Neurology Now Sept/Oct 2009 issue

There are three articles in the current issue of Neurology Now that may be of interest to some:

Covering Adult Day Care (regarding the pending bill for Adult Day Care Services coverage by Medicare)

Get It In Writing (regarding Advanced Directives)

Fight Smart Not Just Hard (by Richard Bedlack, MD of Duke ALS Clinic)

Neurology Now - home

Thanks CJ.. Dr Bedlack's article was very good... sent it to a couple of well meaning relatives.

Yes I too thought Dr. Bedlack's article was interesting. He asks, what would I do if I got ALS? He says he wouldn't waste time doubting the diagnosis because it's almost always right. He wouldn't go overseas for stem cells and similar treatments because they are unproven and largely untested. He wouldn't try a lot of vitamins and nutritional supplements because every time they have been tested in people, they don't work.

So what would he do? Well, he'd take Rilutek, and mostly he would look for as many opportunities as possible to participate in clinical trials. He feels that this would give the best chance to be involved with a truly effective therapy given our current state of scientific knowledge.

I couldn't help thinking though that it is hard to know how one would actually behave when confronted with a life threatening challenge like ALS. It's one thing to say that you would do this and this when considering it hypothetically, but things may look different when faced with the reality. And the idea about clinical trials is not all that easy to put into effect. There are lots of clinical trials but only a few available in any given area. Unless you are going to uproot your family and move across the country to get into a promising trial, you may not have many options. Then with the rapid progression of the disease, your window of possible participation may be relatively short. It seems that often these trials are delayed for months or even years by technical and administrative problems, and by then you may no longer be a good candidate.

It's always interesting to see what people walk away with after reading an article like that. What I took from it was definitly relating it to our experiences. I took the message to not get so caught up in a desperate search for a cure that's not out there yet that you forget to spend that energy enjoying the time you do have, or have together as a family. Of course, that's quite possibly because of just returning from vacation, to another round of therapy sessions that really don't seem to make a difference other than to make Glen tired and cranky. We are definitly going to sit down and reevaluate what we think is helpful and neccessary, and what is just using up precious energy that could be spent elsewhere.

I also think for those of us whose PALs have FTD together with the ALS, the situation is a little different. But the article was thought provoking, and therefor a success!

Thanks CJ for the link. Some very good articles and Dr. Bedlack's articles is especially interesting because his own answers to the "What if I got ALS" question really parallels the way I look at having this disease. I never really questioned the diagnosis because my doctors had seen so many patients that they were probably right and all of my wishful thinking wasn't going to change anything. While I do believe that a good diet, getting lots of rest and reducing stress can do a lot for me in managing my symptoms none of that is going to make me well again.

I wish that I lived closer to my ALS clinic because then I would be more able to participate in medical trials but my life, my home, my family and my friends are all here so I won't be moving any time soon.

Well, I had mixed feelings about the article Dr. Bedlack wrote. But, it was interesting to read an ALS specialist's perspective. I agree that you could really never know what you would do til you were actually diagnosed with ALS. I would guess Dr. Bedlack would draw on all his resources to make sure he could live as long as possible...

CJ, Thank you for the wonderful link! I also thought Dr. Bedlack's article very thought provoking. It is very similar to our experience. We did NOT want a second opinion. Hearing "ALS" calmly slip through the lips of our Neurologist changed the journey of our lives in one second. Honestly, I think that my heart actually stopped beating for that awful second as the realization washed over me and my brain processed what my ears heard. It was not an experience that we wanted again. Once in a lifetime was enough for us. We did try Rilutek for one month at the cost of $1088.00 [money that we didn't have I might add]. It made Web horribly ill-out of this world nausea and made his twitching go into overdrive. Rilutek gave him no quality of life. We made the choice to not continue with this medication. Web is on a multitude of supplements and vitamins. Our thought is that it can't hurt, makes us feel empowered, we can at least afford these and maybe-just maybe it might stablize him. We are not geographically close enough to participate in clinical trials. :[ I have literally begged our ALS Clinic for Bipap and a peg only to have the Dr. tell me that they do not believe that it significantly alters the outcome. HELLooooo I understand that. We are talking about QUALITY of life here, not QUANITY! btw We are no longer going to that ALS CLINC. :] I am "burning and raving" as an advocate so I can really identify with that statement. I love his statement,
"Whether it’s a rip current or a terrible disease like ALS, let us all continue to “rage against the dying of the light,” but in a direction
that makes sense." If I could speak with him personally, I would ask him to tell me just exactly what he is doing as an Advocate that is altering the course of this horrible life robbing disease besides writing an editorial telling the rest of us to float and not fight the rip tides! I want to hear how he is donating his time and MONEY to increasing public awareness. I want to hear and see how many letters he has written demanding a cure. I would also like to know how much money he makes from the all the victims of ALS. I want him to put his money and time where his mouth is. Maybe he is? I hope so.

sortakinda what I was implicating. Although, I hope to God some body will find THE cure!

An interesting link to an article about Dr. Bedlack.

Third Viste Award Recipient Announced -- American Academy of Neurology

I really believe that any professional whether they are a doctor, a nurse, a speech pathologist,a dietitian or whoever who deals every day with ALS patients are very special people. Many, if not most medical professionals deal with their patients on the belief that the patient will be healed, not something that ALS professionals can look forward to. I have nothing but good to say about everyone at my clinic and while every one of them makes more money than I do, they deserve every penny.

You know when you look at it how easy would it be to go into a Medical specialty that is happy, Like Plastic Surgery, OB, so many happy endings. I often give thanks when I think about My doctor and so many other doc's I hear about on this site. I agree Barry, it is not easy taking care of something without a cure. I think if we would not have doc's looking at life enhancing things that we now have, we would not have as many options as we do now. I think it is only a matter of time when together with the help of doctor's, patients, care-giver's and loved one's that we will find a way to think of this disease as chronic, instead of terminal.

brooksea said:

Well, I had mixed feelings about the article Dr. Bedlack wrote. But, it was interesting to read an ALS specialist's perspective. I agree that you could really never know what you would do til you were actually diagnosed with ALS. I would guess Dr. Bedlack would draw on all his resources to make sure he could live as long as possible...

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You're absolutely right, brooksea. Doctors say one thing when it comes to the patient's needs but when the shoe is on the other foot they do something else. If Dr. Bedlack came down with ALS, trust me, he would be trying different supplements and treatments. Many supplements are still to be tested in trials.

hopingforcure said:

You know when you look at it how easy would it be to go into a Medical specialty that is happy, Like Plastic Surgery, OB, so many happy endings. I often give thanks when I think about My doctor and so many other doc's I hear about on this site. I agree Barry, it is not easy taking care of something without a cure. I think if we would not have doc's looking at life enhancing things that we now have, we would not have as many options as we do now. I think it is only a matter of time when together with the help of doctor's, patients, care-giver's and loved one's that we will find a way to think of this disease as chronic, instead of terminal.

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The Japanese seem to be a good model, hopingforcure. Half the ALS patients over there end up going on tracheostomy ventilation.

You are right Mike, wonder if it has something to do with the strong family unit's they seem to have? That is sure a good model for us to follow.. Keep fighting with me my friend.

hopingforcure said:

You are right Mike, wonder if it has something to do with the strong family unit's they seem to have? That is sure a good model for us to follow.. Keep fighting with me my friend.

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Glad to be in your corner, hopingforcure!

Als Editorial by my doctor.

Hey guys, I just thought that i would post the link to an editorial that my neruo wrote. He posted it on his facebook today. Here is the link.

Neurology Now - Fulltext (PDF): Volume 5(5) September/October 2009 p 40 Fight Smart, Not Just Hard.

Thanks, Ashley