ALS After the Diagnosis: Lou Gehrig's Disease

The diagnosis of amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig's disease, or motor neuron disease (MND), can be a frightening experience for patients, family members and their friends, because neurological disease has symptoms of progressive muscle weakness and associated debilitation.

Understanding the nature of ALS will prove beneficial in helping everyone to cope with the disease after the initial diagnosis. 

The Mayo Clinic website suggests, ”ALS often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects your ability to control the muscles needed to move, speak, eat and breathe.”

Patient teaching will be important depending upon the stage of ALS. He or she may have limited awareness of the nature of this debilitating disease process, which can prove frustrating. Ongoing emotional support from the spouse, family members and friends will enable the patient to cope with disability resulting from ALS, as well as with respect to his or her long-term prognosis. Encouraging patient optimism is important.

  

Ideally, nursing care management for the ALS patient should include loving care, concern and compassion on the physical, mental, emotional and spiritual level. Initially, the patient, a spouse or other family member may be willing and able to assume responsibility for medication administration, skin care, physiotherapy or speech therapy, etc., under appropriate professional medical guidance. As the disease progresses, further assistance may be necessary.

Symptoms of ALS depend upon the neurons that are affected. Accurate record keeping with respect to persistent, as well as new or developing symptoms, will be vital in the ongoing treatment. Careful and consistent patient monitoring of symptoms will help to identify problems related to walking or hand coordination, as well as those associated with speech and swallowing, or involuntary muscle movements. Reporting these symptoms to the family practitioner and neurologist will be important in order to determine the various stages of the progressive disease.

Identifying the suspected cause of ALS and altering the patient’s environment accordingly, may help to reduce or eliminate hazards like ongoing chemical exposure. It may also be possible to reduce stress related factors. 

Since ALS has a genetic aspect, DNA testing may be important for other family members.

Counseling of the ALS patient, his or her spouse and family members, on a one-to-one basis or in group therapy sessions may prove helpful. It is often possible to prevent, lessen or resolve problems related to the disease, through professional counseling or support groups for the patient, his or her family members and friends.       

In the later stages of ALS, where there is increasing debilitation, palliative care will be necessary. The period immediately after the initial diagnosis may be difficult for everyone, including the patient. He or she will need assistance to address other concerns related to legal matters like having a will, power of attorney, beneficiaries, transfer of property, insurance claims, etc.

Note that there is ongoing medical research with respect to ALS and new discoveries are possible at any time.