This holiday season is bringing larger families back together again, which gives us a chance to see our older relatives.
You may be concerned if you notice behavior changes in your loved one that can indicate signs of something more serious.
Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, is a rare disorder in the US, affecting about 16,000 people.
ALS impacts a person’s ability to use their muscles over time. Caregivers will need to help their loved ones complete most of their physical activities, from running personal errands to helping them eat and dress themselves.
Every member of a family is impacted when a loved one receives a Lou Gehrig’s disease diagnosis. Because of its rarity, family members should educate themselves as much as possible about the disease to properly help their loved one.
In this article, we’ll explain what ALS, or Lou Gehrig’s disease is, and describe its earliest warning signs and symptoms. Help your loved one get tested and into treatment as soon as possible.
What is ALS, or Lou Gehrig’s Disease?
ALS is a type of neurodegenerative disease that affects neurons in the brain and spinal cord. It results in a loss of muscle control, muscle weakness, and muscle wasting.
The word “sclerosis” is a Greek word meaning scar. Both ALS and Multiple Sclerosis create scarring of the nerve fibers, however, MS is an autoimmune disease, whereas ALS is a nervous system disorder.
Over time, ALS can cause further health complications, including:
- Breathing problems
- Speaking problems
- Difficulty swallowing
Unfortunately, many people diagnosed with ALS have a life expectancy of three to five years after diagnosis. Although other people have been known to live with ALS for more than 10 years.
Risk Factors that Increase The Odds of a Lou Gehrig’s Disease Diagnosis
There is a stronger hereditary link associated with ALS than other chronic neurodegenerative disorders.
ALS is inherited in a small percentage of people, around 5% to 10%, however, because ALS is such a rare disease, it appears to develop in people by random chance.
The risk of developing ALS is higher for older adults, commonly affecting people in their 40s to mid-60s.
Men are more at risk of developing ALS before the age of 65, however, over the age of 70 ALS affects men and women equally.
Environmental factors may also contribute to developing ALS, including smoking, environmental toxin exposure, and having a previous military service experience.
What are the First Signs of ALS?
People affected by ALS usually will notice unusual muscle twitching or weakness in a particular limb. They may even begin slurring their speech without knowing why.
Usually, ALS will present itself first in the hands, feet, or other limbs, and then gradually spread to the other parts of the body.
Common symptoms of ALS include:
- Muscle twitches
- Muscle cramps
- Stiff muscles
- Slurred speech
- Difficulty eating and swallowing
- Difficulty moving and walking
- Hand weakness
- Worsening posture
- Dropping things
How is ALS Usually Diagnosed?
Like other types of sclerosis diseases, diagnosing ALS can be difficult as there’s no definitive diagnostic test.
A doctor will need to perform a thorough clinical examination, including running other diagnostic tests to rule out other diseases that may be causing your loved one’s symptoms.
What Diagnostic Test Confirms ALS?
Most doctors will perform a comprehensive diagnostic workup consisting of several tests to determine whether or not ALS is causing your loved one’s symptoms, or if it’s another disease that mimics the effects of ALS.
The comprehensive test includes:
- Blood testing
- Urine testing
- A spinal tap
- Electromyography (EMG)
- Nerve conduction velocity (NCV)
- Muscle and nerve biopsy
- A neurological examination
How Long Does ALS Take to Diagnose?
Doctors say that it takes anywhere from nine to 15 months to reach an ALS diagnosis. On average, it takes 11.5 months, with diagnostic timelines lasting longer for adults older than 60 years old.
This time spans from the very first symptoms, usually, an unusual muscle twitch, all the way to receiving a final diagnosis.
It takes on average around three doctors to fully diagnose ALS.
Unfortunately, diagnosing the disease can take longer because there’s no test that singularly diagnoses ALS, and doctors will need to run a series of tests, which take time to process and analyze.
What Are the Other Diseases that Mimic ALS?
It’s important for doctors to rule out ALS mimics, different types of diseases that can cause similar muscle weakness symptoms.
Misdiagnosing ALS can have largely negative consequences, and for this reason, doctors will perform several different tests to deduce the likely cause of the symptoms.
Below is a list of other diseases that mimic the symptoms of ALS:
- Lyme’s Disease
- Kennedy syndrome
- Progressive bulbar palsy
- Progressive muscular atrophy
- Myasthenia gravis
- Lambert-Eaton myasthenic syndrome
- Heavy metal intoxication
- Multifocal neuropathy
According to the ALS Association, anyone diagnosed with ALS should seek a second opinion from an ALS expert to confirm their diagnosis and rule out an ALS mimicking disease.
Caring For Your Loved One with ALS at Home
If you’re caring for your loved one, whether they’re a parent or a spouse, you will need to work with their healthcare team to administer the proper medications and keep them mobile to help them retain their strength.
You can help your loved one by taking them to their doctors’ appointments, making sure to take notes, and asking any questions.
In addition to taking them to appointments, you can help them perform physical therapy at home by scheduling at-home activities.
At a later point, you may consider hiring an in-home nurse who can help your loved one complete their daily activities, such as getting dressed, bathing, and taking their medications.
Many people consider an assisted living community that offers memory care and rehabilitation services on-site so their loved one can receive the level of care they require at all times.
Specialized Care for Your Loved One at The Kensington Redondo Beach
The Kensington Redondo Beach is an enhanced assisted living, memory care, Alzheimer’s care, and ALS care community located in sunny Redondo Beach, California.
Our community is uniquely qualified to offer a wider spectrum of healthcare services not normally offered at traditional assisted living communities, including:
- Employing a staff of licensed nurses working 24/7
- Nurses who can administer medications and injections
- An on-site Physician’s Office during business hours
- Rehabilitation specialists, including physical therapy, speech therapy, and occupation therapy
- Two distinct memory care neighborhoods for people in the early to advanced stages of memory loss, caused by Alzheimer’s, dementia, Parkinson’s, MS, and ALS
In addition to our healthcare services, we also create and maintain a friendly and fun atmosphere, offering life enrichment classes and activities to keep our residents happy and healthy.
If your loved one received a Lou Gehrig’s disease diagnosis, and you’re a caregiver struggling to give them the level of care they require, contact us to learn more about our unique qualifications to help care for your loved one.At The Kensington Redondo Beach, we extend Our Promise to you — to love and take care of your family as we would our own