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Beyond The Limits of Myasthenia Gravis!by Clete GressA "Self Portrait of my Life" with Myasthenia! |
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Our Comment Book I'd like to know what you think about my book or my web site. Please, leave your comments in this public Comment Log so I can share your thoughts with other visitors. |
CommentsI was just diagnosed on April 8, 2010. A day before my 44th birthday. I am so thankful to your day for writing this book and I appreciate him sharing it and for you continuing in sharing it. It gives me hope to know that it is up to me and my attitude on which kind of day that I want to have and this will greatly enrich my life. What a blessing to have someone who has experienced this before me -- choose to share his experience and allow me to learn from his lessons. Thank you and I thank him. Tammy L. from Fl
CommentsI was just diagnosed on April 8, 2010. A day before my 44th birthday. I am so thankful to your day for writing this book and I appreciate him sharing it and for you continuing in sharing it. It gives me hope to know that it is up to me and my attitude on which kind of day that I want to have and this will greatly enrich my life. What a blessing to have someone who has experienced this before me -- choose to share his experience and allow me to learn from his lessons. Thank you and I thank him. Tammy L. from Fl
CommentsI was just diagnosed on April 8, 2010. A day before my 44th birthday. I am so thankful to your day for writing this book and I appreciate him sharing it and for you continuing in sharing it. It gives me hope to know that it is up to me and my attitude on which kind of day that I want to have and this will greatly enrich my life. What a blessing to have someone who has experienced this before me -- choose to share his experience and allow me to learn from his lessons. Thank you and I thank him. Tammy L. from Fl
Commentsi would be interested to know if anybody has heard of a photographer who has mg, my husband has just been told he has it and is devastated, how long does it take most people to get "the thing" under control? i read your book to my husband and am now hoping we can put some of the advice into practice
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CommentsSome interesting concepts to try out. Sorry that Clete isn't still here on earth to discuss some of his ideas in greater detail. Thanks for maintaining the site. Joy H.
CommentsCletes book helped me through a very tough time in my MG struggle. I never told him Thank you and wish I had done so. ''Beyond the Limits'' helped me learn to live with the unpredictable effects of MG and gave me some very helpful coping tools. Keep up the good work. Clete helped a lot of people by writing his story. L. King
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CommentsMy name is Chris, my partner Paul has been unwell for approx the past 4 months, I thought it was a stroke. Following bullying from me as he is stubbon, I was scared, he has sought medical advice and guess wot he has MG. 4 weeks ago he started medication and it is not working, a 59 year old male is now going into hospital tomorrow to try and get the condition under control, a very scared man. He has never had anything wrong with him before, he runs a successfuly business, plus we have a pub restaurant he employs 60 staff who he feels all rely on him to provide them with a job to support their own families....sound familiar. Reading your dads words confirms in me wot I have felt, that this MG did not come from nowhere, things said by staff at a meeting approx 4 months ago left him devistated, it was after that week that his simptoms started...they implied they felt let down by him. He thinks he is not coming out of the hospital, I am ecstatic to have found your dads book, I hope it will help him through the coming months, it confirms I am not mad and describes Paul as if your father knew him. A man who supresses emotions, if he keeps everyone out he cant get hurt, I have always felt something happened long ago to make him who he is, feels he has to be there for everyone, works extremely hard, both mentally and physically and has the strength your father spoke about....wot a revelation, thank you. It is also interesting that his father had the condition which came on in later life around the time Pauls mother was diagnosed with cancer of the mouth !
CommentsThank you for this moving book it has inspired me made me realize our mind plays such an important part in are lives. We take for granted so many little things. My hope is I can with Gods help and your book reach my husband. First Schizophrenia in 1979. Than in 2008 Myasthenia Gravis both took at least a couple of years to find out. Probably the hardest of the two is seeing a MG crisis. Seeing him get past it feeling good and than falling down after a year of some remission. With the help of God and your book we will make it Thanks again. Jim and Loureen Flowers Euclid, Ohio 216-732-8162
CommentsForum ______ de l'Association des amis des Myasthéniques du Maroc ://myasthenie.forumactif.com/des-amis-face-la-myasthnie-f8/ http://www.rezoweb.com/forum/sante/myastheniagravi.shtml ************ ASSOCIATION DES AMIS DES MYASTHENIQUES DU MAROC __________________________________________________ ELECTIONS COMMUNALES, AUX CADRES ET CONSEILLERS DE SM LE ROI MOHAMMED VI Un plaidoyer pour une réforme de société dans le sens de la justice sociale. Ecrit pour édifier les élus sur leur devoir d’écoute, de représentation et de défense des électeurs Sollicitations respectueuses pour défiscaliser le parcours diagnostic des malades, en abrogeant les Taxes de Douane et TVA sur les médicaments, le circuit des soins et ses intrants, sans discrimination entre les pathologies ni les tares. APPEL AUX CADRES ET CONSEILLERS DE SM LE ROI, AUX MINISTRES ET DÉPUTÉS. HONORABLES ELUS Que signifient ces taxes sur les soins ? Ce sont des impôts indirects sur les maladies ! Mais aussi un poids que ne paient que les malades ! Surtout s’ils ne sont pas sécurisés sociaux ! Pire, un frein à la modernisation des structures de santé hospitalières, de tous les secteurs de santé ! Pis encore, pour la minorité des malades assurés, un poids pour leurs Caisses Mutuelles et de Sécurité Sociale ! Alors il faut les exonérer ! Caisses, hôpitaux et malades découverts, car les malades n’ont pas à payer de taxes pour les virus qu’ils attrapent et les diminutions de confort, de santé et d’activité ou de revenue auxquelles les maladies les obligent ! Est-ce juste de payer pour les amoindrissements définitifs ou passagers, que les maladies occurrent ? Est-ce clair ? REPRÉSENTANTS DU PEUPLE, Vous nous passerez, l’outrecuidance de vouloir vous informer sans relâche et de vous remercier de ce qui est nouvellement acquis, directement et en public, sans passer par les canaux épistolaires discrétionnaires et associatifs habituels ! La raison en est de servir la conscience populaire et de changer le laxisme et les dénigrements, en s’adressant à vous tout en informant cette base, concernée, ces électeurs qui font confiances à leurs leaders et qui votent pour eux ! Ces notions sont loin d’être opportunistes et populistes, puisque nous occupant d’une association et d’un cabinet médical, il ne nous est pas loisible de porter plusieurs casquettes et surtout nous voulons garder cette association, éloignée de tout struggle politiciens, mais proche de tous les programmes de tous les candidats, celui de servir la santé des citoyens et de la communauté ! Ainsi nous nous éloignons volontairement des slogans tels que apprêtés et exploités par certains courants, qui en font de leur bouillabaisse, une ‘’culture culinaire nouvelle’’. Nous préférons de notre part saluer ce qui est fait par la gratitude et anticiper l’avenir par l’espérance. Car il reste autour de nous, sur le plan de la santé, de l’accès aux soins, tant de choses à faire ! L’ultime but est de fructifier le concours et l’information des premiers bénéficiaires, les citoyens et d’éveiller à nos besoins, les responsables des administrations, les réglementations qu’ils appliquent et qui sont antipopulaires, les législations qui les régulent ou les maintiennent aux dépens des malades, chers électeurs ! VOICI NOTRE REQUÊTE Ceci est un plaidoyer. Notre quête de réforme des soins, s’active depuis des années et milite pour la suppression totale et générale des taxes de douanes et de la TVA sur les médicaments et leurs intrants, sans discriminations entre les tares ! Ni faux fuyants ni atermoiements, pour remplacer demain, ces impôts indirects pernicieux par d’autres, plus pervers, quand tomberont les taxes douanières dans le monde entier. Nous décrions à qui veut bien l’entendre, et dénonçons ces impôts sur les souffrances. Nous condamnons ces dimes et gabelles moyenâgeuses, qui exploitent ceux qui sont malades et seulement ceux qui souffrent, parce qu’ils sont malades ! D’où l’extrême perfidie, la cruauté de ces lois perverses qu’il faut bannir et de ces exactions qu’il faut lever pour rendre sa dignité à l’homme malade au lieu de l’exploiter ! Cette défiscalisation des peines et des douleurs, quelles qu’elles soient, par intelligence et par humanité, comme de par le droit évolué des personnes qui aiment leurs gens et leur pays est une nécessité vitale. Tant pour l’économie des caisses, des assurances et des mutuelles, que pour le chantier royal de l’INDH ! En effet, on ne conçoit pas de progrès humains sans santé, ni de productivité sans santé. Car la santé dessert la dignité de l’homme et contribue de manière basique et radicale à l’Initiative Nationale de Développement Humain ! Qui peut dire le contraire n’a qu’à nous répondre pour nous instruire, ou adhérer à notre quête pour la défendre, sans privilèges ni discrimination pour aller de l’avant auprès des Grands Décideurs ! Ne rien faire est également lâche ! L’attentisme incapable ou défaitiste, les tergiversations sournoises, ne desservent nullement la nation ni la prétendue politique de proximité ! EXHORTATIONS AUX DÉCIDEURS Dès lors, est-ce trop demander aux dirigeants, aux légistes, aux cadres, que de comprendre le bien de leur famille, de leurs électeurs et de leurs administrés ? Si on veut diminuer la souffrance et les handicaps, si on veut contribuer à élargir l’accès aux soins, pour tous, afin de les rendre matériellement plus abordables encore, il faut défiscaliser le circuit des soins de toutes les taxes. Nous ne parlons pas des autres charges et impôts sur les bénéfices ! Le rabattement espéré serait de l’ordre des 25 %, vingt pour cent en moins, sur chaque étape des soins, diagnostiques, analyses, radios et médicaments. Ce dégrèvement ‘’ miraculeux ‘’ en un seul temps et d’un seul tenant qui pour être efficace doit être large et général, viendra faciliter la santé pour tous ! Il ne s’agit pas d’un slogan électoral, notre Association s’en passe ! Il s’agit d’une morale civique dont l’action immédiate sera d’élargir le nombre des bénéficiaires de l’AMO, afin de mieux prescrire et de soigner le moins cher possible ! En agissant ainsi, nous attendons et espérons à l’occasion des prochaines fêtes fondatrices du pays, une annonce officielle de cet autre chantier de réformes que sont les soins et les médicaments. Nous espérons pouvoir faire œuvre utile de pédagogie, en intéressant les responsables au sort des Jeunes ! « La jeunesse, c’est avant tout une mentalité, un esprit, un mode de vie, une façon de penser et d’agir ». Jeunes et vieux, personnes et État, ont intérêt à développer à soigner leur santé de façon préventive et/ou médicale, la plus accessible et la plus large possible ! INVOCATIONS AUX RESPONSABLES Mesdames et messieurs les cadres proches des centres de décision, vous les conseillers de SM, ministres et députés, nous vous prions de rejoindre nos efforts collectifs, pour accompagner notre quête et diriger nos pas. Par votre biais, vous pouvez canaliser nos suggestions dans le meilleur des sens, afin de veiller sur leur aboutissement ultime et inéluctable ! Notre but est de vous voir agir pour le bien de tous les malades, vos électeurs, ces citoyens qui paient vos salaires et qui attendent de vous des actes citoyens, pour le bien de tous ! Nos appels à vos compétences, exhortations, nos rappels et nos réquisitoires, à l’adresse de vos personnes, itératifs, pressants et élargis depuis plus de six ans, ont une seule excuse. Nous militons en citoyens blessés dans un pays libre ! Ces ‘’harcèlements pudiques’’, faits d’articles de presse et d’une profusion de lettres à chaque occasion, sont les échos de nos souffrances, dans un pays démocratique ! Notre défense est d’agir, sans profit autre que celui de rendre l’accès aux soins plus juste et plus humanitaire ! Nous souhaitons vous concerner et vous mobiliser, avec nous, afin de quérir la plus haute instance décisionnelle du pays, pour le bien ultime de tous, de tous ceux qui souffrent en silence et sans défense ! Nous pensons, à l’AAMM et dans son réseau associatif, que notre éveil fondateur et modeste, n’a de mérite et n’a de chance de succès qu’en étant le plus largement fédérateur de toutes les énergies civiques et de toutes les consciences citoyennes. A commencer par celles des décideurs qui nous écoutent, avec abnégation et qui agissent déjà ! Leur récompense est dans la satisfaction de soi et en l’agrément de SM! ÉCOUTEZ LES CONSEILS ET LES DIRECTIVES DU ROI Les discours et les conseils enthousiastes de SM le Roi sont des signaux forts, des procédés didactiques. Des indicateurs, des pistes, des programmes pédagogiques, sinon initiatiques qu’il faut suivre. Appliquer ces ordonnances relève de la vertu et de l’intelligence ! Il est vital de suivre et de façon éveillée et responsable ces indications. Cette thérapie de circonstance, généreuse, fonde sa force sur le cœur conjugué de tout un chacun, envers autrui, qui dans le pays symbolise la Nation ! Ces vœux et ces propos, adressés aux forces jeunes du peuple, à l’occasion des fêtes duales de la Révolution et de la Jeunesse, ou du trône sont à prendre comme un ferment, une lumière, un viatique et un tremplin pour acquérir une autre énergie et des idées nouvelles ! Celles de la réforme de soi par soi, du changement du concept de la militance dirigé vers le don de soi ! La notion patriotique du sacrifice, sera désormais tournée vers la solidarité agissante envers nos alter egos. La cause noble patriotique n’est pas dans la seule lutte armée pour l’Indépendance ou le martyre de soi, mais elle est tournée vers le dépassement, le djihad sur soi et sur son milieu, de travail dans l’abnégation. La cité, la commune, la patrie pour le bien des concitoyens, donc de la nation ! Un seul sacrifice vous est demandé ! Le sacrifice de l’égoïsme ! Une volonté pour plus d’éthique, de justice, de tolérance et de devoirs envers les autres ! La notion de dévouement qui découle des sermons nationalistes nous dirige et nous responsabilise tout un chacun, envers notre prochain, et une fois de plus, envers notre propre milieu. On demande à chacun : « corrige toi toi-même et corrige ce qui est autour de toi ! » ! Donc de revoir les réglementations périmées, celles qui sont devenues antisociales, afin de les remplacer par des lois avenantes, des directives plus jeunes, plus ouvertes sur l’espace-temps démocratique qui seul défend et justifie notre engouement pour notre régime ancestral ! Régime dont la tradition, qui ne peut se couper des ses racines existentielles, est faite d’humanisme musulman et de référentiel atavique millénaire qui a su depuis l’antiquité, sauvegarder et défendre ses particularismes et son riche patrimoine ! Et c’est de ces sources claires que chacun d’entre vous, candidats aux urnes communales, tire et recueille aujourd’hui l’essence de son programme électoral ! Et c’est pour cela qu’en comptant vos voix, le 12 mai 2009, que vous ne devez pas oublier celles des silences ! Les voix de ceux qui sont morts, non pas pour la patrie, mais faute d’égard et de soins ! Les voix des incompris, des méprisés, des exclus et des malades, que des lois fiscales, jusque là inconsciemment prédatrices et vampires, éloignent des soins ! La dialectique qui est tracée dans les discours royaux, doit trouver son réservoir d’énergie, inépuisable, renouvelable et régénératrice en chacun d’entre-nous ! Spécialement en vous, candidat aux élections et vous cadres décideurs des administrations ! VOICI LES ATTENTES DES CITOYENS Les citoyens, bâtis et formés par l’éducation marocaine, non pas issus des produits du pétrole ou de quelque autre fortune minérale, doivent répondre loyalement, avec reconnaissance, à ceux qui les ont formés, les électeurs…Qui aujourd’hui est malade, qui en retraite, ou qui est mort, avec le cruel sentiment d’avoir été mal servis par les leurs ! Des hommes qui par leur travail, leur abnégation et leurs impôts ont payé leurs habits, leur pain et leurs études ! Hommes accomplis, élus d’aujourd’hui, vous avez été conçus, réalisés de par le travail simple sur soi-même, par la foi en soi, pour soi, mais surtout pour les autres, grâce à cette plèbe de marocains, vos parents. Ces hommes qui se sont satisfaits de peu, qui dans les usines, qui dans les champs, qui dans les tranchées, qui dans les sables, pour vous défendre et vous protéger ! Cette énergie inépuisable est un deal, un idéal, un programme ! En tout cas un crédit dont vous êtes les arrhes ! Sauvez votre passif en changeant les lois ringardes qui desservent le Peuple ! Changez ces lois iniques qui lèsent les plus opprimés par les charges fiscales infâmes qu’on impose sur leurs maladies ! Permettez-nous, permettez-leur d’évoluer ! Selon un axe, une boussole qui indique le Nord, qui nous est souvent synonyme de progrès ! Une direction en vue d’accéder à un horizon culturel, multiple et constamment ouvert et renouvelé afin d’accéder à plus de progrès et de satisfactions des nôtres. Ceci a un nom devenu galvaudé et tendancieux : la modernité ! C’est cela dans une espace quasi magnétique, dans un espace qui les attire, qui les repousse, qui les défié ou les menace. Cette tendance ce challenge, illustrent les capacités et les compétences de nos citoyens engagés sous la même bannière du développement et du progrès ! DES LORS, REFORMEZ LES LOIS INTÉRIEURES ! Sommes-nous émancipés des métropoles et des anciens colons, des parangons qui nous dictent des conduites morales, des réglementations exogènes, sous forme d’imprécations et de chantages ? Ou pas ? Pouvons-nous évoluer et moderniser nos lois, sans leurs curieuses manies, arrogantes, méprisantes et hautaines, qui nous importunent ? Pourtant, c’est notre volonté, notre droit, que de changer nos lois, les plus ringardes et de rénover les réglementations paresseuses. Ces lois figées et contraignantes, qui cryptées dans les vieux textes et les habitudes féodales, asservissent les malades et les exploitent. Telles des us tolérables, parce que entrées dans la pratique ! Des mœurs où la persécution est devenue coutumière et où la routine de la maltraitance n’afflige plus personne ! Ces réglementations fossiles sont paradoxales ! Sommes-nous obligés de les supporter encore, messieurs ? Ce syndrome sadomasochiste est connu des psychiatres. Le syndrome de Stockholm allie sexuellement la victime au bourreau qui la maltraite et dont elle s’éprend ! L’invective royale a déjà été formulée par feu SM Hassan II, pour décrier les lois ineptes et inadaptées dont « il faut changer la moitié » ! Il devient urgent de changer les lois impopulaires, les réglementations tordues, pour faciliter le changement des Marocains et leur faire reprendre confiance dans leur pays, dans leur évolution, dans leur défi de compter sur soi, pour se réformer et prospérer dans une région entravée par un conflit régional, dans un monde complexe, violent et difficile ! Nous voulons parler des lois nocives et néfastes qui pénalisent les malades et brident la santé de leurs proches ! L’humanitaire et la solidarité, le bénévolat comme le mécénat, commencera par le gommage de ces lois fumeuses et répressives. Leur danger surajouté réside dans leur impopularité ! Maintenir ces lois coloniales de l’individu est un frein pour le civisme bien compris ! Elles représentent l‘ennemi antisocial qu’il faut abattre. Ces réglementations anti humanitaires sont des butées et des obstacles sur le chemin de l’acquisition des valeurs, comme le civisme et le patriotisme ! Ces pénalité sur la santé repoussent et vexent les citoyens malades, cette strate du Peuple, la plus fragile! Les plaideurs les plus urgents à écouter sont les malades ! Ils réclament justice ! Une éthique raisonnable et claire : qu’on ne pénalise plus les souffrances ! Qu’on ne leur taxe plus leurs fièvres ni leurs douleurs ! Que les tares qu’ils portent ne soient point pénalisables ! Que leurs maladies, légères ou graves, ne demeurent point des motifs pour le fisc de prélèvements sur la santé ! Qu’ils ne soient plus les seuls sujets du Roi, qui soient bons à payer au fisc, des taxes sur leurs maladies ! Dès lors qu’on exonère à jamais le circuit des soins, des taxes inhérentes de Douane et de TVA sur les réactifs, les médicaments et la totalité de leurs intrants ! Ainsi donc, il paraît clair que parmi les réglementations honnies qui plombent la citoyenneté, ce sont celles-là mêmes qui touchent le domaine de la santé qui irritent le plus par leur manque d’éthique qui frise l’indécence ! Devenues retorses et inadaptées, elles clampent les droits et ternissement les enthousiasmes. Face aux défis sur soi et contre les dérives égoïstes locales et régionales, par amour des nôtres et de notre patrie, il faut conjurer les us qui sont devenues détestables et qui se trouvent dépassées dans l’ambiance que crée SM le Roi ! C’est cela l’objet de la Réforme qui viendra défiscaliser les maladies ! Ce ne sont pas les autres pays qui nous dicteront des lois pour faire évoluer notre royaume, mais nous qui montrerons aux autres, que l’humanitaire et la solidarité agissante, les droits humains, font partie de nos valeurs et que nous pouvons les exporter et non subir leurs imprécations exogènes, si peu diplomatiques ! Comme il ne faut pas se cloitrer et se figer sur les seuls dossiers vitaux, mais interminables, entre voisins, pour se détourner de ce domaine, fort prisé du social. Il est autrement plus sécuritaire d’apporter les progrès idoines, que nécessitent notre communauté, dans notre propre pays, afin de réparer les dols et les fractures sociales que tout pays observe ! Et que ça serve d’exemple aux autres, même s’ils sont plus riches ! POUR RÉALISEZ NOS ESPOIRS C’est cet esprit de dépassement que nous retenons de ces journées de gloire, d’élections et d’expression de la démocratie. L’esprit nouveau qu’insuffle et symbolise la Révolution du Roi et du Peuple est déjà là. Il nous interpelle pour agir ! Les citoyens responsabilisés par les nouvelles formules du Pouvoir et du Droit, ont besoin de concepts salvateurs, mais aussi de défis à remporter, qui leur referont prendre confiance dans leur pays et dans son nécessaire devoir d’amour ! La confiance, l’équité, la dignité sauvegardée, c’est cela la nourriture qui renforce le patriotisme. L’esprit de défense et de solidarité, la culture d’autrui, sont les bases de l’amour du pays et de ses sacralités ! Il suffit de symboles sociaux, positifs et forts, pour conquérir plus de cœurs. A titre d’exemple celui qui nous tient à cœur ! Une réforme, comme celle espérée des Médicaments et des Soins ! POUR CONSOLIDER LES DROITS ET LE POUVOIR PAR LE CIVISME La réforme attendue est une mesure courageuse, une initiative régalienne, un autre projet de société, basé sur le respect des plus affaiblis ! De telles mesures de compassion et de mansuétude, accompagnatrices des prouesses économiques ineffables déjà tracées, seront utiles pour frapper l’imaginaire des familles et faire de l’espoir et des droits des malades une conquête nouvelle pour un concept novateur. Une dynamique contre le reliquat de déprime, de défiance, face au reste de morosité, qui inhibe la société et frappe sans pitié ni horizons ouvrir, les plus jeunes ! L’espoir en soi et en autrui, ce nantissement productif en la jeunesse pour tous, est une valeur civique communautaire de plus dans l’ego et le caractère des Marocains. Veiller sur leurs vieux et leurs malades, leurs parents enfin, sera, s’il est cultivé avec art, science et confiance, un ferment de mieux, capable de revitaliser les consciences et de déterminer chez tous, plus de confiance dans leur pays, plus d’amour pour lui. Plus de crédit, de ressource et d’éveil des électeurs, pour plus de démocratie et de confiance dans leurs pays, ses cadres et ses élus ! Dr Idrissi My Ahmed, Président de l’AAMM Kénitra, le 11 JUILLET 2009 ASSOCIATION DES AMIS DES MYASTHENIQUES DU MAROC aamm25@gmail.com assistance 00212-661252005 telfax 00212-537376330
Comments
CommentsMy name is kelly Williams i saw your profile today and became intrested in you,i will also like to know you the more,and i want you to send an email to my email address so i can give you my photo for you to know whom i am. Here is my email address (kellywilliams504@yahoo.com) I believe we can move from here! I am waiting for your mail to my email address above. kelly (Remeber the distance or colour does not matter but love matters alot in life
CommentsMy name is kelly Williams i saw your profile today and became intrested in you,i will also like to know you the more,and i want you to send an email to my email address so i can give you my photo for you to know whom i am. Here is my email address (kellywilliams504@yahoo.com) I believe we can move from here! I am waiting for your mail to my email address above. kelly (Remeber the distance or colour does not matter but love matters alot in life
Commentsaaaa341zzz
CommentsAs a person with MG for the last fourteen years, it was heartening to read of the struggle of another with the disease. I have not remained the same person, I have had to adapt and have used meditation and excercise as tools. Your courage and persistence are an inspiration. I was born the same year as Steven, that is 1955. I am fortunate to have Duke and UNC in my back yard as there are two active MG researchers here, one at each school of medicine. The care of a good physician for a person with MG is crucial. Self-help is also a key. I am especially interested in the theory as to the cause of onset to the disease. Overwhelming stress and underlying emotional pain coupled with the necessity to perform may be a key. The neurologist at Duke toldme I would have to adjust to the disease as I was a type A personality. I also note that being around stress in others is a possible factor. The published research is not conclusive. Thank you for sharing your thoughts, writing and family with the world.
CommentsIt's an amazing story--your father was one thoughtful, intelligent man. I have MG and do seem to need Prednisone, though is does scare me. His LF analysis/rebound is definitely thought-provoking. I most definitely think he was on to something with his "trauma, personality-trait, theory. Amazing, amazing man! Kim.
CommentsYour father had such a wonderful way of relating his experience, the process we go through in trying to understand this strange disease, and must have been an extremely intelligent man to be able to analyze the whole picture so well! It was very helpful to me to read his book, because I too have been classified by many as an over-achiever; driven; can do type and that, I realize had caused some of my problems in managing this disease. I was very sorry to read that you all lost Steven to the disease. I am going to recommend this book to others in the chat rooms I've started visiting, because I can read in their descriptions that many of them are also probably exacerbating their disease in an effort to "beat" it. Thank you so much for continuing the website posting. It was the most enlightening thing I've seen in all my online research! Please accept my condolences on your loss. I just wanted you to know that this man's life has had a very positive influence in my struggle with the illness. Sincerely, Rebecca Slegl rslegl@qwestoffice.net
CommentsWhat can I say to have lost a colleague in this life but to be assured of his blessings to so many through his book. When a childhood friend sent me the first edition in 1997, I wrote all over it with my own uh-huh's of similar feelings. Then, to be honored in Clete's asking that I do his Forward for the next edition was a boost that Mestinon and Prednisone could not match!! Now, here we are still around, Clete has gone on to his Great, great rewards. Now, the websites are filled with all sorts of references and that is wonderful. Back when.....the mysteries were exactly that. Family, friends and one's own self would wonder what in the world is going on. There is so much help now that one even has to guess sometimes for the most appropriate for their situation. Nothing will fit better than to read Clete's book first and foremost. Then, begin to make decisions for yourself and/or your loved one. I surely will never be gifted in the areas of Clete Gress, but I am certainly willing to correspond with anyone that wishes to send a note. I am not a medical doctor. I am a clergy, retired/disabled missionary who understands the dilemas and frustrations and have learned about Spirituality, Silence and Solitude and its healing impact on MG, and now Parkinson's. God bless Clete's niece, his son, and all of his supportive family. Carolyn
CommentsMy brother is 56 and has just been dianosed with Myasthenia Gravis. I want him and his wife to read this book but it is too long to print out. Is there anyway you can mail a copy to me so I can give it to them. I think it wil be an inspiration to them. Thanks, Joan Bishop, 24 E Perry St, Manchester, GA 31816
CommentsThank you for your book.11/10/08 Less then 8 weeks a go My life changed. After reading your book. I know now that drugs are not the only thing that may help.at 56 I did not want to think my life was over.By the end of your book I did fill better. With some work I now think I can live to be 100. A good 100. Thanks Gary Flesner
CommentsI praise God for your fine book and that you unselfishly and NOT greedily have posted it online for us to use it freely. My son is only 18 years old and hasn't "officially" been diagnosed with MG. The personality traits SO mirror his, though. Thanks so very much for your honesty, your perseverance, and plain speak. You have already blessed me and our family.
CommentsHello Mr. Gress and Family, 5/4/2008 My name is Diane and I was dx in March of 2003 with MG. I read your book early in the walk with this hidden Monster we call "MG". And I've just finished your book, again. I'm sorry that you were cursed with MG, but a small part of me Thanks God for you & those who have shared their pearls of wisdom with us "newbies". You have given me a more positive way to look at it all. And that isolated feeling I seem to carry everyday, subsides. Just knowing I am not alone in this walk OR maybe its just the good cry I have that relieves it, too. You're always in my prayers. Is there any chance that you and your son might ever considered adding chapter updates? I'd love to read them. Love & Prayers, your MG relative Diane Baca *Roseville,CA.* mg2003@comcast.net
CommentsHello! I think I picked up a couple of your prints/etchings(?) today at an yard sale in Manvel, Texas. I have #3/8 of "The Architect" (1965) and #4/7 of "The Bridge" (1965) Can you tell me what you remember about these and any history behind them? The Archetect is cubist style and "The Bridge" is sketched with a man climbing to a dizzying height on what appears to be a suspension bridge. I would love to hear from you about these and hope that this comment brings you many wonderfuol memories and I love your style!
CommentsDear Mr. Gress, I am so blessed to have come across your book.It has truely touched my life and I see alot of myself in you. I believe that your book will help me in alot of ways and I can't wait to try your techs. myself. I am 45yrs and a Mother of 3. My MG was confirmed in Aug 2007. But I was having symptoms after recovering from being bed ridden for 3months after my 3rd daughter in 2001. At first I thought I just needed to get back into the groove of things. I had to have her C-section along with a Hysteroscopy. Trying to recover from this,plus going back to work full time,and I was in full time ministry in my church. This had seemed to be a GREAT challange for me. I just could not get my body to fuction the way I was use too. I just kept pushing myself as Is normal for me. My way of thinking is "If I stop going this will over take me,I have to fight through this,I have a Family to take care of,etc." In the past 5 yrs. my symptoms continued to get worse. Blurred vision,Stairs were harder to climb, walking, standing to long,muscle weekness,numbness worsening,the list goes on.I have had some family life challanges to deal with that I thought was why I was going through all of this. My mother came down with Cancer in 2002along with losing 2 members from her family side with cancer, I had lost my Mother- in- law from altizmers, 2yrs later we lost my father in law. I continued to push myself thinking that I just need to get myself in shape or something. I was justing worse. My last attempt to try and walk up our 2 flights of stairs at work. I decided to talk to my Doctor. And their it was, after serval tests, CT scan and a muscle bysopy it was confirmed. I am currently taking Mestion 2tablets 3times a day with little affect. I am still trying to work full time and taking care of my precious family that does not understand. To make a long comment short. I have been imspired by your book and like you I am seeking answers in everyway that I can. You are a hero in my eyes and I pray that God will continue to bless you and your family. your E-mail friend Diane Glueckert Dglueckert@earthlink.net
Commentsthanks for having your book online. i come from Kenya but its unfornate i have to learn more about MG after loosing my friend in February 2007 she used to get very bad attacks on her breathing and always needed emergency medical attention and always taken to ICU for ventilation. wish we had seen your book and this site before. God bless you
Commentscan you tell me if you were exposed to agent orange in the service. my husband was recently diagnosed with this myasthenia gravis. he was in Vietnam in 1972 and exposed to agent orange and research we have done shows a probable relationship. he is just now trying to get signed up at the VA system and saw a disability evaluator recently to get a possible claim. he is only 56 years old and his health is deteriorating due to this MG. anyway, do you know of other possible internet sites with Vietnam veterans with this disease that i can do more research with them. thank you. what an inspiring book you have written. my name is Becky and if you have any help for me to do more research to help my husband it would be greatly appreciated.
CommentsThank you for your book. I was diagnosed with MG in 2002. I have benifited from your research. It has been the best resource for me so far. I only just recently met one other person with MG and I passed it on to her. What a gift thank you
CommentsDear Mr. Gress, I just finished reading your online book, and I am just so amazed at the similarities in your thoughts and my own. I was diagnosed with MG in 2003 at the age of 50. Up until that time, I was a 911 operator who always lived on the adrenaline rushes after helping someone; and always felt the pressure to perform without defeat, as I was divorced and raising my two children on my own and knew that I had to be there for them. As of now, I am still unable to work...I am on SSD and Disability Pension from my job. I have just recently become interested in meditation, and I have noticed that I do seem to have better control over my weakness. I also find it helpful not to be regimented anymore about doing anything. As you mentioned in your book, I just go with the flow and then return to finish something when I have the energy. I was always a person with a strict schedule to stick to; and I find that just doesn't work anymore. Reading your book has given me some inspiration to continue with the meditation, and try more positive mind control. Depression is something that is so easy to seep its way inside of you; and I see how everything spirals from there. Initially, I was on 60 mg Prednisone daily, however, when my Imuran became effective; I was able to wean off of it completely. Absolutely horrible drug...it took me over a year and a half to withdraw; it was extremely painful. I still take 2-3 Mestinon tablets daily also. I just wanted you to know that you have given me new hope about returning to live a more normal life. I found your ideas to be very sensible, and I hope to see a huge improvement in my own condition. Thank you for sharing this with others. Sincerely, Linda Kametz (lmkalert@aol.com)
CommentsMr. Gress, Thank you! I could not stop reading this book. Your insight and experiences are well documented in the book and have insipired me to take charge of myself and my MG. I plan to start meditation and yoga. Although I believe each patient's experiences w/ MG are different, so much of what I feel and thought you have expressed. It's like you have read my mind! I encourage all thoise diagnosed w/ MG to read this book. Thanks again for opening yourself up wand sharing your story. I am grateful to you. Sincerely, Nancy Buehler New York
CommentsJust checking on Clete. Hugs and Prayers from Carolyn
CommentsMy name is Jenny and I am a 28 year old wife and mother. I have had some very strange symptoms since just before my 26th birthday and after a lot of researching I think I may have MG. The symptoms began with weakness in my right eye muscles - a lot of drooping - and then progressed to weakness on my entire right side, along with muscular aching like they've been overworked or something. When this first began I had health insurance so an MRI was done (which was normal) and an EEG was done (which was also fine), but then our health insurance ended and we were unable to get an answer for the problem. Years later, I'm still struggling with it. Some days my right eye droops so much I can barely see out of it, and I limp because my leg muscles are sore and weak - I look like I've had a stroke or something! I get so frustrated I just break down crying - like when I can't get the windows in the house open or something. I've also recently discovered on a test that when my eye is droopy it makes my reading rate slower, which directly effects any college classes I try to take. This weakness throughout my right side does improve if I get a decent amount of rest - but I don't get a lot of that. My oldest son is a high functioning autistic and doesn't sleep well - so I'm up with him a couple of times a night. My other son is up every once in awhile as well, so I often just don't get enough rest to be able to function properly the next day. I'm afraid my symptoms are beginning to get worse - I've been under a lot of stress lately, and I'm finding that not only is the weakness coming on more often, but I'm feeling "jittery" regularly and I'm having some weakness in my left arm now. A few times in the last couple of years I've gone a couple of months managing to get enough rest and have felt like maybe the "weird" problems I'd been having were over, but then they just came back. I just finished reading your book, and I'm hoping I can get your ideas to work for me. I'm hoping to get an actual diagnosis someday when I can afford it - until then, at least I can try something. Thanks for giving me a sense of hope, Jennifer Buckley
Commentsplease vissit us to http://myasthenie.forumactif.com
CommentsDear Mr. Tschirhart below » In-case you didn't receive my recent e-mail I'm posting this here in hopes that you return and review Our Comment Book again. Clete absolutely gives you permission to print his book and try and recoup your cost of printing only. I see from your post below that you understand how a copyright works so no other words are necessary. Clete & I think it's wonderful that you're starting up a support group in your area to help others and if Clete's book can help in any small way, that would be great. Once you have your group in place if you would like I can post the contact information on our Links Page. Please let me know if there is any thing else I can do for you. Take Care & God Bless ~ Phillip Gress philgress@beyondthelimits.net
CommentsDear Clete: I have read your book and appreciate your sharing your story. I am starting a support group for MG here in San Antonio TX and would like to share your story with them. I can give others access to your website s they can view it "free" on-line. However, I'd like to copy it and have it available to hand out in hard copy. I do not plan to plan to reproduce it to make a profit..just the cost of printing it. Do I have your permission to do this? If not, do you have hard copies available for sale? Elroy J. Tschirhart 210-493-7164 elroytschirhart@sbcglobal.net
CommentsDear Marsha below » Thank you for the heads up on this one! I was very surprised, and pleased, to see my Dad’s book on E-Bay. I was taken aback though with the price, $79.95! That’s a little steep for a paperback copy but we have no control over used copies, I did however leave a nice note with them and maybe they’ll bring the price down. Thanks again for the heads up and your concern. All My Best ~ Phillip Gress philgress@beyondthelimits.net
CommentsAs a fellow Myasthenic researching for any information I can find, I stumbled across this Ebay auction that I thought you should be made aware of. Hope all is well, Marsha http://cgi.ebay.com/Beyond-the-Limits-A-Self-Portrait-of-Myasthenia-Gravis_W0QQitemZ330031860541QQihZ014QQcategoryZ378QQrdZ1QQssPageNameZWD1VQQcmdZViewItem
CommentsYour book was very uplifting. Although I do not have MG, I have been diagnosed with fibromyalgia. One of the symptoms of fibromyalgia is that the upper body muscles (shoulders/neck) become tight, sometimes making it difficult to speak. I have started using my mind to help relax the muscles. Your book has given me insight on how meditation can help me. Michelle from Georgia
CommentsI need to e-mail Mr. Gress, to ask him if I can translate his book to Portuguese. Would you please send me his e-mail address? dulce@estudiopedra.com.br Thank you Dulce ( from Brazil )
CommentsClete thank you for your insight that you put into this book. It is Great!
Commentshi my name is alexander gress i´m from germany and find u´r web side i´m 34 years old and search for ppl with name gress
CommentsThank you so much for sharing your story and your theories of possible causes for MG. I read your book a few weeks ago and, I have to add, I stayed up most of the night because I had to read to the end! I felt so emotional when I had finished - you touched many chords. It proved a turning point for me so I had to return to your site to thank you and to tell you that the double vision I have had since last May is, I would say, 90% better. I am lucky that I have only had double vision but it has been a long road to health because I have done it without recourse to Mestinon or steroids. I first had double vision in 1994 which baffled the experts and righted itself after 4 months. I then had perfect sight until 2003 when I had double vision again (again undiagnosed). I thought sleep was the answer - I had just been overdoing things and, yes, it went away in just 4 weeks. So in May 2005 I didn't panic, I just concentrated on relaxing and sleeping but nothing I did seemed to help and it became clear I was going to have to push for a diagnosis. With the diagnosis came short-lived relief when it began to dawn on me that my body meant business this time and if I didn't want MG to affect more than my eyes I needed to do more than just address obvious health issues like better diet, exercise and more sleep. When I read your book, I really related to your theory that certain personality types may be susceptible to MG, especially ones having a "strong sense of duty". I realized how much I had taken on caring for an elderly mother (she lives not far away in her own flat but I have taken on more and more responsibility for her over the last few years.) I have now organized qualified people to share that caring with me (a huge relief!) and this means I can now spend quality time with her and we can enjoy each other's company instead of me running about coping with crises all the time. I also realized I was ignoring my naturally strong creative needs, never getting around to doing those things I enjoy and which I feel are my special gifts. I have enrolled in a life drawing class and, after overcoming a fear that I would not be able to draw as I once could, I have found that as I immersed myself in concentration I forgot about my eyes and they have improved measurably with every class. I also really related to your camping trips on your own - I had said to my husband right back in May that there was a strong feeling inside me that I needed to find a small cottage on a deserted island in which to spend time on my own before I could heal myself. There's not much wilderness here in Southern England (!) but I did start up Yoga and this has given me the tools with which to meditate and relax. I can now see a time coming in the very near future when I will be able to see consistently and all day, and I will endeavor to take forward the lessons I have learned into a healthy drug-free future. Thank you so much for your help and inspiration. Kindest regards, Jen (from Hampshire, England)
CommentsThanks for the read of your book - very interesting and I think I too fit into your profile of why myasthenia happens to certain people - its good to find information written by another myasthenic rather than a so called professional - thanks again - Claire, Yorkshire, England
CommentsHi Grandpa! I'm using the computer at the library and so I can't e-mail (I'm sure Mom filled you in about all that!), so I'm leaving everyone messages on their guest books. We hope you're feeling good, and I really want to try and come out to see y'all very soon with the kids. Talk to you later. Love, Valarie
CommentsMr. Gress, my name is Diana Freeman and I also have MG. I was diagnosed at the age of 21 and was told I would not be able to have children and would be wheelchair bound by the age of 30. I am now 34 years old and am the mother of 2 wonderful boys, Jayden age 10 and Jacob age 8. I enjoyed your website and I have downloaded your book to read. I wish you the best of health and will keep you and your family in my prayers. Sincerely Diana
CommentsClete, my friend and colleague in the MG world. Hello from Tulsa! Thanks Phil for putting together such a wonderful web page! Many hugs to the whole family, especially to Mrs. Clete for 50+ years! How great a mission-to get your book out in space for the world-reader to learn so much from you firsthand! Reading it gave me Hope, Strength, and a well for stamina to marry and now raising 2 Mozambican adoptives during their teen years --all with MG. Keep going Clete! Carolyn [Belshe] Cowen Date: 29 Mar 2005 Comments Prof. Jeff Frankel Date: 28 Mar 2005 Comments Hi! My wife and I know someone with MG. We are going to share your Web site with him. Thanks! Jonathan Crichfield Manassas, Virginia Date: 17 Jan 2005 Comments my dad's name is Steve Date: 27 Sep 2004 Comments Enjoyed your site very much... great stuff!! Regards Sleep Country Canada Date: 10 Sep 2004 Comments Thank you so much for all of your information and for sharing you life with others. My Dad has been diagnosed with MG on top of his already diagnosed Parkinson's, this has been very hard for me to deal with. But thanks to you I have some hope. I love my Dad so much and was so confused on his double diagnosis. So thank you and God bless you and your family! Stephenie Westmoreland Branson, Missouri Jerrylives30@aol.com Date: 10 Sep 2004 Comments Thank you so much for your book and your website. My dad has MG and Parkinson's. This has been very hard for me to accept. I was online one evening looking for information on the double diagnosis and came across your site about MG. I again just wanted to say thank you and God Bless You and your family...... I am pretty emotional when it comes to talking about my Dad. But you have given me some hope. Stephenie Westmoreland Branson, Missouri Jerrylives30@aol.com Date: 06 Sep 2004 Comments What an incredible story but definitely not "unbelievable" incredible. It so closely parallels my own life story, it is quite remarkable. I just came across the book last night and couldn't go to bed until I had read it all. I was in the Army, 1973, in Texas no less, at Brooke Army Medical Center, Ft Sam Houston here in San Antonio. The entire story would take at least another 80 pages -- probably more. I was first diagnosed with late onset acid maltase deficiency, a diagnosis that has been well confirmed. It has very similar symptoms to MG. I was medically retired at 100% in 1974. This past March people began to ask me what was wrong with my eye. "I don't know. What's wrong with my eye?" I would respond. They would say, "It just doesn't look right." After a few days of this, I saw my primary care physician who got on the phone to my neurologist almost immediately when he saw me. My neurologist had me immediately come to his office and it is not too much of an exaggeration to say he almost had a panic attack on the spot. My eyelid was drooping to the point I could barely open it by then and it didn't take very long to confirm I also have MG. I have precisely the personality type described in this book and, having read it, now it doesn't surprise me that I have MG. I learned over a 30+ year period how to push my muscles way beyond the norm thanks to the acid maltase deficiency. And the amazing thing is that I have already been using many of the techniques -- meditation, rebound -- to deal with the AMD. One other coincidence, I teach photography (was never patient enough for painting) and am working on a series of books on the South Texas hill and brush country that began while hiking in several Texas State Nature Areas. It is going to take me a few weeks to sort through everything that is racing through my mind right now. Thanks for making this book available on the web. I will be in touch by email soon. Donald Ewers, San Antonio, TX Date: 15 Jun 2004 Comments Dear Sir, I have just finished reading your publication. I can't tell you how much I enjoyed it. I read it in just a few hours. I was so grateful to have a man, similar to my husband give such a detailed experience about dealing with such a life changing illness. My husband, a Peruvian, whose father was a Chief Engineer for the Marshall Marines in Peru followed his fathers example in ambitiously moving to the United States more than 25 years ago and carving out a life for himself with no help from anyone. We now have 5 children and 2 grandchildren. He has two months ago been diagnosed with Myasthenia Gravis. His work is Running a Company single handedly, Construction. Commercial and Remodeling. Since his diagnosis he has been working as if it is his last chance to ever draw money....Just as you said that you did the first year of your diagnosis. So far he only has his eyes and neck effected by the illness although at times he chokes easily over water, and once on food at a restaurant... I cant tell you how much it has meant to me to find your book to understand him. We actually have the opportunity to sell our home and build on some land in Costa Rica and let my husband draw disability. I have decided that is the right thing to do to simplify and allow my husband to have time to heal and put into practice the suggestions that you have made. They make so much sense to me. I am especially fond of the meditation idea, and its connection to a faith in our Creator, as we are a very Religiously devoted family," Jehovah's Witnesses." Meditation on Spiritual things and especially God's Word the Bible is part of our Dailey routine. My husband has given us many years of hard work and comfort in making a good living for us and I think that now in his time of need it is only right that we put him first for a change. Your beautifully written book has been a great help to me. I cannot emphasize that enough. My husband really is sure that he is not going to get any worse. I am not sure. Besides his being a determined person as you describe the type that is effected. His dream was to get out from under the extreme pressure of his hard work and Moving to Costa Rica and having a simple life and teaching our children a better way to live. We did this and my middle child was raped and we returned to the States. I'm sure he had to have covered his feelings and suppressed this , having a deteriorating effect on his immune system. He returned to have the same stress and has had sleep apnea for 15 years. He also gained weight up to 400 pounds at the time of his diagnosis of mg. Since then he has been on a diet and lost about 50 pounds. He still works hard on this. So my point is you can see that he fits the profile as you have described. I am sure I will continue to read this book over and over. Thank you so much for your eloquently written book that will help me help my husband of 26 years, he is only 53 to cope with this disability. P.S. did you ever resolve the fear of the flying experience... Truly I am grateful, Deborah Lynn , ATLANTA GA. Date: 29 Mar 2004 Comments Clete, 10 yrs. ago, I contacted you and ordered your book. We even corresponded for a time. Your formula and theory on adrenalin and its effects on MG are so correct. Even though my MG has progressed steadily. Whenever, faced with an adrenalin stimulating event, my MG improves for that time. However, when the adrenalin episode waines, I get hit with the full impact of having over done. Now, the trick is to keep the excitement, to improve the MG symptoms. Hence, your book. With continued appreciation for your personal work. Your MG friend, Diane Mount email dmsweetie@juno.com Date: 06 Mar 2004 Comments To all of my Father’s visitors: We just celebrated my Mom & Dad’s 50th. Wedding Anniversary, February 6th. 2004! Clete & Joan Gress have now been married for 50 wonderful years. I could not have been blessed with two more Loving Parents! Happy Anniversary Mom & Dad! Love ~ from your son, Phil Date: 06 Feb 2004 Comments I found your book interesting. I was diagnosed with MG 16 months ago, and medication has helped very little. At this point I'm willing to try whatever works! thanks for sharing your experience! Anne G. Date: 06 Jan 2004 Comments I also have MG, but only got 30% from the VA, since they only examined once on a "good" day. How can I get the VA to increase my rate since my ams, legs, shoulders and respiratory muscles are all affected? My e-mail is Frayne538@NTW.com. Thank you for this helpful site. Date: 29 Dec 2003 Comments I like your self have MG. At times it can be a very isolating condition. Thankyou for this informative and interesting site. I am inspired by it. Jill.C. Date: 22 Nov 2003 Comments I'm doing a class report on the impact of MG on social interactions. Thank you for your personal account of MG. TM Date: 06 Nov 2003 Comments I need ro know the email addresses of doctors in America just 2003 guest book to enable me have contact with them because of my programme Date: 28 Oct 2003 Comments i have seen this guest book and have understood the sufferings of many people, i want to help any person who may need my financial assistance, my close relative have suffered from the disease. any interested person can contact me on cappaegosis@yahoo.com ,i also want to commend those that opened the guest book, thanks Dr. Craig mert Date: 14 Oct 2003 Comments After I readed about mysthenia gravis I found out that it is a very fatal dissease to have to live with and to see a love have to suffer, this really touch me because Iam very thankful that God made me the way he did. by, Latoya Davis Date: 21 Sep 2003 Comments Dear Mr. Gress, I read your book several months ago and really enjoyed it. It has helped me tremendously to understand a little more about what my body is going through. I appreciate it greatly that you’ve chosen to offer your hard work to those of us who also suffer at no cost! God Bless and thank you again. Ralph Jackson….Medford, OR Date: 06 Aug 2003 Comments I found your book very helpful and can relate to alot of it, not now but in my past that led up to now and the MG in my eyes, it helped me understand MG. Thank you. Helen Owens Date: 31 Jul 2003 Comments My Name is Penny, and I was diagnosed with MG 11 months ago. I am currently on mestinon and taking monthly IVIG treatments, which help some. I have not met or spoke to another mg patient, and would just like to know what is in store for me. I have eye droopiness, double vision, arm and leg weakness, and shortness of breath. I have been on Imuran, but my doc took me off after 3 months. I would just like to know worse case as well as hope. Please e-mail me when you get a chance. You have a beautiful family, and i enjoyed your website. Date: 11 Jul 2003 Comments Dear Clete, After reading your book, I felt compelled to revisit your website and write you a thank you note for sharing your life with all of us! Your book was so well done that I couldn't put it down. Thank you again. God bless you! Nancy Thompson - Denver, CO Date: 15 Jun 2003 Comments I am looking forward to download your book and read. My name is Rozana. I am from Albania. If you don't know, ALBANIA is a third world country between Greece and Italy. I actually live in America for almost three years. I go to the university of Iowa and I have a wonderful husband who I married last September. The reason I keep reading about MG and its webpages is because my dad who is still in Albania suffers from MG. He is been diagnosed with it almost 30 years from now. What a miracle for him and for us, his children to see him fight over this disease. We thank God and pray every day for those people that suffer with MG to become better. We thank and pray everyday for the doctors and the science being able to fight this disease by all means. Anyway, I have so much to talk about my dad and what I am doing now about this disease. I am so much trying to set an organization in Albania, so MG patients will have better chances to fight over this. Now I am in a situation that I need help. Dad is in a very bad situation. His MG gave him diabetes because of taking cortisone ( I hope I spelled it right) for a very long time. Doctors in Albania can not do anything at this point. Because it is a third world country (very poor) doctors do not have the technology and the knowledge to research about MG at thi point. I have tried to contact specialized MG doctors here in America and I have got no answer. Please help me if any of you MG patient are at this stage and have found the substitute medicine for cortisone. Please I really need help. I don't want to loose my dad now. I have not seen him for three years. I live in Cedar Rapids, Iowa. AGAIN, PLEASE HELP ME IF YOU HAVE THE ANSWER. MY TEL: 319-373-2034 MY E-MAIL RKADIL@HOTMAIL.COM. GOD BLESS TO ALL OF YOU WHO HELP YOURSELFS AND THE OTHERS. LOVE ROZANA AND HER HUSBAND TYSON. Date: 05 Jun 2003 Comments Excellent, the only real support when no other has been available, will send Email now that we have found your book - thank you! Don and Moira Newcastle Australia (Don - MG) Date: 04 Jun 2003 Comments Very nice book. It has already helped me. Brij Date: 18 May 2003 Comments RG...husband of someone with myasthenia gravis.i am in search of all information that i can get on this dadburn disease that wrecks everyones lives it infects.She was diagonised a little over a year ago just after my fathers death from multiple myeloma blood cancer.nothng like a double wammy ,but God only gives us what we can handle if it becomes to much ,all we have to do is ask an look.As a truck driver its hard to be home when you are needed.God has blessed us with an office job where i now can be home more.Now all we have to do is get adjusted to the situation(if that is possible).thank you for this web site full of the info i am looking for. god bless Date: 14 May 2003 Comments You know I've always been there for you. Love Doc. Date: 21 Apr 2003 Comments My husband has MG and I didn't realize until now that you have a web site and a book. I am writing this from Newfoundland, Canada and would like to know where I can get a copy of your book. Thanks Kathy Date: 21 Mar 2003 Comments Clete, Thank you for your book. I got a copy several days ago and just finished it last night. I couldn't put it down! I too have MG and your book helped put a few things into perspective! Thanks again -- Rick Johnson Date: 14 Mar 2003 Comments Thank God for this brave man that was willing to work so hard to experiment with his Myasthenia Gravis and was so willing to share this positive information with others that have MG. I am so thankful to know about this book which is offers free on this website so that I can print it and use it as a textbook and best of all it is in lay terms and very, very reassuring for family and friends of MG patients. Thanks to all the Grees family for their faith and care. I will forever be greatful and you will be in my thoughts and prayers. Jimmie Archie Harris jharris@brazosnet.com Date: 26 Feb 2003 Comments Hi Clete, You may not remember me, but I remember you and your wonderful book. Its Diane from formally San Diego, now in No. Ca. I contacted you almost 10 years ago now. Yours was my first contact with MG, when in the early days things were so confusing and overwhelming, your message of perserverence and triumph, is inspiring. Yes, 10 yrs. later, still MG, gen. but I stay positive, have lost most of my voice, but am busy typing and staying in contact that way. Wonderful website, I have told others by word of mouth about your wonderful personal account with MG. Take care, Blessings to you and your family. Diane Mount, Windsor Ca. Date: 06 Jan 2003 Comments Hi! I haven't read your new book yet, but I will. Boy, I am really impressed with this web-site. I love you lots. So great to see you last Sunday. with love, your little sister, Grace Marie Benson-Shafer Date: 30 Dec 2002 Comments thank you very much for this interesting book - I was diagnosed with MG in January 2002 and have been able to find little literature written by MG sufferers - this book looks into the personalities of MG sufferers not the chemical based facts written by experts! Thank you once again, I will enjoy finishing this book and maybe posting more comments then. Claire Hunter (England) Date: 15 Dec 2002 Comments Cathie White I am 59 of age with MG the only way is laugher and looking for the good or positive things and ways of life happy is family freinds god and what you and only you make like blue bird or I rather like the green bird of happy days and life so much life around your book show that ==love and love everything and life==thank you for sharing ==Cathie White Date: 13 Dec 2002 Comments Just clicked onto your new website. We have a copy of your book you sent to us several years ago. We were very impressed with it and as we had known you before you wrote the book it meant a lot to us that you sent one to us. I had a sister who also had MS. She passed away 4 years ago at the age of 72. We shared many good times with you and Joan while stationed in England in the 50's. Still hope to see you one of these days. We send our love to both of you and your family. Your Steve still has a special place in my heart, and I also got to love and hug Dave as a baby. You probably know who this is by now. Again we send our deep affection and respect to both of you "Harry" & Cokie Harris |
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