ALS is a thief, it is also a cruel Warden and betrays you without warning. ALS is a four-letter word… Trust me it is. ALS ruins relationships, families and finances and never apologizes for doing so. ALS is divisive, devious, devastating and most of all it is demanding, relentlessly demanding!
How is ALS a thief you may ask?
ALS is a thief because it steals mothers, fathers, brothers, sister and children from their loved ones. As a thief it begins by stealing one’s physical abilities, such as a person’s balance, their ability to walk the capacity to grasp with one’s hands, but it doesn’t stop there. ALS also steals one’s voice and eventually their breath and in rare cases their mind. The sad part about ALS being a thief is that your body is the perpetrator and the victim, a cruel twist of fate.
For the most part ALS is a random Thief however there are some families where it dwells and wreaks Havoc family member to family member, this is known as familial ALS. Can you imagine living your life waiting for the thief to strike.
ALS is a cruel and heartless Warden, what do I mean by this? As ALS ravishes your body and your physical abilities it leaves your mind in tact. Eventually when you lose your ability to speak to move and to take your own breath you are truly a prisoner in your own body. ALS betrays you without warning due to the fact that from one day to the next you won’t know if an ability or capacity to use your body will be present that day. Some patients experience drastic changes While others progress at a much slower pace. This is one of the cruelties of this condition, it varies drastically from Patient to Patient.
ALS is fatal and has no cure at this time. As a terminal condition it ruins lives, not just the patients but everyone connected to pALS (Person/Patient with ALS). Sadly there are life partners that are overwhelmed by the condition and the commitment required to care for a patient, that are broken and are not able to stay in the relationship. ALS ruins families financially due to the fact that it requires on average $200,000 to care for an ALS patient. This is compounded by the extremely complicated and ineffective Healthcare System our country has.
Lastly ALS is relentlessly demanding, never giving an inch never stopping. It demands your pride, your modesty and ultimately your life. It demands every ounce of energy you have, it challenges your State of Mind daily sometimes from moment to moment. It demands and exacts a toll on your loved ones as they attempt to keep their spirits and energy up as they meet your every need. Caregivers of terminally ill patients suffer a double insult due to the exhausting nature of caring and ultimately losing their loved one.
Yes ALS is a slew of medical terms, signs and symptoms, but to those affected by it it is more then scientific words and terms… It is a THIEF!