=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#78, 06 January 1994) == == == == ----- amyotrophic lateral sclerosis (ALS) == == ----- motor neurone disease (MND) == == ----- Lou Gehrig's disease == == ----- == == 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. Currently there are == == 190+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest (not a peer reviewed journal, and not edited == == by an MD) subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== (1) ===== a note from the UK ========== >From : Tony McDonough Date : Wed, 5 Jan 94 13:18:00 GMT Subject: Effective approach? Mike, Let me introduce myself. My name is Tony McDonough and I have had ALS for 18 months. I reside in the UK and have been involved with a Riluzole trial for the last 6 months. I saw your article with regard to feeding tubes and I would like to ask you some further questions if I may. 1. I listened to a presentation from a research group in the UK who worked with ALS patients who had gastrostomies and they maintained that patients should not lose more than 10% body weight due to the actual disease. They also observed that some patients went back to normal body weight some months after using this method of feeding. Did you find this to be true ? Also what was your experience of body weight loss/gain from the time of diagnosis to the present day. Also how did you feel with regard to energy, tiredness and feel good factor before and after ? 2. The method of feeding through the neck is not common in the UK from what I can see. The most common is a peg in the stomach which is recommended here. I noted a few comments about ulcers, leaking and other possible problems but this was not the case according to the UK team. I am trying to obtain a copy of this research. Are these problems commonplace in the US? 3. I have done quite a lot of reading and listening with regard to ALS. At present I can still walk and drive, the weakness being in my arms and shoulders. I am also experiencing swallowing problems. My approach on this is as follows and I would appreciate any comments: a) Continue with riluzole trial b) Have a feeding tube fitted to keep up the body weight. c) Research a little more into amino acids to see if there is any mileage for me in attempting to balance the matabolism. I am thinking here that this metabolic imbalance is the primary reason for nerve damage. I am awaiting information from Tyson associates. I view this as very important as it strikes me that we need to be be able to regulary measure for balance. Without this measurement how do we know that targetted treatment is effective or not? d) Also consider using L-theronine as a symptom reliever e) Longer term if indeed the good Lord allows me to survive, Nerve growth factor implant looks to be encouraging. f) My intention is to keep working as long as possible. Also I think the drive for getting out of bed in the morning is important as is the desire to feel important not to the mention the social contact. Regards Tony (2) ===== sample listing of nursing references relating to ALS ========== Your request for "CINAHL-EASY" is being processed... Connecting to the CINAHL database ... This CINAHL database contains citations published between 1987 - 1993 from nursing and allied health literature indexed by CINAHL Information Systems. (c) Copyright 1993, CINAHL Information Systems There are 162,814 documents in this information base The last update was performed on Thursday December 30, 1993 Searching ENTIRE database Searching for TERM = AMYOTROPHIC* ============================================== Title : Motor neurone disease: a progressive disease : requiring a coordinated approach Author : Thomas S Source : PROF NURSE 1993 Jun; 8(9): 583-5 (12 ref) ============================================== Title : ALS -- decision making under uncertainty: a positive : approach Author : Baumann A Source : AXON 1991 Dec; 13(2): 41-3 (6 ref 2 bib) ============================================== Title : Hope as a mode of coping in amyotrophic lateral sclerosis Author : Kim TS Source : J NEUROSCI NURS 1989 Dec; 21(6): 342-7 (8 ref 11 bib) ============================================== Title : Respiratory management of amyotrophic lateral sclerosis Author : Taft JM Source : J AM ACAD PHYSICIAN ASSIST 1990 Mar-Apr; 3(2): 131-6 (16 ref) ============================================== Title : George wasn't ready to die Author : Bay EJ Source : NURSING 1988 Aug; 18(8): 52-3 ============================================== Title : Using phonation time to estimate vital capacity in : amyotrophic lateral sclerosis Author : Hillel AD;Yorkston K;Miller RM Source : ARCH PHYS MED REHABIL 1989 Aug; 70(8): 618-20 (13 ref) ============================================== Title : A life of the mind... amyotrophic lateral sclerosis... : computer as a means of communication Author : Beckham J Source : HOME HEALTHC NURSE 1983 Nov-Dec; 1(2): 58-9 ============================================== Title : Patients' perspectives of the role of care providers : in amyotrophic lateral sclerosis Author : Beisecker AE;Cobb AK;Ziegler DK Source : ARCH NEUROL 1988 May; 45(5): 553-6 (24 ref) ============================================== Title : Results of resistance exercise on a patient with : amyotrophic lateral sclerosis: a case report Author : Bohannon RW Source : PHYS THER 1983 Jun; 63(6): 965-8 (9 ref) =============================================== Title : Amyotrophic lateral sclerosis... technical nursing : in a home setting Author : Beebe WK;Gomez K Source : HOME HEALTHC NURSE 1985 May-Jun; 3(3): 8-14, 16-7 (5 ref) =============================================== Title : Amyotrophic lateral sclerosis: psychosocial interventions : for patients and their families Author : Sebring DL;Moglia P Source : HEALTH SOC WORK 1987 Spring; 12(2): 113-20 (9 ref) =============================================== Title : Amyotrophic lateral sclerosis: a challenge for constant : adaptation Author : Stone N Source : J NEUROSCI NURS 1987 Jun; 19(3): 166-73 (18 ref) =============================================== Title : Amyotrophic lateral sclerosis: a comprehensive : rehabilitation approach Author : Janiszewski DW;Caroscio JT;Wisham LH Source : ARCH PHYS MED REHABIL 1983 Jul; 64(7): 304-7 (8 ref) =============================================== Title : Maintaining adequate nutrition and hydration in : the dysphagic ALS patient Author : Welnetz K Source : CAN NURSE 1983 Mar; 79(3): 30-4 (21 ref) =============================================== Title : In Lynne's eyes... amyotrophic lateral sclerosis (ALS) Author : Woy D Source : NURSING 1987 Nov; 17(11): 152 =============================================== Title : Jim's new world... amyotrophic lateral sclerosis... : transfer to our nursing home Author : Knapp MT Source : NURSING 1987 Jul; 17(7): 96 =============================================== Title : The amyotrophic lateral sclerosis client and the issues : surrounding mechanical ventilation Author : Farrell AM;Obert-Thorn ME Source : HOLISTIC NURS PRACT 1993 Apr; 7(3): 1-7 (5 ref) =============================================== Title : Support that prolongs life: ventilation in motor : neurone disease... or amyotrophic lateral sclerosis (ALS) Author : Thomas S Source : PROF NURSE 1993 Jul; 8(10): 656-9 (9 ref) =============================================== Title : Laryngeal diversion in the treatment of intractable : aspiration in motor neuron disease Author : Carter GT;Johnson ER;Bonekat HW;Lieberman JS Source : ARCH PHYS MED REHABIL 1992 Jul; 73(7): 680-2 (12 ref) =============================================== Title : Coping with life on a portable ventilator Author : Charles RA Source : HOME HEALTHC NURSE 1985 Mar-Apr; 3(2): 27-30 =============================================== Title : When George wanted to take charge, we decided to let him Author : Cammermeyer M;Samonds RJ Source : NURSING 1983 May; 13(5): 51-3 =============================================== Title : ALS: a case study caring for ALS patients Author : Preikschas J Source : RNABC NEWS 1987 Jan-Feb; 19(1): 17-8 =============================================== Title : PFT Corner #30. Evaluation of respiratory muscle : weakness: is spirometry enough? Author : Brown RA;doPico GA Source : RESPIR CARE 1988 May; 33(5): 368-71 (6 ref) =============================================== Title : From Maine to Mexico in a van: odyssey of an ALS patient Author : Stetson P Source : RESPIR THER 1986 Jan-Feb; 16(1): 25-6, 27 =============================================== Title : When motor nerves die... amyotrophic lateral sclerosis (ALS) Author : Lenox AC Source : AM J NURS 1983 Apr; 83(4): 540-6 (3 ref) =============================================== Title : Anna: fully alive in the face of death Author : Bergmann D Source : J CHRIST NURS 1992 Winter; 9(1): 16-9 =============================================== Title : Peptide hormone injections improve muscle strength in : ALS patients Source : HOME HEALTHC NURSE 1984 Jan-Feb; 2(1): 14 =============================================== Title : Neurological nursing: motor neurone disease... amyotrophic : lateral sclerosis Author : Bingham E Source : NURS TIMES 1990 May 9-15; 86(19): 28-31 =============================================== Title : Nursing care of the long-term ALS patient Author : LaRocco SA;Tu LL Source : J PRACT NURS 1983 Feb; 33(2): 16-21 (11 ref) =============================================== Title : Two elderly patients with progressive muscular weakness Author : Carlucci GJ;Rump P Source : PHYSICIAN ASSIST 1990 Jun; 14(6): 57-8, 60, 63-4 : passim (5 ref) =============================================== Title : Amyotrophic lateral sclerosis Author : Ho L;Connors J Source : CAN NURSE 1983 Mar; 79(3): 35 (3 ref) =============================================== Title : Motor neurone disease Author : Evans R;Lewis J Source : NURSING (LOND) 1989 Jan; 3(33): 9-11 (21 ref 4 bib) =============================================== Title : MND: a personal profile... motor neurone disease Author : Peters B Source : AUST NURSES J 1989 Mar; 18(8): 8-10 (12 ref) =============================================== Title : Nursing theory and nursing process: Orem's theory : in practice Author : Taylor SG Source : NURS SCI Q 1988 Aug; 1(3): 111-9 (4 ref) =============================================== Title : Spirituality and the ALS patient Author : Roche J Source : REHABIL NURS 1989 May-Jun; 14(3): 139-41 (6 bib) =============================================== Title : A comparison of the prevalence of pressure sores in : hospitalized ALS and MS patients Author : Raney JP Source : DECUBITUS 1989 May; 2(2): 48-9 =============================================== Title : "Once a coach... always a coach": ALS patient "coaches" : students through home health clinicals... Amyotrophic : Lateral Sclerosis Author : Carpenter J Source : J PRACT NURS 1988 Dec; 38(4): 32-3 =============================================== Title : Physical therapy management of patients with ALS Author : Thibodeau LM;Andres PL Source : CLIN MANAGE PHYS THER 1987 Jul-Aug; 7(4): 6, 8-9 (9 bib) =============================================== Title : Gait patterns in patients with amyotrophic lateral sclerosis Author : Goldfarb BJ;Simon SR Source : ARCH PHYS MED REHABIL 1984 Feb; 65(2): 61-5 (18 ref) =============================================== Title : Aquatic therapy for an ALS patient... WETSwim program Author : Johnson CR Source : AM J OCCUP THER 1988 Feb; 42(2): 115-20 (7 ref) =============================================== Title : Choices: moral and ethical issues involved with life- : support equipment when used in the home... personal : experience Author : Lemieux GG Source : HOME HEALTHC NURSE 1984 Jan-Feb; 2(1): 12-4 =============================================== Title : Helping Joanne die with dignity: a nursing profile : in courage Author : Murphy P Source : NURSING 1990 Sep; 20(9): 44-9 =============================================== Title : Case report: the development of a feeding harness : for an ALS patient Author : Takai VL Source : AM J OCCUP THER 1986 May; 40(5): 359-61 (5 bib) =============================================== Title : Gaining on Gehrig's disease Author : Clark M;Witherspoon D Source : NEWSWEEK 1983 Aug 15; 102(7): 49 =============================================== Title : The diagnosis and management of neuromuscular diseases : causing respiratory failure Author : Kelly BJ;Luce JM Source : CHEST 1991 Jun; 99(6): 1485-94 (49 ref) =============================================== Title : Getting to know Gary Author : Polito J Source : NURSING 1993 Sep; 23(9): 112 =============================================== Title : ALS and aging: a case study in autonomy and control Author : Power DJ;Craven RF Source : IMAGE 1983 Winter; 15(1): 22-5 (17 ref) =============================================== Title : Administering pain medications for a terminal patient Author : Makielski M;Broom C Source : DCCN 1992 May-Jun; 11(3): 157-61 (2 ref) =============================================== Title : Practical tips for patients with A.L.S. Author : Rabin D Source : NURSING 1986 Feb; 16(2): 47-9 =============================================== Title : Making an ethical decision in the home setting: the : case of Stan Author : Erlen JA;Burger AM;Tesone L Source : HOME HEALTHC NURSE 1990 Nov-Dec; 8(6): 30-4 (9 ref) =============================================== Title : Esthetic inquiry... practice of photography and the : analysis of Author : Highley B;Ferentz T Source : NLN PUBL 1988 #15-2233: 111-39 (8 ref 52 bib) =============================================== Title : Factors influencing ethical decision making in the : home setting Author : Burger AM;Erlen JA;Tesone L Source : HOME HEALTHC NURSE 1992 Mar-Apr; 10(2): 16-20 (9 ref) =============================================== Title : ALS: clearing up the confusion about this paralytic : disease can lead to better care of the patient Author : Ashford W Source : RNABC NEWS 1987 Jan-Feb; 19(1): 14-5 =============================================== Title : Battling with motor neurone disease Author : Wilson B Source : NZ NURS J 1982 Jul; 75(7): 5, 7 (1 ref) =============================================== == end of als 78 ==