Communication Devices

I knew what was coming in this area and I did a lot of research on communication devices. The ALSA assistive technology person was very helpful. Working with the VA, where I got my medical care, I had the opportunity to try out various devices. The one I liked the most was the Vanguard Vantage System (http://www.aroga.com/Com_Aids/ca_products_detail.asp?Item%20ID=2101). It gives you the choice of both a picture-based overlay and a word-based overlay. I found the picture overlay to be counterintuitive. I am told it is better for children. They are wired differently than us senior citizens. I used the WordCore overlay but I found it was quite difficult to program. Once the data was in the machine, though, it worked very well.

I was lucky to have my device provided by the VA. Does anyone know if Medicare covers this machine?

Has anyone else researched or does anyone currently use this machine? Any other devices with which you have had success?

Pix from October 2007 Walk to D'Feet ALS

This is my team (Tony's Trotters) at the 2007 DC Walk to D'Feet ALS. We had 50 members. Over the last three years we have raised $30,000.


This is my golf team buddy, Dahn Linkins, and his family. They have walked all three years.
This Ellen Cochrane and Hank Willner. Ellen runs the support groups and patient services at our local ALSA chapter. Hank is my hospice doctor. He has made ALS his "hobby." He is a fine golfer and we have a great time when he comes over.

8 Things I Would Rant About if I Had the Time

In 1961 Newton Minnow, head of the FCC, described television as a "vast wasteland." In a recent book, someone said something very similar about the internet. Major contributors to the terabytes of stuff include blogs, videos and spam. The first category of blogs is personal on which we are forced to read about what someone has for breakfast every day. The second category is the blogs that pass on jokes or links to feel-good sites. Another category fills the scene with pictures and videos ranging from the blatantly X-rated to the slightly cloying pictures of animals. Many blogs are socially redeemable. They are issue-specific and often include helpful information (hopefully like my blog) or express views that may be in the form of bleats, venting, rants, philippics, and even jeremiads. You may have thought from the title of this posting that I’m about to go on a rant, but you would be wrong. I don’t have the time to tell you about all of my pet peeves; I’m not going to be an Andy Rooney. Rants often provoke scathing replies and can trigger instant defamation of character, which can only be erased by hiring a special consultant. I am providing a Letterman-like laundry list of things that bother me. You can probably tell where I stand on these issues; however, by not expanding on any of them I hope I will be able to escape instant defamation of character.

Speed humps
Reality shows
Fearmongering
Traffic Calming devices

and finally the 4 greatest cons ever pulled on Americans:
SUVs
McMansions
Ethanol
Bottled Water

Feeding tube

I opted for a feeding tube well before I needed it. The interventional radiology approach seems to be preferable to the older PEG procedure. It was a simple outpatient procedure that worked well for me. I have heard horror stories about PEGs that ended up in the wrong places (e.g. the small intestine). I was told that I had to have the procedure done before my lung function dropped to 50% forced vital capacity (FVC). I’ve had the tube almost 2 years and am still eating soft foods. The tube is a great help in hydration. I also take some of my meds through the tube. It is important if you don’t use the tube regularly to flush it daily with a syringe. It’s important to flush it with water after each use. I have gotten conflicting advice about the frequency of changing the tube; some say every 6 months, others say whenever it malfunctions. I’ve had it changed 2 times in almost 2 years. The first time because the inflatable bulb inside burst.

I started out with what is called a G-J tube, as recommended by my gastroenterologist. He was concerned that later in the disease I might have acid reflux which could lead to aspiration. When they do the procedure they insert both G and J tubes in the stomach, then feed the J tube down into the jejunum. I haven’t had much acid reflux so with the last replacement I opted to have just a G tube. I’d love to hear from others about their experience with the J tube. I heard from one MD that it takes longer to feed through the J tube because the jejunum is smaller than the stomach. I was also told that an RN could do the replacement of a G tube. I’m glad I had my replacement done in the hospital because there were complications.

As I proceed through the list of things that I can no longer eat by mouth (peanuts, dry cereal, steak), I have surprisingly few regrets. I love good wine and a cold beer and still drink them. I will miss them greatly when I can no longer drink them orally, but I can put them through the tube…it’s a shame my stomach doesn’t have taste buds!

As always I’m interested in others sharing stories with best practices!

Hospice for PALS

I enrolled in hospice in March 2007 even though my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients. People make a big mistake by viewing hospice as reserved for people in their last few months of life. The word hospice is highly emotive in our culture along with expressions like “dead man walking.” As a result, people often wait too long before enrolling. I think that’s a mistake.

Our local hospice provides a weekly visit from an RN; 3x weekly visits by a CNA who helps with my bathing; a monthly visit from a MD, PT, and social worker; and an occasionally visit from a chaplain. Hospice provides such supplies as bandages, enemas, chuks (paper sheets to sit on), some meds and equipment (hoyer lift, hospital bed, etc). Our hospice offers a 24-hr emergency number to call; it is staffed by an RN who can walk you through any situations that may arise after business hours. That's a great comfort for my wife. And Medicare covers hospice expenses, so we have no copay. The people have been absolutely wonderful and they are an important part of my support team. The last time the MD visited I noted that I had been with hospice for more than 6 months. I asked him how much “overtime” I would be allowed; he said I could be in hospice as long as I’d like to. Most people think of hospice as something for the last 6-12 months of life, but no one knows how long they have and, as long as your condition deteriorates, you continue to be eligible. PALS don’t always deteriorate at the same rate, but we all know that this is not a disease that you recover from.

My personal “commandments” of navigation.

Remember I am not "fighting" this disease. I am trying to outwit it, gaining precious days and weeks of life by anticipating my needs. I think everybody in the ALS community will agree that there are a few "commandments" that we all should follow.

-Keep up your body weight – move to feeding tube to avoid choking and chewing

-Preserve your breathing muscles by starting early with bipap & sleeping at 30-degree angle

-Continue range of motion exercises religiously to avoid freezing up.

-Maintain excellent skin care to avoid pressure sores

-Avoid hospitals at all cost – protect against falling, UTIs, colds, pneumonia

-Be nice to your caregivers

-Communicate what you want while you can

-Include frequent bursts of hearty laughter

-Avoid filling your days with relentless work projects – add a mid-afternoon nap to restore energy and reduce stress
Follow these commandments and, in the words of the immortal Adrian Monk “you’ll thank me later.”