Date: Mon, 18 Dec 95 12:20:59 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD231 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#231, 17 December 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 1320+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your full mailing address. == == They are free-of-charge. International requests welcome. == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Incorrect WWW address for "A Patients Guide ALS" 2 .. ALS Guide Part 2 - Practical Tips (1) ===== Incorrect WWW address for "A Patients Guide ALS" ========== >From : stewar1@ibm.net Date : Sat, 16 Dec 95 09:04:23 Subject: Incorrect WWW address for "A Patients Guide ALS" Bob, I'm not sure if you want to post a correction, but Doug's WWW page for "A Patient's Guide to ALS" can be found at: http://www.phoenix.net/~jacobson/beatals.html What was reported in ALSD 230 causes an error. Cheers, Ross Stewart stewar1@ibm.net (2) ===== ALS Guide Part 2 - Practical Tips ========== Date : Thu, 7 Dec 1995 15:58:56 -0500 >From : PALSMD@aol.com (D. Eric Livingston, M.D.) Subject: ALS Guide Pt 2 - Practical Tips Practical Tips Funds for services and equipment that you're unable to afford may be available through a variety of organizations, see "Organizations & Resources." Eating is extremely important. Missing meals because of difficulties with eating can have a dramatic effect. Poor nutrition may cause weakness, falling, irritability, listlessness, fragility of bones, and even weaken your immune system. In short, accelerate all the bad things. The sensation of choking is a terrifying experience; however, it is rarely the cause of death in ALS patients. Still, you must be extremely careful and know when it's time to talk about a feeding tube. Concentrate - Avoid distraction, talking, laughing, etc. This may go a long way to keep you enjoying food. Head position - Generally speaking, the mechanics of swallowing favor your chin lowered, (looking down at your plate). You may find it easier turning your head either slightly left or right. Food - Eat any food you like, the higher the calories the better, unless you have other medical problems that limit you, ie Diabetes, check with your doctor. Thin liquids - may be hard to control. Try thicker liquids or use thickeners, eg "Thick-it." Meat - I like to use a sauce, gravy, mashed potatoes, etc., to keep it moist. Try smaller bites. Let someone else cut it up rather than fatiguing yourself. Consistency - Choose easy to eat foods or modify those you like in a blender. Utensils - Try built up handles or specially made angled spoon, fork or "spork." Feeding - Consider smaller more frequent meals- 5 or 6 times a day. Accept being fed early, nothing worse than a slow, frustrating, cold meal you don't finish. Pills - Try taking with applesauce or thickened liquids if you have trouble swallowing them. Independent movement may become impaired but still possible for some time. I believe the phrase, "If you don't use it, you lose it" is particularly relevant to those of us with ALS, of course when done with appropriate precautions to avoid set-backs. The only thing worse than losing your ambulatory independence is falling. Try to maintain movement around and out of the house with the right level of support. Footwear - Socks alone on a smooth surface may be slippery. Slippers or good fitting, comfortable shoes with rubber soles are generally better. (High Tops) Surface - Not only are slick tiled floors potentially hazardous, but thick cushioned carpets, rugs or uneven surfaces may become considerable obstacles. Rails - Take advantage of railings whenever possible, especially over difficult surfaces, stairs or on "bad days." My wife & I have a code word, "rail," which means for her to put an arm out like a rail for me to use. Walker - I fell several times before I accepted a walker. When I got it, I realized how much safer and easier it made my life. A tray or bag to carry things (phone, remote control!, book) is easily attached. Wheelchair - Again, don't be an "Ironman" or woman. Order early, it may take a while, especially if you're going through an insurance company. Wheelchairs are fairly sophisticated. You should have a "Seating," where the chair is custom fitted to your body including a cushion and to meet your specific needs. Bathing can be made safer and easier with a few simple modifications. Hand held devices - consider built up grips, elec razor & battery operated toothbrush. Toilet - Handrails and toilet seat extension. Shower - Hand held sprayer a must, some type of seat (bench type or shower chair), hand rails and a non-slip surface. Dressing can also be made easier as you lose use of your hands by making some simple modifications. Larger - looser fitting Tee shirts, underwear, socks. Elastic - waistbanded shorts or sweat pants. Velcro - in place of buttons or zippers on pants and shirts. Elastic - shoe laces, long handled shoe horn. Exercise is an issue that remains unclear as to whether there is an ideal strategy. What most can agree on is that: Exercising - to strengthen muscles won't prevent progression of the disease. Exercising - doesn't seem to worsen the progression of the disease, although you may have a prolonged refractory time, or recovery period, and feel weak for a couple days. Moderation - of exercise or activity level is probably the best way to maintain optimal muscle tone and range of motion. Do what you can, safely. Preservation is the goal. Appliances may make a dramatic difference in your independence, safety and quality of life. Consider what difficulties you have and try to anticipate those you may yet encounter. Find a catalog with such devices, ie VNA (Visiting Nurses), Sears, etc. Then discuss them with your spouse, caretaker and your therapist or doctor- very important. I'll discuss more about this later under "Insurance." Check with your insurance Co or "Case Manager" before ordering anything. They can be very fussy about how and from whom to order items. Some examples follow: A.F.O. - Ankle Foot Orthosis, custom made. Helpful to battle against footdrop. Adjustable Tray Table Flexible Straws Speaker Phone "Bunny Boots" - or "Deluxe MultiBoot" ( 800-225-2610 ) also helpful for footdrop. Easy Writer - appliance to hold pencil. Hoyer Lift - Transfer from bed to wheelchair and vice versa. Lift Chair - Elevates you to a near standing position and reclines by elec control. Light Touch - a device that turns on a light by touching any metal part of a lamp. Gait/Ranger Belt - to help caretaker lift and transfer. Safety Frame - for toilet. Toilet Seat Extension - Elevates seat several inches, allowing easier "departure." Trapeze - Triangular bar suspended above the bed to help you move yourself in bed. Walker - Aluminum, lightweight. A Walker Tray - or pouch to carry items. Wide Mouth Cups - or cups with a cut out for nose to allow drinking with minimal raising of chin. Hoyer Lift - helps getting from bed to wheelchair and vice versa. Hospital bed - An electronically operated bed capable of various positions. Physical Therapy (PT) makes an important contribution to the care of ALS patients. The role of the physical therapist is to evaluate the patient's physical abilities, design a PT plan, provide therapy, including active (you do the work) and passive (someone else does the work) activities as well as teaching this to patient and family or caretakers. The therapy is usually designed to maximize your functional ability. The difficult part is making sure the therapist is aware of this disease process and the goals for ALS patients. Generally speaking these goals are different from the majority of their patients, ie hip and knee replacements, strokes, etc. In those cases the loss of function is fixed or expected to improve and the therapist gives them a plan to strengthen available muscles to compensate for what is lost. It is very difficult to explain to the unfamiliar (therapists, insurance companies, etc.) that deterioration, not progress, is expected with ALS and our goals are to preserve as much strength and Range of Motion for as long as possible. The generic criteria insurance companies may use to approve PT is often "continuing improvement." You may remind them that foot drop and other problems may develop as a result of inadequate PT, which presents a safety issue. This may provide enough justification. The progression of our symptoms will vary and our needs may be vastly different after only a few weeks. If you aren't getting ongoing PT or periodic re- evaluations your needs may not be met. An effective therapist will discuss any changes in your status and adjust your PT plan and orthotics to meet your changing needs. They may advise on the need for various appliances and aides, ie walkers, AFO's. Occupational Therapy may also advise on appliances and orthotics, some overlap is normal. Occupational Therapy (OT) focuses on assisting you to perform necessary everyday activities, often with an emphasis on use of hands. They are usually very helpful in identifying and solving problems having to do with eating, dressing, bathing, etc. They may be able to get you a catalog of appliances and aides; go back and look periodically. Again, because this disease is not very familiar to most people, it is also a good idea to discuss the changing needs and ask about periodic contact to make necessary adjustments. Speech Therapy can evaluate both speech and swallowing as problems arise. They can explain why you may have trouble making certain sounds and offer suggestions to get the most out of what you've got. Similarly, they'll evaluate your swallowing problems, break down the process and show you methods of more effectively handling liquids and solids. Insurance can be a blessing and a curse. First, learn everything you can about your policy. For example, number of Home Health Visits per year, ie PT, OT, Treatments, etc. Some policies may say 60 days, meaning any 60 individual days throughout the year. Another may say 60 days, meaning 60 consecutive days, ie June 1st through July 30. Know spending limits, deductibles and the anniversary date, when you begin a new spending year. Know your policy! It will help adjust your expectations and better equip you to deal with disputes. Second, check with your insurance company or Case Manager before purchasing any medical items. If they cover specific items, they'll probably have restrictions. They may only buy from a certain company or rent some items rather than buy. Remember, try to be practical in your requests. If you want every little item, you may reach your spending limit with unnecessary items and not be able to afford important items later. Try to avoid frivolous requests. Insurance companies and therapists have a pretty good idea what is reasonable, but if they don't agree with your doctor's prescribed care, let him, or her, know. Your Physician beyond the obvious, plays a key role in setting many processes into motion. Before each doctor appointment, know your health status and be prepared with questions, requests and any new problems. Having been on the other side of that fence, I know most patients I've seen have had questions at one time or another until they walked into the office. For some reason its easy to get distracted, right at the wrong time. Sometimes I'd be able to guess or say something that reminded them, sometimes not. Either way, the things forgotten are often the most important. So, make a list and discuss the issues with your spouse or caretaker ahead of time. My wife comes up with all the important questions. If you're prepared and concise, your doctor will appreciate it and you'll get much more out of the visit. He or she will be the one determining the scope of your care. This may include PT, OT, a Wheelchair, Letters of Disability, Hospice as well as prescribing everything from drugs to remodelling a bathroom to accommodate your health needs, which may then qualify as a tax deduction. So the better you can communicate your situation to your doctor, the better he or she can help provide for your needs. Then if your insurance company doesn't seem to agree with or "approve" what you and your doctor have planned, let your doctor know. Either wait until your next appointment or, and this is important, call the "shaker and mover" in the office, usually the Nurse or Office Manager. She, or he, is the one who most frequently deals directly with the insurance companies for the doctor. Find out who they are and make friends. Having them prepared to respond to an issue will help immensely. If it is a covered service, it can often be worked out. Physicians and their staffs, unfortunately, are very used to these type of dealings. Your Spouse and immediate family will experience the shock and devastation of this illness to an extreme degree comparable to your own. Too often the support from outside family and friends is focused solely on the patient, while the spouse is overlooked. Our spouses meanwhile, are forced to take on more responsibilities at home, continue working and then care for us. We need to remind ourselves, our spouses and our families of this. We have to make sure that our spouses' needs are met. For example, visitors need to help out, not add to host responsibilities, our spouses need to be able to get away and maintain other relationships, and they need to have access to local support services. Home Health Aides may be necessary at some point. Early planning may help locate the type of person you'll want in your house during the hours you need them there, more affordably and allow more effective training while you're still able to move and communicate. Specific Symptoms such as spasticity, cramps, emotional instability, excessive salivation, bowel trouble, etc., may be treated in a variety of ways. What works for one person may not for another, or may even be harmful. One size does not fit all. For example, excessive salivation may be controlled with one simple "antichlolinergic" drug with one person, while another may not respond to multiple drugs and require irradiation of their salivary glands. I encourage you to work closely with your doctor. Many symptoms may be "managed" rather than completely eradicated. It's important that you accurately describe the symptoms you experience. Then discuss with your doctor the goals of the treatment and follow the instructions you're given. If the problem isn't adequately controlled, hasn't met your goals, you've done your part and the ball is back in your doctor's court. Don't be passive, ask about other options, be persistent, offer ideas you may have heard about, but don't "live with it" unnecessarily. My Personal Philosophy is one of optimism, trying to be positive and productive in the face of this cowardly disease that seems to do everything it can to dismantle our humanity. I firmly believe that state of mind plays an important role in the course of this disease. The opinions that follow are conclusions I have drawn based on a combination of facts and speculation. First, and most apparent, is basic physiology. If you stop using a normal healthy muscle or muscles, they will become weak and wither away. This is termed "disuse atrophy." If you've ever had a cast on an arm or leg for weeks to months, you probably know what I'm describing. The limb is weak and takes a while to get back to normal, through using and rebuilding muscles. With ALS, I've found that the symptoms can vary from day to day, sometimes hour to hour. You may lose hand strength temporarily and later notice it has returned. Therefore, try to remain persistent in attempting to use these weakened muscles, short of fatigue or frustration. If we get depressed we're generally less active. If we're less active and don't re-challenge these weakened muscles, over time we risk some degree of disuse atrophy. This adds to the unavoidable weakness directly due to the ALS. This makes us weaker and, in turn, we may experience more depression and inactivity, more weakness, more depression . . . Resulting in acceleration of the disease. On the other hand, if you can somehow stay as positive and as physically active as possible in spite of this disease, drawing on the support of family & friends, I believe you will simply retain more functional strength, thus improving both the quality and length of your life. I apply this concept to movement as well as speech and swallowing. Of course, always with prudence and safety in mind. I fully admit that it's easier said than done. Some of us have the added burden of emotional swings on top of all the expected stresses. We sometimes hurt those we love and need the most. It's important not to let these outbursts create depression or cause withdrawal. I try to explain to those around me that it is sometimes difficult for me to control my emotions. Then, if I say something I regret, I apologize as soon as I get over it and move on. Second is a concept I've pondered that is admittedly more imaginative speculation than science. I've read about long term ALS survivors, (20+ years), who claim their survival is the result of a life change, which invariably involves a change in their behavior. They describe events such as "accepting the disease and being at peace," encountering an inspirational book or person who "changes" them, or accepting a new or renewed set of religious beliefs. Although there remains a lot that is unknown about ALS, investigators suspect it arises through a cascade of events in the Central Nervous System involving chemical mediators, possibly Glutamate, Superoxide Dismutase, Free Radicals or abnormal neurofilaments. We don't know where this cascade of chemical events begins or ends. Can behavior itself affect ALS? Different behaviors involve different neurons or neurotransmitters. Can different behavior patterns, like anger or contentment, produce different mediators in the brain that influence ALS? Many intelligent men of science and medicine may explain these survivors as a small number of inevitable survivors, reason unknown, who attribute their remarkable survival to something that fits their belief system. I readily admit that this may be true. But what if behavior can influence ALS? We once thought the world was flat, blood letting would cure most disease and that surgeons didn't need to wear gloves or wash their hands before performing surgery. Unfortunately, this just raises more questions and provides no answers. I doubt that we'll know the answer any time soon. Nonetheless, we still have some long term survivors with very compelling stories. We have little to go on, but perhaps one common thread throughout most of these accounts - they all seem to reflect a positive, peaceful attitude. It is very difficult to do research involving subjective human feelings or emotions. "Emotions?" Hmmm, that sounds strangely familiar when talking about ALS. So, I say there's nothing to lose and everything to gain by keeping a positive attitude. At the very worst, it will enrich our lives and make us more pleasant to be around. And it may . . . ? Loose Ends: 1) Last Will and Testament 2) Insurance Beneficiaries 3) Names on Deeds and Titles 4) Funeral/Burial Arrangements 5) Living Will Consider reviewing and making decisions on these issues at some point early enough when you're able to communicate and not distracted by physical limitations. They aren't very pleasant topics, but so very important in order to see that things are done, and your loved ones treated, the way you wish. You may not feel ready to make "final" decisions or are concerned about changing your mind later. Its much easier to modify than to create, especially during periods of critical health. For example in writing a Living Will, you indicate your wishes regarding things like being on a ventilator in the event your muscles of repiration fail and the degree of resuscitation in the event your heart or blood pressure begin to fail. Let's say today you choose to not be put on a ventilator and opt for no "Heroic Measures" (elec shock, powerful drugs to maintain heart beat & blood pressure), instead request only drugs to keep you comfortable. Later you may change your mind and choose to accept a ventilator. All you need to do is indicate this and its changed, regardless of what has been previously written, signed & witnessed. Whether you're at home with Hospice or in a hospital, you'll be asked and offered many things and have ample opportunity to make your wishes known. Beware of "snake oil." I believe in keeping an open mind and considering every conceivable form of treatment in the case of terminal illnesses. Everything is fair game; vitamins, inherent mental healing powers, prayer, touch healing, herbal therapy and many others. However, "look before you leap." Jumping in with both feet may be risky, disappointing and costly. Unfortunately, there are many people who deliberately, and probably many more who with honorable intentions, seek desperate, terminally ill people to whom to sell their product(s). Be wary of those who boast confidence or a "sure cure," especially when it can only be had at a considerable cost. Be an informed consumer. Ask for information on how it works, risks, side effects, etc. These people can be very convincing. Look to other unbiased sources for information on the subject and, of course, discuss it with your doctor. Most doctors are very aware of the limitations of medicine, the slow plodding pace of the "scientific method" used in medical research and the small number of diseases that are actually curable. Advances in medicine have often been "discovered" by scientists years, even centuries, after use by the "lay public." In medieval times some cultures would treat their sickly women by driving a nail through an apple, removing it after a couple days and letting the woman eat the apple. Now, of course, we understand Iron-deficiency Anemia and treat it with iron tablets instead of waiting for an iron nail to oxidize in a moist apple. Keep your mind open as well as active and discriminating. Hospice is a multidisciplinary team approach to the care of terminally ill patients. Nurses, Social Workers, Pharmacists, specially trained Home Health Aides and "Sitters" work together to provide comfort and relief to terminally ill patients and their families during the last months of life. Their services adapt to almost any envviornment; hopitals, nursing homes, Hospice Centers or at home. They are extremely dedicated and very good at what they do. ===== = The remaining sections of this wonderful document will be published in = the next issue of the Digest. rgds,bro ===== === end of als 231 === ALS Association (National Office) 21021 Ventura Boulevard, Suite 321 Woodland Hills, CA 91364 USA TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) E-M eajc27b@prodigy.com ALS Society of Canada 220 - 6 Adelaide Street East Toronto, Ontario, M5C 1H6 CANADA TEL 416-362-0269 TEL 800-267-4ALS (toll-free in Canada) FAX 416-362-0414 E-M alssoc@inforamp.net