ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, January 10, 2012

Who Cares?

There is an article in this morning's Wall Street Journal about the spike in heart attack incidence within days of the death of a loved one.








A study of 1,985 adult heart attack survivors finds that heart-attack risk rises to 21 times higher than normal within the very first day after a loved one has died.


That sharp increase in risk tapers off with each day, but is still almost six times higher than normal within the first week and stays somewhat elevated for at least a month.




ALS caregivers work through a cruel mix of physical exhaustion and a creeping grief of watching a loved one slip away. They don't have time to go to the dentist. They don't have time to get the blood pressure checked. They don't have time for the routine bloodwork that can give an early signal to something serious. They get all kinds of bad advice from well-meaning friends. A healthcare professional never screens them for depression. Forget the colonoscopy. They self-medicate for aches and pains and skip vaccinations because there just isn't the time to deal with their own health when their loved one with ALS is seriously ill. Healthcare delivery doesn't give them an express line to a physician when they call for advice or an appointment.



Our ALS organizations, ALSA and the MDA, tout their multidisciplinary clinics as the most efficient and effective way for people with ALS to receive healthcare. They spend hundreds of thousands of dollars to keep these clinics available to patients. The caregivers drive patients to clinic and park the car and help the patient navigate the clinic and to listen to the advice of the neurologist and the pulmonologist and the therapists. Would it be that difficult to have a little primary care (think Walgreen's primary care) resource for caregivers during those visits? Would it not be part of responsible and holistic healthcare to include the basic health needs of the caregiver during that one-stop shopping visit for dealing with ALS? Talk about a missed wellness opportunity!



Has anyone done a study on the health outcomes of ALS caregivers after the deaths of their ALS patients? I'll bet there is a spike in a lot of health problems. Could we not save some lives by paying attention to caregivers' health?

3 comments:

  1. Amy Mallison-AustinJanuary 10, 2012 at 8:44 AM

    I thought of this very thing when I heard this on the news this morning. Caregivers take a pounding while caring for PALS. It's exhausting. We need some TLC, too!

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  2. Nice post about "who cares". As we speak, I have been try to medicate pain away for a muscle cramp that runs from my lower back and wraps around to my upper thigh. I haven't gotten a flu shot yet, I need to call and make an appt for my mammogram, bone scan and my thyroid recheck as I haven't had that checked in 2 years. My skin is a mess from stress and haven't been able to get back to the dermatologist for the 3 month follow up for the medication I'm on for that. Free time is for paying bills, cleaning up and zoning out with a book, computer or some lame tv show. When all your energy goes into worrying about one person in the house, the thought of taking care of myself is too overwhelming, because the kids come before me. I know, I know, I need to take care of me to take care of everyone else. Maybe that will be be my New Year's resolution.

    However, my Pal has an appt today, which I will take him too, then he wants to go down to run an errand and so some where we will stop to have lunch where I will feed him while grabbing a few bites of something for me, then we will drive back home where I will have to magically create something for dinner with what I have in the fridge because the thought of stopping at the grocery store at 4 pm is too overwhelming.

    Then tomorrow it his weekly scheduled acupuncture appt and then to our 3 month ALS clinic. On Thursday, more errands he wants to run so we will do that.

    Friday, I do have an appt scheduled with my mental health counselor, thank goodness.

    Caregiving is tough work. But then so is living with ALS like my PALS does, mostly without complaining....

    THanks for thinking of the caregiver. I hope the ALS organizations can figure something out.

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  3. ALS has caused my health to start to fail. How can I do everything that I need when I am sick right now with some kind of bug? I really think the ALS association should help by allowing us access to doctors for us (caregivers). We HAVE to be well, we don't have time to be sick. Our lives are so busy without the aches and pains from moving our PALS and their equipment. If they want to make sure PALS are taken care of, they have to care for us!

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