Multiple System Atrophy and me

I am sick since 1999 (I'm 59). I was diagnosed with MSA in September 2002.
I was a very active woman, professionally and cultivating my garden.
As for all incurable disease, I made the point, organized my life according to MSA. I trust my doctors... I stick carefully to their advice and the advice of patients I have met within the ARAMISE Association. The disease has evolved, I too!! I am exhausted by that fatigue, pain and recurrent chest infections. But I have a good morale, I live with it, accept it.
I have a goal: ensuring that the research advances, while increasing access to information and support for patients and their families.

Written by albertebonnet, published over 2 years ago.

In hindsight, there were signs of the disease that I wasn't taking into account. I ask myself a lot of questions about this: falls in the yard, what I called a strange fatigue, my right leg which would sometimes fail me. But I would manage to explain everything.

And then there was a violent incident: losing consciousness, loss of control in my limbs, the inability to move, to breathe, and blindness; I had the night to recuperate a little bit. Since I live alone, I called my doctor the following day. Then started this long period with doctors being more or less sympathetic.

Very severe orthostatic hypotension, brutal urinary incontinence, constipation like I had never seen before, and, a "strange" fatigue.
I was diagnosed with "nervous depression," often "faking"...,
Nothing as far as endocrinology is concerned, nothing in the internal ear _I would lose my balance_, I move directly to the "diagnosis of chronic fatigue" which makes people around me smile (myself included), with a supposedly normal CAT scan!!

A friend who was a doctor recommended I met a neurosurgeon.
The neurosurgeon asked for an emergency arteriography/angiography of the brain, he called me at home to tell me that the positive element was that there was nothing that required surgery and sent me to a neurologist, I told him I had already seen three, so he sent me to the one that I still see today.

In July 2002, this neurologist looked at my supposedly "normal" CAT scan, examined it, and found it "not normal" and gave a name to my pathology "multisystemic atrophy" that was to be confirmed in September with a urological test, etc... He gave me alpha fludrocorisone, physiotherapy and rules to follow in my daily life. I understood that it was bad since he kept repeating that what worried him was the fact that I lived alone?? I was happy to be able to give a name to my pathology even after having read articles on the internet.

After wandering through diagnoses, I started living with the reality of "rare diseases".
Luckily, I met with the Shydrager group put together by Pam Bower. A true life line.
With an Italian patient, we decided to create Shydragers.
Then the ARAMISE association _European in scope_we had Belgian, Swiss, Italian, Spanish, Maghreb patients.
We met young researchers who were full of passion and motivated whom I would like to name here and give all my greatfulness: Gwenaëlle Fillon and Pierre Olivier Fernagut. Thanks to donations, we have contributed and continue to help research.

I would continue my testimony with the birth of Rare Diseases Plan, of the Reference Centers, of the Competency Centers in France, the explosion of research worldwide during this decade and the continuity..

First, I wanted to thank the doctors with whom we work, Professor Rascol et his team in Toulouse, Professor Tison et his team in Bordeaux, without forgetting the teams from the Competency Centers.

We cooperated with patients groups and families, and internet groups.
There is no competition between us, we try to be strong and be grateful for the work done by patients and their families, whether it is through volunteering or financial help. I don't forget that even if these patients are no longer with us, their families are still here. I want to pay homage to our friends who have left us, who were so courageous, and the pain of the families. The association was built with them and it will continue. This is what we owe them.

To finish, never forget the pace of research is different from the pace of the disease. We should not aim at the wrong target.
I have been sick since 1999 (when I was 59). I was diagnosed in September 2002. I was a very active woman professionally, who would take care of her garden.
As with all incurable disease, I thought about it and I have organized my life based on AMS. I trust my doctors.. I follow their advice very closely as well as those from patients that I met through the ARAMISE association. The disease has changed, and I have too!! I am drained by this constant fatigue, the pain and repeated pulmonary infections.
But my moral is high, I live with it and I accept it.
I have one goal: help research move forward, and that information and support for patients and their family be available.

Written by albertebonnet, published over 2 years ago.

9 comments for «Multiple System Atrophy and me»

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  • Ritje | published over 2 years ago | Originally written in French

    Alberte,
    We are only on this earth for a short while and we have had the pleasure and the opportunity to meet, our paths have crossed on the AMS highway.
    - a big thankyou for your friendship and your courage.
    Ritje

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  • Ritje | published over 2 years ago | Originally written in English

    Dear Alberte,

    Thanks for sharing your 'inspiring life' story with us.
    Your dedication to support families affected by Multiple System Atrophy and your pioneering work in France is great.
    You are an inspired fan of World MSA Day and to take action for MSA Awareness.
    Alberte you are a true ambassador for the cause, and help make it a worldwide movement.
    1000x Thanks
    Ritje
    Cheers!

  • albertebonnet | published 7 months ago | Originally written in French

    Dear Ritje,
    Thanks at the outset for having accepted to hold the position of new ARAMISE President, which is not very clear given the context - our website piracy (hacking?), resignation of the in-charges neither ill nor likely to be ill, your own responsibilities... -

    Ritje, I am nothing but a patient afflicted with a rare and incurable disease.
    Those times, you know it, desolate , 2000...
    Isolation was terrible, even now, but a little less...
    I was greatly lucky to find the Shydrager forum with Pam Bower...
    It was some light in the solitude.
    Alberte

    Friendly,
    Alberte

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  • Ritje | published 7 months ago | Originally written in English

    Alberte,

    Thanks for all you did and still doing for all the MSA patients in France and abroad.

    The message posted by Pam earlier today on her Facebook is wording your feelings and facts for most of our patients; I repeat them here as they are so meaning full in understanding what really happen in 'living with MSA' :
    Pam: As I come in contact with more and more people via email and Facebook who are affected by Multiple System Atrophy I hear again and again a repeated heartbreaking lament... "our family has abandoned us" "neighbours and friends don't come around anymore". As if a diagnosis with a terminal disease isn't enough to contend with. Where are our friends and neighbours and extended family when we need them in a crisis? Is our society now so driven by materialistic pursuits that we have lost sight of what's truly important in life... to be there for others in their time of need?

    What Pam Bower writes , is a harsh reality . I do a call to each of you for the next few days to give to our MSA patients extra attention. As my son once wrote to JiePie : "The fact that you are mentally in order and your physical degenerates is a torture ," and it is a torture .
    On 3 October is World MSA . An email , a phone call or a card can do wonders .
    Help us in the fight against this incurable disease !

    Keep on going Alberte, we need you and we will help you evan more as we can.

    Have a great day ,
    Hugs
    Ritje

  • pougnon | published 5 months ago | Originally written in French

    Bonjour :Madame Alberte Je vous remercie de vous inquiétez pour moi,je vous écrit pour vous dire que je ne vais plus trop sur ce site,je me suis inscrit sur (vulgaris) .En ce qui concerne ma maladie sa suit son coure .Je vais avoir un fauteuil roulant.Car je me traîne de plus en plus ,c'est la suite logique de ma maladie,j'en connais un rayon sur ma maladie.Du fait qu'elle a était détecter depuis 1986 .Ont a fait des prises de sang,qui ont étaient envoyer a l’hôpital de la Pitié Salpêtrière à Paris.Et le résultat ne c'est pas fait attendre. Sur une famille de six personnes nous étions 3 a être atteins.Je suis le dernier encore en vie. Ma maladie se nome (Masha do joseph) de type 2.Une maladie rare environ 1 malade sur 50 000 naissances en France.C'est une maladie qui viens avant tout de l'ile des Açores, et qui c'est rependue comme une traîné de poudre.On trouve des malades sur tous les continents, sauf en Afrique la nature est bien faite.

  • albertebonnet | published 5 months ago | Originally written in French

    Monsieur Pougnon,
    Je comprends que vous ne veniez pas sur ce site dédié à l 'Atrophie Multisystématisée. Nous essayons de mettre nos expériences en commun pour une maladie rare AMS.
    Vous connaissez les problèmes posés par une maladie rare.
    Il n'y a aucun groupe qui se préoccupe de votre pathologie?
    Pourquoi alors ne pas créer au minimum un forum vous-même?
    Vous devez avoir consulté ORPHANET qui tient un registre des maladies rares connues à ce jour.
    Vous avez , par contre, vu que nous sommes sur ce site une parmi bien d'autres maladies rares.
    Je vous souhaite bon courage.
    Amitiés
    Alberte

  • julie | published 4 months ago | Originally written in French

    Hello,
    I'm back on the site.
    My mother is still in a serious condition, she's been lying for 6 months.
    It is the end of her disease.
    We try to make the most and we make sure that everything goes well for her.
    My mother has an impressive strength and high spirits.
    Thank you all for your support.

    Julie

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  • Corine33 | published about 1 month ago | Originally written in French

    Good morning Julie, I lost my mom a month ago due to that disease. I am like you. I did everything possible so that mom be in "best possible" state in the last days of her affliction. But that pathological affliction is tough and so ruthless that I was very often distraught in the face of the problems it brought forth.
    My mom herself is captive to her body and could not express herself and it was on a certain day that it was more than complicated.
    Important for me was to stay with her till the end...
    I wish you all the grit and courage.
    Corinne33

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  • MYMY | published about 1 month ago | Originally written in French

    Wish you all, who are attending your near and dear, all the grit and courage

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