
Quality of speech gradually deteriorates during the course of HD. Again
there are many types of impairments depending on the types of muscles
involved and the amount of incoordination in each case. Voice production
may also be affected with arrhythmic expiratory bursts. Few patients may
have slow speech and difficulty in uttering specific syllables, where as
other few people may have explosive speech etc. Being patient, attentive
to their speech and encouraging them to communicate using verbal and
non-verbal modes can act against the progression of the disease especially
thinking abilities.
People with HD must be provided with enough safety measures, such as appropriate
support and space, during speaking, as their involuntary movements could be
enhanced while speaking. Feedback on various aspects of speech like breath
support, voicing and pronunciation might help some people with HD to improve
their speech quality. Gestures may be encouraged along with speech, if necessary,
since the goal is effective communication. In addition assistive devices may
be used for effective communication as well. However, these devices need to
be individualised given the involuntary movements in people with HD.