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Glad you got in today Wendy. Isn't it nice to find a doctor who is willing to give you the time of day? It really makes a difference in your perspective. I hope that he is able to give you some good news.
Dana
 
Dear Wendy,
I am so happy that you were able to find a Dr to take on your case with all your other illness and ailments this must be very frightening for you. What I'm praying for you is that you do not have ALS and that it is a conglomeration of all the other things that you have an if they can work with them all seperately by taking just the babysteps each day will find you better and more at ease as time goes by. I am so glad to see you joined our forum and if the news is ALS you will be one more person that we will love and do our best to help you get through whatever help you will need.
Kim
ALS About Loving Someone
 
Thank goodness Wendy, you've finally found an open mind! We are always here for you. Melissa
 
Wendy, what is a MDA clinic? And what is GBS? Sorry, if I missed any of the definitions that may have been posted.
I will join the rest to say I think you finally have found someone who is willing to listen to you and go the nine yards. It sounds as if he may have to start from scratch and begin with a clean slate. That is good, too many hands in the pot only make the potion thicker.
Hang in there, learn, ask questions here and to the doctor. Present your ideas to him also. Nothing wrong with an informed patient.
 
RE

MDA, is the muscular dystrophy association, clinic. GBS is gullian bare syndrome. I was paralized in 24 hours from it in 2003.
In the ICU for weeks, and had to re-learn to walk etc. Took about a year.
I got two week post flu vaccine, while also sick with mono. Either which could cause it. Wish I knew about it.

Oh, half way through these steroids,....I cant wait. My legs are brusing
from it. and I STILL have the asthma, I cant win,lol I see my regular doc on the 5th, mabey he can get me a nebulizer:) The worse part is they
seem to make me feel weaker. I read thats a side effect of them though.
Sure give you a lot of energy though.

I have a question. I need to get a cane. Is there a special way to shop for them for height? Im 5'11, do they come in sizes? When I stand up to get up and down, sometimes my leg gives out, and BOOM..... not fun.

I have my walker from when I had GBS, but I dont need that , as its primarly one leg that is real weak with muscle loss.

Thanks

Wendy

Wendy
 
Mda

Here is a link for more information on the mda clinic.

Barrow Neurological Institute

They are nice if you qualify to get in as you see all your specialists through them, and what your insurance does not cover they do.

They also have equipment loan programs and such.
 
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Dear Wendy,
In your caase you might be seeing a OT who could fit you with a cane if not go to your pharmacy and they should be able to fit you with a cane if they sell them. Make sure you are comfortable with the feel and the grip walk around with it for awhile this should help you choose. There are so may different kinds now. An Easy Living Center is also another place you could check out if you have them.
Sincerely,
Kim
ALS About Loving Someone
 
Hi Wendy,

We also went to the MDA Clinic in Farmington Hills, Michigan. Just outside of Detriot. They were awesome there. They so hoped that they could have given us a different diagnosed other than als. However, it wasn't meant to be. They gave us a rash of tests and several xrays, spinal tap, mri, etc. The doc there was so generous and kind. They really know what they are doing, and I highly recommend the MDA Clinics to anyone. As Kim said, go to your local pharmacy or drug store, they have a variety of canes that be suited to your height. I had to use one a couple of times due to my knee, and that is where I got one. Sounds like you are still having a rough time. Well, hang in there girl, we will give you all the support we can possibly muster up. Keep us posted and have a good night.

Stay Strong, Love, Carol
 
Hi Wendy,
Let me share some thoughts about the big picture of God and our spirituality. Mankind is living in a state of darkness right now such that our relation to God is either nonexistent or confused with overly simplistic concepts aout what God truly is. I have been studying what's called spiritual science which is a very accurate and detailed description of the spiritual universe. This information comes from people who are spiritually advanced, or clairvoyant. Rudolf Steiner was such a person and he gave over six thousand lectures about this huge body of knowledge. From studying spiritual science, I have come to where I feel totally at home in the spiritual universe such that my having ALS is not a concern to me because I know it's here to help me grow. From the beginning, due to my orientation to the spiritual world, I regard ALS as a true gift and blessing for me. My growth has bloomed wonderfully since hearing I have ALS. I feel for people who are so frightened and angery at God. I hope my introducing them to spiritual science might be the spark that leads them to what will shine light on the darkness in their lives. I'd love to go on about this and you can contact me if you want to know more. I am here for you Wendy. Love, Michael
 
We are all here for you Wendy - we are all here for everyone.

Regardless of the road you travel and what lies ahead - you will adapt and find coping mechanisms. Whether through Michael FM's "spiritual science" or just going outside to feel the sun on your face and listen to the birds welcoming spring - my personal preference is for the latter approach.

I'm not a spiritual person - and I cope just fine without thinking that this life is just some practice run for a big reward in the afterlife. It is my personal belief that my only after life will consist of my being worm food.

Do I get scared sometimes? You bet! Do I cry? uh huh...but I spend more time laughing...

I would not go so far to say that ALS is a gift...but since my diagnosed I've realized how many things I use to take for granted. Everything now has more meaning - it's like all of my emotions have been heightened (that could just be the ALS talking). In a lot of ways I've never been happier or felt more alive.

That numbness that so many people experience as a result of the dreariness and lack of purpose in their day to day lives has vanished for me. I now know that everyday is a gift and I already have so much to be thankful for in my life. Is it better to live a long life feeling half dead all the time or to live a shortened life feeling totally alive? I don't know...

I also imagine how I would feel if, after stressing about ALS and letting it consume my every thought, I lay in a hospital bed dying...not from ALS but from getting hit by a bus or infected with bird flu. I would feel pretty stupid having wasted all that time stressing about ALS only to die from something else unrelated.

You may not have a choice about ALS - but I firmly believe you have a choice about being happy or depressed...and I choose to be happy!

So Wendy - do whatever it takes to make you feel happy - reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms, calling an old friend to laugh and cry - and if you think it may help - by all means get in touch with your spiritual side....

As long as something does not involve a significant outlay of money or cramming your opinions down someone else's throat - and it makes you happy - I say go for it...

Good luck.

Richard
 
Is Wendy still reading this forum? She made all her posts over a one week period in late June and first few days of July, 2005. In her last posts she was about to go for a diagnosis and that was the last she wrote.
 
Geez - I didn't even notice the dates. I was really responding to Michael's comments.

Why is this post a sticky?
 
Hey Richard,

I am with you on the Michael "thing" - it can make you mix up the dates for sure...-:)

Wondering about Wendy also.
 
michael fm

you a getting on my nerves! I want to know which part of ALS is a gift or a spirtual blessing? Is it the part were you lose the ability to wipe your own but or pick you own nose or hey wait i know the part were you can`t breath or walk or talk thats a true blessing all in its self. I believe in GOD and I can tell you he has nothing to do with this mess. now I would like if you stopped preaching on here there is lots of scared people that might not like it I know I don`t thank you very much:evil:



thank you
kim
 
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