Sunday, October 25, 2009

The Abstract and the Real

All this viral research and treatment is heady stuff, riddled with uncertainly. On a daily basis the Patient Advocate has to deal with much more mundane matters. There are some items that can be helpful and the PA will list some of them now, some of the things that have been useful to his daughter.

Oasis bedroom: (see Lisa Nagy)

Stair lift:
In order for my daughter to get outside, the Patient Advocate has installed a stair lift. The PA researched the subject on the internet and talked to a number of companies. He learned all about stair lifts and learned that they are very expensive. The PA bought one on Craig’s list in 2007 from a fellow who lived on the beautiful plateau above Red Wing, MN. This fellow's wife has MS and had recently been institutionalized. I asked this fellow if his wife had taken LDN and he said yes, but it had done nothing to halt her descent. In my search I discovered that many folks are trying to dump their stair lifts and the used price can be quite inexpensive, relatively speaking. I drove down to Red Wing, bought my two sons Red Wing boots, and picked up the stair lift. Back in St Paul, I installed the lift in a day or two, gleaning advice from a local distributor of the particular brand that I purchased. They were extremely helpful, especially in cutting it down to the right size. This job taught me one thing: I do not want to install stair lifts for a living. With this stair lift my daughter is able to easily go up and down the stairs as she wishes. A year later I ended up buying and installing another one for the stairs off her porch. This purchase and installation followed the pattern of the first one. I bought a used starlit - a different brand - off Craig’s list from a fellow in Robbinsdale, MN. His mother had passed away and he was moving on. His mobile home and motorcycle were sitting in his driveway, ready to take off to points unknown.

FIR (Far Infrared) sauna:
In doing the Acumen and Biolab mitochondrial tests (suggested by Dr. Myhill), information was revealed that indicated that use of a FIR sauna might be beneficial. The PA did some research on the subject and found that they too are very expensive. There are several kinds of FIR saunas: closets, domes, and blankets. The PA settled on getting a dome sauna. Noodling around the PA found a used FIR sauna - almost new - at Arrowroot, a local health food store in Bryn Mawr PA. The woman who originally purchased it had used it twice and returned it. Such are the values of the bourgeois. The store was willing to part with it for a greatly reduced price. They also shipped it to MN as part of the deal. They were happy to get rid of it, I was happy to get it. I had it sent to a friend’s house in St. Paul, MN and it sat on her porch until I arrived in MN several weeks later. It was snowing when I arrived, and it had been for some time. It was January 2008 and there were large snowdrifts everywhere. I schlepped the somewhat heavy and awkward sauna across the snow to my rental car, slipping and sliding in the dark. This was not what I had in mind when I shipped it to MN from the mild climate of Philadelphia. I got it to my daughter’s apartment and set it up, to make sure that it still worked. I was a bit concerned as my friend had left it on her porch in sub freezing weather for several days. I had asked her to put it inside but that did not happen. The world is not a perfect place. It is difficult to have total remote control. Upon investigation, the FIR sauna worked fine. Later, much later, my daughter started using the sauna. It provided great benefit in reducing nickel.

XM radio:
I have listened to XM satellite radio for a number of years. They have hundreds of channels including all sorts of music, talk, old time radio, oldies, sports, news and business. It is a bonanza for someone who likes to listen to the radio, for someone who can embrace that culture. I got the idea of buying a subscription and a radio for my daughter. I drove out to a local mall in MN and purchased a portable XM box and set it up in her room. My daughter was a bit skeptical about this, but soon became an excited listener of music, talk shows, news and baseball. Supposedly the world of radio has seen it’s day, -but it’s magic can still be summoned up by the chronically ill or others who want to invite a variety of airwave situations into their life. It is particularly useful to those who have light sensitivity and to those who employ a disciplined form of resting and pacing - as advocated by Bruce Campbell.

Water Filter:
This PA is convinced that it is important to control all things that the patient puts into their mouth. Meat should be anti-biotic free and free range. Water should be filtered. This PA bought a water filter from a fellow in MD suggested by Dr. Jacob Teitelbaum. Teitelbaum says, "The filter that I have found to be most effective is made by Multi-pure. Multi-pure filters can be obtained from Bren Jacobson at 410-224-4877."

Following the advice of Dr. Benjamin Natelson, the PA bought a pedometer that my daughter wears. This allows us to determine how much she moves on the average day. It also gives us a baseline to gauge increase or decrease in the ability to move around. Some pedometers are more accurate than others and it is important to get one that works well. We tried a number that were misleading, until we focused on the one that Dr. Natelson recommends in his fine book, Your Symptoms are Real. Dr. Natelson, who practiced for years in Newark, NJ, now practices in New York City. Dr Natelson is a doctor who does fine research in CFS/ME. His suggestions on the use of a pedometer and on the increasing of the “energy envelope” are very useful and practical.

This was the suggestion of Dr. Karen Vrchota of Winona, MN. Dr. Vrchota is a very kind and compassionate CFS/ME doctor. She has growing experience with this disease and engages it in the most professional and respectful manner. She is open to suggestion and listens carefully. A mini-trampoline, used in even the most minimal way, say four bounces, helps the lymphatic system of the body. It is a partial replacement for exercise for those who cannot exercise. The movement on the trampoline, even the most modest, makes the body think it is exercising. In this way it can be a great help to CFS/ME patients. I bought a Cellerciser mini-trampoline. The are others, but I would pay the money for a good one.

Shower chair:
A shower chair can be useful in the shower. Shower chairs can be purchased in a variety of places including drugstores, medical supply stores and places like Target.

Nickel-free cookware:
In order to limit the ingestion of nickel, this PA bought nickel-free cookware for his daughter. All stainless steel cookware has nickel in it. Nickel-free cookware is not cheap. This idea is a continuation of the notion of being careful what goes in the mouth of a chronically ill patient. I was able to find two brands, Silit and Chantel.

Head set for phone:
The PA bought a head set that plugs into the phone. It is like one of those things that operators wear. His daughter uses it when she is on the phone. It was purchased at Radio Shack


  1. You are to be commended for being such a caring, loving father and patient advocate for your daughter. If someone reading your blog finds need for a Patient Advocate in Central Florida, he/she may want to contact Patient Advocates Of Orlando,, 407-790-0796.

  2. I second what the poster before me said, I'm 32 years old, and I often feel alone and overwhelmed with this illness, so I can really appreciate your job as a PA!

    I did want to caution you and your readers about the trampoline though. I have CFS, and thought rebounding would be a great low-impact way to exercise in my tiny apartment. Recently, in retrospect, I've come to the realization that every time I've tried it, I seem to start having problems with POTS, which usually leads to a crash and being mostly bed-ridden for quite awhile. Mind you, I was using it for at least 5 minutes at a time, so maybe you've got the right idea with the 4 bounces...

    I've actually come to the realization that any exercise that involves up and down motion, like an eliptical trainer, may be responsible for triggering my previous CFS crashes, I'd never read that specific anywhere before, so wanted to mention it...

  3. I am also a big fan of the mini trampoline as a way to have fun and stay fit! The Cellerciser is a great product for that.