MY SILENT BATTLE WITH M.S.A.

Coming to terms with life in a    Wheelchair has been a difficult one but with the support of Richard and my family, I have found it a lot easier to accept.
Coming to terms with life in a Wheelchair has been a difficult one but with the support of Richard and my family, I have found it a lot easier to accept.

MY SILENT BATTLE WITH MSA

With the support of my husband I am able to cope better
With the support of my husband I am able to cope better

WHAT IS MULTIPLE SYSTEM ATROPHY (MSA)

WHAT IS SYSTEM ATROPHY

Multiple System Atrophy (MSA) is a neurodegenerative disease marked by a combination of symptoms which affect movement, blood pressure, and other body combinations , this is where it gets the name "Multiple System" Atrophy. The cause as yet is unknown.

LIVING WITH MSA

Where do I start. Well, I have suffered from ongoing probems with my health for so many years now it is difficult to go back to wear this all began. I guess you could say basically for the last ten or so years I have had problems with my digestive system, urinary, problems walking, balance and numerous other symptoms. My MSA has become so bad now that I have a carer who comes in every day to assist with my daily needs..

I have seen many specialists for a number of years in the various fields that I have mentioned and all of them have treated for that particular area,non of them realising that maybe in fact, all these problems were somehow linked in a way that non of them at the time could see. I would find that when I stood up from time to time, my legs would become so hard and rigid that it was as if they had turned to cement. Then there were times when for no particular reason, I would start to slur my words and would get the occasional tremor in my right hand, which was only for a few minutes and then it would stop.My bladder was also causing me problems.

I was also diagnosed with severe degenerative disc disease in my neck, which led two having surgery on my neck to having laminectomies performed on the diseased discs and inserting titanium discs. I have lost count of the number of MRI's I have had performed over the years.I had a stroke in 2004.However, my neurological system didn't seem to recover,they were unable to put their fingers on just what was wrong, My doctor thought I had something like "Multiple Scerosis" or something along those lines. As it turned out I didn't have Multiple Sclerosis but he was on the right track.I was admitted to Hospital for more surgery on my neck to fix another problem with the discs. My Neurosurgeon was walking up behind me a few days after my operation without my knowledge. When I got back to my bed and discovered he had been there, he inquired "how long have you been walking like that".He was in fact, referring to the way I had been dragging my right leg. Of course I had been doing it for some time. He suggested I see another Neurologist.

That afternoon the Neurologist came to see me. He asked me to tell him about the symptoms I had been having for such a long time and to try not to leave out anything because everything was important, even if it seemed trivial to me. After I did this, he gave me a very thorough examination, including lots of neurological tests such as touching my body with various objects and asking me if I felt them and whether they were blunt or soft. This seemed to go on for such a long time I was getting very worried about what was wrong with me. After he had finished his examination, he looked at me and starting asking more questions, some of them very personal, but he said that they were very necessary, even if I found it hard to answer them because I found them embarrassing. He then said he thought he knew what was wrong with me but he wanted to go and do some research, check out my results from the tests that he was having done and last of all he was going to send up a couple of medical students to see me.   . He has been here two hours, asked me an abundance of questions and performed the longest examination I had ever had in my entire life. Now, he also wanted me to see some medical students, maybe it was something rare I thought and he didn't want to alarm me until he was sure of his facts. I got myself in such a state that the nursing staff were all trying to calm me down by saying not to worry too much because it may turn out to be nothing at all. But my gut instinct was telling me something different, and I was more inclined to go with that rather than believe them.

Later in the afternoon, just after lunch, they arrived. No a couple, but there was eight of them. One by one they each introduced themselves and asked me if they could ask me some questions about my medical history and then if it was alright to examine me. They were all so very professional, which put me at ease more, and informed me of what they were going to do before they actually did it to see if I was comfortable with the idea. It took three hours for all eight to complete their questioning and clinical examinations and leave me in well I couldn't say peace, because I was far from that. I couldn't stop thinking of all the things that could be wrong with me. As all thoughts of various illnesses and diseases rushed through my panicking mind, I was hoping all the time that it was something that could be cured and not something that couldn't.

DISCOVERING THE TRUTH

I hardly slept at all that night because I couldn't get the thoughts out of my mind that something bad was going on in my body and I was about to find out what in a couple of days. The night sister came in several times during the night offering me cups of tea, I must have had at least two or three, not to mention all the biscuits and cheese that I consumed

I had a light breakfast becomes my tummy was in knots. I couldn't relax, nor get the ideas out of my head that something could be seriously wrong with me. No matter what I did, reading the paper, watching TV, even talking to the nurses, they still crept into my head. I wanted so badly to know and then again I was scared of what I was going to be told when I next saw the Neurologist. I didn't think it would be too long though before he would be back and the verdict would be revealed.My nurse arrived with my morning medication which I took and informed me that my Doctor was on the ward and would be in to see me very soon. I decided to get my shower out of the way after I had finished my breakfast so that I was nice and refreshed and ready to hear the news that he had for me regarding my diagnosis.

Finally, I heard him coming towards my room and then t owards my bed. He didn't look like he was the bearer of good news, in fact, his face was very serious looking, not even a little smile or smirk was obvious. I began to sense that he was about to give me a diagnosis that was not good . He said he had come up with a diagnosis for why I was experiencing the symptoms I was having and why I felt so tired and so out of sorts all the time. He said there is no easy way to say this except to tell you that you have a disease that is called MSA, or to put it another way "Multiple System Atrophy". My first response to that was to just say "what did you say I have "Multiple Sclerosis". No, he said, I told you that I believe that you have a disease called "MSA", Multiple System Atrophy". I told him I had never heard of this disease. He said most people haven't heard of it. In fact, it is very hard to diagnose because of the complexities about it. It usually takes a number of years after you have been experiencing problems with all the systems of your body, just like you have, before a diagnosis can be made, and even then it is usually made by a process of what disease fits with the symptoms and clinical signs that the patient is suffering from. But there is a chance you could be wrong too, isn't there I asked him. Yes, but in your case everything fits with the diagnosis of MSA.

To say that I was shocked by this new revelation would be an understatement. The worst of this news was when he told me that there was no cure for this disease. He said all the problems that I had experienced with my digestive system, urinary system, etc, were all related to having this disease. I became very teary at hearing all this and he did his best to comfort me, but I was so upset it was very hard to believe that I had a terminal illness. The Sister in Charge put her arm around my shoulder in an effort to comfort me also and said that they would give me some reading matter to peruse about MSA and then I might be able to understand it a bit better. I said that I would appreciate anything she had to read because I wanted to know what was going to happen as this dreadful disease worked its way through every system of my body. My Neurologist told me that everyone is different and not everyone gets the same symptoms as each other. In fact, there are various forms of MSA;-

ORIGIN OF MULTIPLE SYSTEM ATROPHY

In 1960 two researchers , one called Dr. Milton Shy who came from the National Institute of Health, USA, and Dr. Glen Drager from Baylor College of Medicine, Houston, found that there was a very commone set of neurological manifestations in some patients that were associated with failure in their autonomic systems. They originally called this complex syndrome " Shy-Drager Syndrome, which is now currently referred to as "Multiple System Atrophy" or MSA

WHAT ARE THE VARIOUS FORMS OF MSA?

Symptoms of MSA can vary in their distribution, onset and severity with every person . Because of the fact, three different diseases were named to encapsulate all of the symptoms that people were suffering from. These were named as follows:-

1. Shy-Drager Syndrome

2. Striatonigral Degeneration

3. Olivopontocerebellar Atrophy

In Shy-Drager Syndrome, the most prominent symptoms are the ones that affect our

Autonomic System. This is the system whose primary job is to regulate our blood pressure, look after urinary function and any other functions of our body that we don't have to be consciously aware of what they are doing.

Striatonigral Degeneration. This is diagnosed when patients present with symptoms that are related to Parkinsonism, such as slowing up of their movements around the place and stiffness and rigidity.

Olivopontocerebellar Atrophy. Patient usually present with difficulty with their balance and their coordination. There is also problems with speech, with complaints of slurring of speech also.

WHAT ARE THE SYMPTOMS OF MSA?

* Stiffness and Rigidity

* Slowing up of Movements and freezing

* Postural instability; Loss of Balance and Incoordination

* Orthostatic Hypotension (significant drop in blood pressure)

* Male Impotence

* Difficulty passing Urine

* Problems with Constipation

* Difficulty with swallowing and problems with speech i.e. slurring words

* Blurring of Vision

WHAT ARE THE COMPLICATIONS OF MSA?

In its early stages MSA is easier to live with but over the course of several years, the symptoms become more widespread and a lot more severe in nature. People can become faint and even fall when they suffer from Orthostatic Hypotension. There can also be a considerable loss of coordination, walking can become slower almost to the point of not being able to walk and rigidity and stiffness will interfere with the things that you like to do during the day or night. In other words, your social life is the thing that suffers most, because you don't want to go anywhere. You may feel subconscious about your symptoms, especially the tremors in your hands. Then there are the times when you are having a perfectly normal conversation with someone and all of a sudden you start tripping over your words which then leads to complete slurring of your words to the point where you can't put two words together. I ask you, why would anyone want to subject themselves to a life like this. But you do, because if you don't your only alternative is to live at home like a vegetable and that is no fun at all believe you me because I did just that until I realised that it was the wrong thing to do.

ARE THERE ANY TREATMENTS FOR MSA?

Yes, there are a number of drugs that are being used to treat various symptoms relating to MSA, but I was told by my Neurologist that these are known to become less effective as the disease progresses.

Levodopa and Dopamine Agonists which are drugs that are used to treat people with Parkinson's Disease are sometimes effective in the treatment of the symptoms of slowness and stiffness and rigidity in MSA.

Fludrocortisone is a drug used primarly in the treatment of Orthosatatic Hypotension whereas Mitodrine along with some other drugs, can be used to raise the blood pressure.

Men can be treated for their impotence with the use of Penile Implants or sometimes even some drugs

If someone is suffering from Incontinence they could be help by catheterisation

If on the other hand, their problem is one of Constipation, then increasing your dietary fibre intake or using laxatives is recommended

Speech Pathologists are always available to offer you strategies to improve the problems you have with your swallowing and speech. Another point of interest to note is that it may become necessary in the later stages of the disease to have a Gastrostomy Tube, which is a tube that is designed to deliver your food straight to your stomach.

THE LONG TERM OUTLOOK FOR MSA SUFFERS

MSA usually hits people around the ages of fifty to seventy or thereabouts. The majority of men and women who are affected by MSA do not as a rule, have a very good prognosis. In fact, the survival rate is usually seven years after the disease has been diagnosed. It doesn't seem very long does it? Records show that what is obvious is that the more severe involvement that the Autonomic Nervous System has in the disease, the poorer the prognosis is. However, those whose Striatonigral System is more seriously involved have an even shorter period of life from the time that they are diagnosed. I guess the motto here is live each day to the fullest because you don't know now if it is your last. That is what I am doing and will go on doing until the day comes when I can't do the things I enjoy anymore.

ADDITIONAL RESOURCES AVAILABLE

* Advocacy/Support Organizations can help the MSA patients and their caregivers

learn coping strategies and they can offer support to them when they encounter any

difficulties in their dealings with their MSA

* Multiple System Atrophy Discussion Forum

I wish to point out also that there are books in Medical Libraries in particular for Medical Professionals to read that give a much broader picture of what Multiple System Atrophy is all about.

WEBSITE ; There is a Website called 'PATIENT'S LIKE ME.COM that you can join for not only MSA but also for other illnesses. You can give a description of your illness, tell the treatment you are on and they will suggest the names of  a caregiver that you can e mail that will help you cope with your illness with regard to not only the treatments, such as medications you are taking but any other assistance, such as massage, etc. I have joined this as I am hoping that it will aid me in a lot of ways.

FOR ATTENTION;

If anyone reading this is suffering from some or all of these symptoms, please have yourself checked out as this is not a disease to muck around with. I was originally diagnosed with Fibromyalgia,and went for four years thinking this is what I had. Then one day, I realised that things were changing from what they had been previously and luckily for me, my diagnosis of MSA, even though it has been a tough one to handle and is hard to get through each day to the next, it was good to finally know that there was indeed something more sinister lurking in the background and now I knew what it was. Remember that old saying IT'S BETTER THE DEVIL YOU KNOW,THAN THE DEVIL YOU DON't.

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Comments 29 comments

lorlie6 profile image

lorlie6 6 years ago from Bishop, Ca

What a terrible ordeal, BB, I have to say that you have handled this diagnosis and all with great courage and strength.

I recently was diagnosed with fibromyalgia, only to find that my hips were in need of replacement-causing odd pains here and there...

I wish you well in your struggle with this disease, and hope to see many more hubs from you-your stories are gripping!


LynFerrand 6 years ago

I applaud you You are a brave and exceptional person. Thank you for sharing this with me. A great Hub.


akirchner profile image

akirchner 6 years ago from Central Oregon

Remarkable doesn't even begin to cover it - and what a great hub for information. Kudos to you and your husband for such courage 'under fire'. That truly does show the mark of a great relationship when someone is there for you in bad times. It is easier to stick when things are going great and so happy that you have such support and love. Take care and will put you in my thoughts always. Audrey


ripplemaker profile image

ripplemaker 6 years ago from Cebu, Philippines

Sending you loving and healing thoughts your way. I am amazed at how you are handling all of this. Support does make a difference. This is a very informative and helpful hub. Thank you for writing this. Blessings..


BEAUTYBABE profile image

BEAUTYBABE 6 years ago from QUEENSLAND AUSTRALIA. Author

I read in your profile that you are a healer. I wish you didn't live so far away from me Ripplemaker, then you could lay your healing hands on me. If anyone could bring relief to someone with something like this, my money is on you.What a gift to have, the power to heal!!!!BB


ripplemaker profile image

ripplemaker 6 years ago from Cebu, Philippines

If there is any help I can offer I would, I can still do that long distance. Maybe we can set a time...Will email you and see from there.


tipperary profile image

tipperary 6 years ago

I have read your story with great interest as my mother has very similar symtoms. Wait til you hear this!

For a number of years my mother has been suffering from neurological disorers which are getting worse. Symtoms include, loss of balance, slurred speech, co-ordination problems, bladder prolems, etc. She was sent to a consultant and numerous tests were carried out, in fact they tested her for every known disease but all tests came back negative. She was slowly getting worse. A few months ago they diagnosed her with a condition called Paraneoplastic syndrome, simply because all other tests were clear and in the doctors opinion her symtoms were similar to people with this condition, though as in your case no blood test confirmed it. Recently my sister happened apon a website about "Bromism" and thought the symtoms of this were so like my mams, she asked our local doctor to test her for it. The doctor agreed but was doubtful as this condition is vey rare and he even had trouble finding a test centre for it. Guess what! after a few weeks the test came back positive. She now has a diagnosis and is waiting for treatment which is a simple enough treatment after all these years.

If you want to know more about this by all means contact me.


Liz 6 years ago

Thank you for sharing your story. My dad is suffering through MSA now. There is very limited information out there. I have chosen to go the route of reading stories about people coping with it. We are in Canada so even less resources. Of course they cannot diagnose until autopsy but seems to fit the bill for this rare disease. My dad has been a hard worker all his life only to have to retire early due to the onset of this disease. He was told it was PD as most are for a couple years. I just do not know what to expect to come and that scares me. The unknown. He is starting to lose his spirit. He no longer goes out in public due to stares and comments. Unfortunatly people assume he is drunk. His symptoms are progressing very fast. Please continue to share your stories so that some of us can learn to understand more.


BEAUTYBABE profile image

BEAUTYBABE 6 years ago from QUEENSLAND AUSTRALIA. Author

Dear Liz,

Thank you for your comments. I can give you more information about MSA,Please contact me on private chat line and I will tell you where to go to get more information.I know about another site that will help you enomously. It will be very beneficial for you and your father both as a help with him and a support mechanism for you and your family as well. Please don't hesitate as you will be very pleased with the information I have for you. I recently found out about this myself and it has been a great support and I have even had another Australian contact me since as a result of this website. I cant advertise it here unfortunately. Love Beautybabe (Pam) x


Hugh Williamson profile image

Hugh Williamson 6 years ago from Northeast USA

Hi BB. Your story is a sad one but you are obviously a person of great courage and I know you can persevere.

Yahoo Groups has a good MSA forum with many members. It's the only place I have found with a lot of info on MSA and a lot of people sharing information.

My best wishes and prayers are with you and your husband.


BEAUTYBABE profile image

BEAUTYBABE 6 years ago from QUEENSLAND AUSTRALIA. Author

Hi Hugh,

Thnks for the information about MSA.

Thee is also a very good site that I use as well,which is called "Patient's Like Me". it is very good as you get to talk to other patients.

In fact, I helped a lady who googled in Queensland found me. Her husband is sick, but they still haven't proved MSA is the problem with him. Anyway, we are keeping in touch with each. I think she appreciates having someone to talk to and you can compare symptoms, treatmnts, etc.

I think these sorts of sites are good in that they help people who are not sure about things to talk with other people who are more knowledgable. Talk later. God Bless you too Hugh and hope to talk again BB/.


BEAUTYBABE profile image

BEAUTYBABE 6 years ago from QUEENSLAND AUSTRALIA. Author

Hi Hugh,

Thnks for the information about MSA.

Thee is also a very good site that I use as well,which is called "Patient's Like Me". it is very good as you get to talk to other patients.

In fact, I helped a lady who googled in Queensland found me. Her husband is sick, but they still haven't proved MSA is the problem with him. Anyway, we are keeping in touch with each. I think she appreciates having someone to talk to and you can compare symptoms, treatmnts, etc.

I think these sorts of sites are good in that they help people who are not sure about things to talk with other people who are more knowledgable. Talk later. God Bless you too Hugh and hope to talk again BB/.


Hugh Williamson profile image

Hugh Williamson 6 years ago from Northeast USA

Thanks BB - I'll check out the site. Take care.


Pamela Kinnaird W profile image

Pamela Kinnaird W 6 years ago from Maui and Arizona

I had never heard of this disease. My heart goes out to you. I hope you are having many good days with regard to your health and your sense of happiness. How wonderful that your husband is a loving and supportive person.


tipperary profile image

tipperary 5 years ago

Hi, hope you are keeping well, i have read your story again and i would like you to read the story on my page as it might interest you. I also wonder, before your symtoms started were you on any medications to treat gastrointestinal disorder, nausea, depression or on any antipsychotics or sedatives as these drugs can bring on neurological disorders of al kinds. Again i hope you are well.


Scott Poole 5 years ago

My wife as diagnosed with MSA in February of 2007. We have been dealing with the daily challenges of this disease every day. I wish you well. Your strength comes through in your writing. Stay strong.

I have tried to keep a "journal" of sorts on my wife's journey with this disease, and my reflections on it at

www.livingwithasnowman.blogspot.com


Pam Bower 5 years ago

I have added a link to your blog on the Multiple System Atrophy Awareness website. http://www.MSAawareness.org This is a new site promoting March as MSA Awareness Month. Hope you can share news of MSA Awareness Month by posting the press release on your blog and also please sign the MSA Awareness petition at http://www.gopetition.com/petition/42198.html


Ritje and Guardian Angel JiePie 5 years ago

Dear Beautybabe,

I know you from the PatientsLikeMe web.

Hope everything is still a bit under control and that you have a lot of support from friends and family around you.

I have posted your Blog on the website from the WORLD-MSA-DAG.org. I'm sure you will post the link to this into your Blog as well.

http://www.world-msa-day.org/World-MSA-Day/Welcome... / contact@world-msa-day.org

Hope to hear from you soon,

Big hug from Ritje (Belgium)

jiepies@hotmail.com


Michelle of Brisbane 5 years ago

my father has had this disease for a few years now and even has the 20% risk of on-and-off dementia. He was also diagnosed with parkinsons before they realised it was MSA. It is possibly due to exposure to chemicals during national service in Vietnam War but government will not recognise it, so all superannuation from my parents go to caring for Dad, as both retired early when his health deteriorated too much to work, at 61. He had just been diagnosed prior to walking my younger sister down the aisle. He was such a vibrant person who had started going to the gym a few years before diagnosis, and had such a bright and inquiring mind. He can barely communicate now. My best to you and your husband, as it's been very hard on my Mum to see her beloved husband slip away and have to care for him as a child, instead of enjoying life and retirement together.


Erica 4 years ago

There are a number of people I have noticed in Queensland and Australia are being diagnosed with MSA. Yet, I have not found a local support group or charitable organisation. There are groups in the UK and America.

Does anyone know of an Australian group to send donations towards looking for a cure, research or educational support?


Mummabearpink profile image

Mummabearpink 4 years ago from QUEENSLAND, AUSTRALIA

Erica I wish I could find a support group as well, as my husband hs been diagnosed with MSA as well and he just wants to die as he said he has no quality of life. It is so hard being his wife for 41 years and seeing this ex truckie just give up on life. He has had so many sytoms over many years and has prostate cncer as well and has had 8 weeks of radiation over last Easter but it is increasing not decreasing. I just wish there was someone I could talk to that knows about MSA as my dear man is just waiting to die and I want him to enjoy what time he has left but he said he just wants to just die instead of ll the discomfort tht he has been through for years. Of course Drs say they can't be sure when it first started so don't know where he is at in the time frame. He is using a walker now and has some choking times, BP very low on standing and walks very slow and doesn't want to talk because his voice is husky now at times. Anyone have any suggestions as to how I can help my darling please.


thesingernurse profile image

thesingernurse 4 years ago from Rizal, Philippines

Thank you very much for sharing this Ms.Pam. I have never heard of this disease before and I am very privileged to have stumbled upon this wonderfully and comprehensively written hub of yours. It must be difficult dealing with this everyday. But with what I see, I know you are doing a great job. Please remember that your Hubpages family is always here for you. And please, can I be a part of such family?

I wish you and your loved ones nothing but happiness in life. I would include you in my prayers.

- Tina


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

Hi Tina,

Welcome to Hubpages.

It was lovely to hear from you. I see we have something in common already. I am a trained singer and also have done nursing.

I thank you for your remarks here concerning my illness. MSA which is very similar Parkinson's Disease is a very rare disease. Not a lot of people have heard about it and it is very debilitating. I have tried to take it one day at a time but have good days and bad days as you can imagine.

Joining HP's has helped me so much. I have met so many wonderful and supportive people. I can't do as much with HP as I used to and would like to but I do the best I can when I can. I have been writing poetry now for some time and also have written three children's books which have been published. The website is pamschildrensbooks.net.

I would love you to be a part of the family and I will be following you now as well. I have read with much interest your profile and even checked your blog where you did your review of the book. It was very well done and interesting. What an amazing story about that girl who sees her face on the milk carton listed as missing.

I am going into hospital for surgery on my neck in February and will be needing those prayers you talked about.

I hope we can talk again Tina.

Take care and God bless Pam x


Maryanne 4 years ago

I have read your story, and you are remarkable woman in the eyes of so many. My dad was diagnosed with MSA two/three years ago. Now my dad can't move or do anything at all, as he is bed-ridden all day and sometimes I have to keep him comfortable. I have gave up my job and and my everyday chores just to look after my dad. I also have family of my own so I bring my mum and dad to leave with me and my family. I have searched on various websites about informations regarding MSA, How to cope with someone with a terminal illness such as MSA. I think it's very important to let them live life to the fullest as you don't know what's come of tomorrow.


pbower 4 years ago

Hi Pam, For your dedication to educating others about Multiple System Atrophy through your blog, I hearby nominate you as an "MSA Awareness Ambassador". Cheers! http://www.msaawareness.org/?page_id=1142


pbower 4 years ago

If you or others are on facebook you can join the MSA Australia and New Zealand Group;

http://www.facebook.com/groups/MSAOZNZ


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

Dearest Maryanne,

I apologise for not answering you sooner. I have had several hospital admissions for surgical on my neck and then losing my balance and hitting my head and knocking myself unconscious. My husband rang 000 and they told him to do CPR until paramedics arrived who took over then.It was very scary for him.

I am so sorry to hear about your father. MSA affects so many things in our bodies it's hard to to talk about everything, if you know what I mean. I am no bedridden yet. My doctor said some people deteriorate faster than others. I was 50 when diagnosed . Can I ask the age of your father?

I would love to talk to you a lot more but I have just come home from hospital. However, I wanted you to know that I had seen your e mail and if I can help just by a chat please call me on my private e mail which is on the top of profile is or just through the hub what ever makes it easier for you.

You are in my throughs and prayers as well as you dear loving father.

God Bless you both Beautybabe x

O


Ritje 4 years ago

Dear Beautybabe, Still good to see on the blog.

Know that we will count on you again for the next World MSA Day... I'm sure you will be the leading lady in your country.

From time to time I look into the PatientsLikeMe site and remember the lovely messages you made to my beloved husband JiePie.

I wish you all the best and hope to hear from you soon.

Take care,

Ritje from Belgium


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

I am sorry that it has taken me this long to get back to you. I have had to take a few weeks out because I have had to have a big operation on my cervical spine and there have been complications.

I spent ten days in ICU and six of those were spent on life support as I could not support my own breathing. My neurosurgeon said that it was the trickiest operation he has ever done and he has been a surgeon for a long time. I am only 55 and he says I have more degeneration than he has seen in men and women a lot older. Not the sort of news you want to here is it?

I've decided that I am not going to let MSA take over my life completely. I have in fact written three children's books that I have had published. I have a website pamschildrensbooks.net which describes them and has also a facility to buy them but I am going to change the prices because I think that they might be a better at a lower price.

I just don't know the best way to sell them as I am trying to raise money to help a group called "Youngcare". I don't know whether you are from here in Australia so you may not have heard of it.

They have built two facilities for young people who because of various illness or problems can't be looked after at home anymore. Unfortunately, because there isn't enough of these facilities, these poor young people have to go into Old Peoples Homes. It is very hard for them because they can't communicate with them. They are either to sick, old or have dementia.

Usually it's all three.

Anyway, I rang them to see if they would be interested in me doing a book signing either at their headquarters or perhaps one of the childrens wards.

We could advertise in the paper to try and reach more people.

It would be great I think. In fact the young lady I spoke to said they had never had such an offer before. Its a win win situation. They buy a book, I sign it and then I split the money taken with Youngcare. That way everyone is happy. How good is that. Not only are they buying a book or two or whatever, but they are making a donation as well. Like I said before, it's a win win situation. It might get some big interest because afterall a lot more young men and women are getting sick with these horrible debilitating diseases.

Oh I did see your e mail in Patients like Me I just haven't answered it as yet. I will tell you though that my answer is yes, I would be very pleased to have you as a carer on the team. I will answer this officially.I'm still recovering from my surgery.

Thank you also for making me an ambassador, I was absolutely thrilled. I just don't know what I did to deserve this award. I'm sure there are a lot of other people who have done more than my couple of hubs.

Anyway I have to be going as it is very early in the morning when people will be sleeping as it is a Sunday. I suffer very badly from Insomnia and I don't get sleep much at night. I lie down on the bed when the day starts but when I wake up I don't know whether it is morning or afternoon. I am usually very disorientated. what a way to live. I hope you are okay.

See you pbower Pamx

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