Does the Medical Community Not Know About ALS?

[chrismaya]

I am trying to get my mother into either a Hospice or nursing home. You don't know how many times I have heard, "Well, if your mother were to get better and be able to walk on her own............" "If your mother takes a turn for the better................."

I am not trying to dash the hopes of anyone truly FIGHTING this, and I believe a TRUE FIGHT can be won, to at least some extent.

But, heck, don't people know what ALS is? My mother isn't going to get better and walk on her own!

Does anyone know what I mean? Doesn't Hospice know this is fatal and my mother likely won't "improve and get better?"

What the heck?

 

[Al]

In answer to your question. No they don't. When I was diagnosed my GP had never seen a case of ALS in 20 years of practice. Now he has 3 of us. It's an uphill battle to educate people.
AL.

 

[wright]

The medical students and the nursing students (prospective RN BSN students) we teach at the university most certainly are taught about ALS (I actually make it a point to spend more time on the subject). The medical students get it in much more detail. However, they are also taught about many, many, many other disease states and are more or less bombarded with a tremendous amount of information. Because of that, a lot of information is unfortunately lost. They might recall it but they don't quite remember the details of a lot of things.

When they go on to specialize in neurology and other disciplines that require knowledge about ALS, then they get it in a lot of detail (some more than others). People that work in a nursing home will more than likely not know what ALS is, because they don't get the information in that much detail (most of those nurses are LPN's and not RN's). I'm actually a bit surprised that those working in Hospice didn't know, considering they must have ALS patients in their care.

ALS is getting more and more attention and so more and more of those in the medical field will become aware of it.

 

[BethU]

I am trying to get my mother into either a Hospice or nursing home. You don't know how many times I have heard, "Well, if your mother were to get better and be able to walk on her own............" "If your mother takes a turn for the better................."

I am not trying to dash the hopes of anyone truly FIGHTING this, and I believe a TRUE FIGHT can be won, to at least some extent.

But, heck, don't people know what ALS is? My mother isn't going to get better and walk on her own!

Does anyone know what I mean? Doesn't Hospice know this is fatal and my mother likely won't "improve and get better?"

What the heck?

I had the same conversation with the case worker for a foundation that is supposed to help with medical expenses. This guy has another ALS patient, too, in his caseload, so he should know better, but during our interview he kept making remarks about maybe there would be improvements in my symptoms.

I said, "You realize this is ALS we're talking about. This is a fatal disease. The symptoms are not going to go away. It's not going to get better." He said, "I was trying to help you be optomistic." I said, "Optomistic about what? That they'll suddenly discover that it's NOT a fatal disease after all? That's not an option for me. I have to face reality."

(Of course, I was saying all this with a Light/Writer and my garbled speech.)

I think for people like this caseworkers, who DO know what ALS means, they're so scared of it, they're scared to talk to patients, too. It's the way people used to deal with cancer ... never mention it and just pretend the patient doesn't have it. They used to use all these euphamisms ... "the Big C," ... so-and-so died "after a long illness."

Facing reality doesn't mean you've given up, or that you don't treasure every second of every day you're alive. It does mean acknowledging what this diagnosed means and living life as fully as possible while learning to cope with increasing difficulties.

I hope I got through to the caseworker that it is OK to acknowledge the seriousness of the disease, and that he doesn't have to pretend for my benefit that things will improve.

Lord, if hospice workers don't understand the implications of ALS, we're all in deeper doo-doo than I thought!
Good luck on finding a solution for your mother. She is blessed to have you helping.
BethU

 

[chrismaya]

I felt badly today, thinking about my post, because I didn't want to take any hope away from anyone. My mom is 78 and has some dementia and is truly in the very final stages of this disease, so things are a bit different. If I were to get diagnosed at my age (44), you better believe I'd be living and fighting as long as I could. I have four children. I actually know of someone in my area that has ALS and is plugging right along!

But all that to say, my mother was twice diagnosed as having "typical aging and brain shrinkage" for the longest time.

When she was finally diagnosed with ALS, you could have knocked me over with a feather.

Her primary doc didn't quite know what to make of her inability to swallow.

Her first neuro said she had typical aging.

Thankfully, ONE neuro knew what the heck to do, because he made the diagnosed, and she was subsequently confirmed w/it at an ALS clinic.

Kinda weird that the inability to swallow doesn't trigger something in the doc's!

 

[Al]

I don't know if it's a good thing or a bad thing that most doc's will never see an ALS case. My first Neuro had seen a few. My Neuro now has about 500 coming through the clinic per year if I recall his stats correctly (ft dementia?) on my part? I have about 7 or 8 different caregivers that come for home care. I think 1 has worked with an ALS patient before. They probably have 100 years of practice between them. We need to educate people in general as well as nhealth care providers.

AL

 

[CindyM]

Facing reality doesn't mean you've given up, or that you don't treasure every second of every day you're alive.

So true, Beth. If I ever get into an argument with anyone here or at home, it is over this topic. I tend to plan for the worst but hope for the best, but to some, even thinking that someday I might need breathing help, or a wheelchair, is the same as giving in.

 

[fiddleplayer51]

I received a Bachelor of Arts in nursing in 1992 and do not recall learning anything about ALS. In my 15 years as a staff nurse at our local hospital I never once had an ALS patient.
In 1994 I was raising three teenagers alone and needed more income than I was earning at our hospital. I answered an ad in the paper to be an in-home caregiver for a man with ALS. I went to his house for the interview. We communicated via his eye-gaze laptop propped between his feet.
I did not take the job because I felt inadequate not knowing anything about the disease, and as a fairly new grad, I didn't feel as if I brought the necessary skills to the job. I got my extra income by working my weekends off from the hospital at a nursing home.
Last week I called the director of the nursing dept. at the college where I got my BA and invited her to incorporate my PALS into the clinicals so the nursing students (and instructors, for that matter!) could learn hands-on what ALS is all about. I told her that as an advocate for the ALS cause I feel this is a golden opportunity to raise awareness about ALS. Nursing students need to know about this disease! I told her that the pathophysiology behind the deficits encountered is completely different than for other diseases, and the students need to know about this so that if they encounter ALS sometime in their future clinical setting, they can care for the patient with understanding of the underlying process which causes the symptoms they are addressing.
She hasn't called me back yet, but I don't want this opportunity to go by. If they can just follow my husband's ALS to the end, they will gain so much knowledge about all aspects from disease process to the equipment required, to navigating the medical establishment/insurance etc., to the tremendous toll it takes on the family.
All best wishes,
Jane

 

[CindyM]

I think that is a great idea, Jane. I would think nursing schools would benefit form having their students connect with actual PALS.

 

[coolr]

I am 80 years old, diagnoses May 2007, ALS symptoms galloping ahead. Still walking with walker, speech difficult to understand even for my family, typing difficult--especially right-and fingers, excess saliva, some choking. It took several weeks (months?) for me to be accepted by Hospice. Their guidelines included inability to pick up a glass with one hand! Many don't know ALS, but maybe you can help them understand what you face each 24 hours.

I would encourage you to be persistent. It has been worth it for me. You could ask for their nurse to visit your mother and to evaluate her. For me, it took many phone calls and much patience on the part of my daughter before Hospice nurse gave me a second evaluation and they accepted me as a patient. Keep your courage and keep trying. Ruth

 

[CindyM]

I am glad your daughter was sucessful, Ruth. You make a good point: sometimes the helping agencies and medical community need educating before a PAL can get the service he or she deserves!