I have been diagnosed with ALS

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Shatzie

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I spent five days in Texas last week, three of them at the Neurological Institute at The Methodist Hospital seeing Dr. Stanley Appel and his team. On Wednesday, he officially diagnosed me with Bulbar ALS. He said that he is encouraged about my condition. Although my tests and symptoms were obviously pointing to ALS, he considers the symptoms mild and slowly progressing at this time. In his opinion, the hardest thing that I will have to deal with in the next year is other people's attitudes when they find out I have ALS. He has prescribed Ritulek and a vitamin regimen.

Although I didn't want a diagnosis of ALS, I am relieved and thankful that I have been diagnosed at this stage, knowing how difficult it is for some to get a diagnosis when their symptoms are much more profound and disabling.
 

vmd

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Well, if the news is not all good, at least it is slow in progression. I am having many of the same symptoms you have, bulbar symptoms, that is, so I am expecting similar news. God bless you and your children. I will keep you in my prayers.

I also concern myself with how others will respond. It's as if one feels stigmatized...different from others. Yet, perhaps this is mostly on our thoughts not in the thoughts of others? Those close to you, the ones that count, will continue to love you. In the end, that is what matters.
 

crystalkk

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Shatzie,

Please keep up the positive thoughts, and may it continue to be a verrrrrrry slow progression.
 

CindyM

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Shatzie- we'll be here in cyber-space for you at every step of the way. It has been a pleasure to "meet" your daughter, as well. What a lovely young lady you have there! Sorry for the bad news, though. Cindy
 

Al

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Sorry about the bad news Shatzie. Maybe something will come of this Lithium therapy and with slow progression it can help you.
AL.
 

Carolan

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Shatzie,

I am sorry to hear about your diagnosis, but also glad to hear that Dr. Appel was somewhat encouraging. If your visit in Houston was anything like ours, the whole thing probably still seems a little surreal. I hope that you will be able to go back for follow-up visits because he really is top-notch. We haven't been able to get back down there because my mom has progressed so quickly (officially PMA, rather than ALS, but very quick nonetheless) and is now ventilator-dependent.

As scary as this all might be, at least we live in an age where we can connect with others on the internet who are going through similar experiences. I doubt that people will judge you harshly, but you might encounter some who just don't know what to say or do. You seem like a really nice person, so I know that you will handle it well.
 

ccox

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I'm sorry for your diagnosis. I'm glad that you've been told that it is slow moving. Please live every day to it's fullest, see all the people you want to see, visit all the places you want to visit, eat ice cream every day.:mrgreen:
My mom got her diagnosis and basically gave up. Holed up in her house with her dear husband and it now near death. She never went anywhere or did anything. I'm so sad that she didn't live life while she her symptoms were still managable.
 

vmd

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Shatzie:

Thanks for keeping us updated via your blog entries.
 

vmd

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Shatzie:

I read in your blog that you talked with your friend for hours and you are still teaching. I suppose your speaking voice is still in good form? How long do you plan to teach? I must lecture 3 hours every other day, and I'm not certain how long I can keep up my speaking voice going.
 

Shatzie

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I am still teaching. On the average day I sound like I have had a drink (one for me was always enough, I have always been a lightweight) but my speech can still be understood. I teach second grade and my students know that I am having problems with my speech. When I am really tired I sound more groggy. The speech therapist in Houston said that the articulation training I received in voice lessons long ago has helped me.
 

Shatzie

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Oops! I sent that in before I finished my thought. I plan on teaching as long as I can, not only for the money, but I enjoy what I do. I will start working on voice banking soon and I hope that will allow me to be able to work longer. I have discussed with my principal moving back into the ELL (English Language Learner) position next year because it will be available and it carries less responibilities and doesn't require a substitute if you are off.
 

rick/Wpg

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We too are sorry for your diagnosis. We are glad that you've been told that it is slow moving. Rest assured out thoughts and prayers are with you. This forum will be a God send for you.

Rick and Joan
 

vmd

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Shatzie:

I'm glad you have supportive people at your school that will give you the option to continue working.
 

siuska

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Shatzie

When i heard you were going to Houston, i was hoping for good news....well, i am still hoping for good news...since your progression is very slow maybe it is PLS...i certainly hope so and please check out ALS-TDI forums for information on lithium therapy...sounds very promising...sending much munay and blessings,
siuska
 

Vicki S

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Moving Downstairs

My husband moved me downstairs today because I was having trouble the stairs. I love my new room. It's closer to the bathroom and kitchen and the bed is very firm which I like. I was having trouble lifting my leg to get into the car and my husband had a thick cover for an ice chest so he put that in the car. It raises me about an inch above a curb when I step on it. Much easier to get in the van now.

He's wanting to put me in the wheelchair because I fell twice last week. I only hit my head once though. I find I'm really clumsy in the morning before my shower.

I don't where I'm going to put guests though. I only have one more bedroom left and my sister and my dad are coming to see me the latter part of Mar or April. Oh well I'll worry about that when they give a sure date.
 
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