I went to Oxford yesterday to see my Neurologist.Although you know when your body deteriorates you don't like to hear an official .He said it could be a variant of MSA. I know I have been down this road before and there was no problems with my autonomic systems but that was two years ago.It hasn;t half played with my mental health so now in addition I have got all the stress related illnesses back.I keep crying and want the familiar back.I know the theory of how to make yourself better able to cope but all that seems to have gone out of the window.I feel so normal until I walk or speak.Can anyone say anything to help.I know I have deteriorated rapidly but I thought that was what CA was.
Marie,
I dont really want to go next week to see my new Neurologist as i am getting worse,walking,balance etc,. and my Rhumatiod Arthris nurse told me the bursters in my thighs are due to my Ataxia not my arthris,i now go on my treadmill 2 daily to try and strenghen my leg muscles,but i am prepared to not like what i hear,thinking of taking my sister with me as i dont think she fully understands what can happen in the furture.what do you think?
Awww bless,Marie.. I so wish I could say something to help. I know you read Kati's blog and she is such an inspiration but... when you feel depressed and keep crying it is difficult to concentrate on anything.
I guess you need to talk to GP but that sounds such a flippant thing to say. You need hug but that can make you feel sorry for yourself.
I dont know the right thing to say but I do know you have friends on here who will sympathise and encourage you.
Hugs, Patsy xx
oh no maz we are sorry to hear the news hun u are in our thoughts and prayers xxxxx
MSA has been mmentioned before.I suppose I was happy with what I am familar with.Its a good excuse to do what makes you happy.It was only a suggestion but knowing me I have magnified it.Think the neorologist is barking up the wrong tree on the basis that I had a certain tightness in mhy chest which I had after a spell of bronchitis in my 20..He has put two and two together and come up with 5.I have always had low blood pressure and tightnessin my chest.I suppose he just wants a label or umbrella to put my symptoms in.I have had the tests for MSA twice before and each time they were negative.
Marie
I seemed to be going downhill fast too. it was only the last year I got the electric chair with recline as I struggled to sit longer than a few hours.
I’ve been doing the Forced Exercise for a year and have seen a big improvement in back pain levels, can sit longer, legs are stronger. It activates a different area to the brain than what’s activated with voluntary exercise (like pedalling yourself on a manual bike with no assistance). This was found to have resulted in a reduction in muscle spasms and tremors in Parkinson’s patients.
I have seen an improvement in several areas, which I never expected. I ony, bought them in mind to try and burn enough calories to lose weight and reduce my back pain to help when had to go out for several hours in chair, so have been thrilled with the results.
It maybe something that could work for you, sometimes we have to take a chance until we find something that works for us.
Kati xx
Hey Marie
Hugs and kisses from me too
love and light
Sarah-Jane
hello Marie, sorry to hear about your problems although I am not sure what MSA is. There is nothing really that I can say to help except lifes a bitch sometimes, take it a day at a time. Big hug from me too xxxxxxxxxxxxxxxxx
i was recently given a dianosis of MSA and it reallly made me feel down becuass all i do is think of all the things i enjoy like walking and gardening and driving that i can no longer do, and how long can I go without being a burden to my family?
Hi Marie,
I think words cannot express how we care your feelings, it is always okay to express here, we are companions, the fighters. Don't give up. It's okay to feel frustrated, depressed, lost and fear. Give yourself some time, maybe weeks or months, to let the negative feelings out. It's better manage it rather than suppress it to subconscious mind.
Do you think life is unfair? I do. I have a friend who got cancer on her leg, she is 20, in the middle of university study. She has to quit everything and fight with this rare cancer disease. When she accepts therapy, her hair dropped. She is getting recover now, can only stand up for seconds. She has to learn walking allover again. Before receiving therapy, she said she cannot give birth to any child after therapy, lacking of hope and confidence....
Another friend in her middle age got hereditary disease called multiple sclerosis. She has no response on medical treatment. The doctor has predicted that she will stay in a wheelchair a year later. She went through a long process of finding cure and fight with the disease, years later now, she is just a normal person, can do everything. Health conscious and stay strong.
Marie, what I concern is that you said you have stress related illness. The belief of a person will affect his thinking, his thinking will affect behavior, behavior affect outcomes..... chain reaction. Try to calm your mood and get out from the dark tunnel first. Don't let the negative feelings drag you down. Stay calm and look up.
Love
Charmaine
Hi Lindy,
Don't ever try to consider you are a burden to your family. If you take this perspective to see your family and see the world, you will feel ashamed, self-pity and become unhappy person. It is not your fault to have MSA, never. Try learning how to deal with the disease better, do your best. Love yourself more and live as happy as you can.
Love
Charmaine
lindilu said:
i was recently given a dianosis of MSA and it reallly made me feel down becuass all i do is think of all the things i enjoy like walking and gardening and driving that i can no longer do, and how long can I go without being a burden to my family?
Hi Lindy, Marie,
This is what my friend reminds me, hope you will find this helpful.
1. Understand the disease - search and select reliable information and understand more about the disease. Having understanding is enough, don't treat them like a script to follow. You know, same disease in different persons will turn up differently. Consider to maintain your body in a good condition, well prepare to overcome the symptoms and work better.
2. Find a goal to accomplish : any, any goal you like to pursue. Measurable, manageable and achievable. Daily goal, weekly target ...etc. e.g. movement, speech, reading...etc.
3. Reading inspired stories daily - stay in a positive way with hope and peace.
4. Daily - close your eyes, sit comfortably, relax your hands, legs and body.
* Breathe in - as much as possible - slowly and progressively -
think something positive e.g. let God comes in and gives me strength...
* Breathe out - as much as possible - slowly and progressively -
think that you are throwing away negative thoughts like worries, fears...etc. say bye to them.
Do this exercise every day, practice 5 minutes a day, when you feel better, do it longer.
Most of the time, our body is stiff. This exercise will help to calm down and release pressure that you are not aware of.
4. Find something you love to do and stay focus when doing it, suspend to think about the disease. e.g. reading, movies..... keep the mind running on something you love, avoid to overwhelm your mind with the pain of symptoms or disease.
Increase the quality of your life, make it richer. Though we got a disease, we don't have to live as a victim. We still have the right to be happy.
God bless.
Charmaine
Thanks for all your encouragement and support.It means a lot to me.Have been to church this am but kept bursting into tears.Know things will be ok in my head but the body takes a while to catch up.Been down this route before but don't have all my usual strategies like walking and gardening taken away . Feels like cold turkeying it but a friend of mine said it would pass and it did.
Marie
Dear Marie,
You are not alone. I believe you can make it, walk out from the dark tunnel and see the sun again. No need to make a big step or jump, but every little single step and look upward. Support you !
Love Charmaine
Let's have a good fight (with it) !
: )
Michael Ward said:
Charmaine: Those are very kind words!
It motivates me too!
Thank you,
michael
Good morning everyone... If you read my profile, you'll see I was a caretaker of a woman with Ataxia until her death in October 2010. Here is what I know for certain. It lingers then overcomes you. If I upset ANYONE, I apologize in advance. I truly believe that, had Nancy ( my charge ) been able to understand what was going to happen, then she would have dealt with it differently. She was bi-polar which created a different set of circumstances. Exercise maybe painful, but it is necessary... Conversations are important - real conversations. Don't dwell, but don't be in denial. Start to practice ways to communicate your needs without the use of your voice or hands. When we had to admit Nan to a nursing home, no one could understand her but John and I. Language is simply a series of sounds. The sounds change, but their meening stays the same. Funny story.. we were doing our daily visit to the facility, when a CNA was addressing another client and couldn't seen to understand him. John and I looked with surprise as we understand his mumbling perfectly. He wanted to go out to the lanai. My point is, pay attention. I made a llaminated, illistrated (sp) chart targeted to her specific needs. Including the way she would have said it... Like, "No... not the sandals, the tennis shoes!" It was 5 years from diagnosis to death. However, she had shown signs for a decade. She made all her decisions when she could speak close to clearly with our attorney. She wanted a certiandegree of pitty in the beginning, but realized soon after it brought only pain to those around her. I didn't let her treat me like a servant, or slave. Oh, trust me she wanted to, but soon understood "mama don't play that!" My point in all this rambling is, prepare yourself. Go out your way... Say see you on the other side... Good luck all.
Don't know what else to say that hasn't been said already Marie. All I can suggest is for you to have a look at this MSA trust website. Maybe you have already but they too have a discussion forum.
Take care Marie. Iain
Thanks for the website Iain.I have just registered although I stillthink I have got an aggressive ataxia rather than Multi System Atrophy.No symptoms of the rest of the brain only Cerebellar Degeneration.Think the Neurologist is barking up the wrong tree. Thanks anyway;it can't hurt.