I have been diagnosed with ALS

[Shatzie]

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]

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]

Shatzie,

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

[CindyM]

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]

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

[Carolan]

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]

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]

Shatzie:

Thanks for keeping us updated via your blog entries.

[vmd]

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]

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]

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]

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]

Shatzie:

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

[siuska]

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]

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.

[lovelily]

I am so sorry to read this news for you, and your family. Take care.

[Icanmanz]

Hi Shatzie! Just read about your dx. So sorry to hear this, and you will be in my prayers. I read a few of your posts, you sound so positive. Keep your chin up. God bless you, and your children (students).

Irma

[vmd]

Shatzie:

Perhaps, I missed this in your blog, but how did your children respond to the diagnosis? I am also curious as to how you approached informing them of the diagnosis?

[Shatzie]

I talked with my daughter on the phone the afternoon I was diagnosed. She is 15 and has been very aware of the situation and has known all along that ALS was a possibility. She was upset, but I have encouraged her to talk about it with me and she has. With my boys, the information has been very general so far. They know I have had problems with my speech and that I fell once. So we've talked about keeping Legos and their Star Wars action figures picked up, etc. They know I went to Houston to see a new doctor and find out what is wrong. I plan on taking time this week with my 9 year old alone to tell him that I have ALS and generally what that is about. I saw a great interactive website that explains ALS to kids, and I will show it to him. At this time, I will not tell them that ALS is a fatal disease. I think that I will reveal information as they need to know it, because they don't need to worry about anything that hasn't happened yet.

[CindyM]

I hope the conversation goes well, Shatzie. I give you credit for your courage! :-D

[liz]

Hi Shatzie -

Are you sure you can control the info (especially your prognosis) provided to your son once you tell him it is ALS? What about the reactions of other people he may tell, the internet, etc.?

Liz

[Shatzie]

I can't guarantee what they will learn. One good thing is that most 6 and 9 year olds do not know what ALS is or what having it means so their friends probably won't be a source of information. My family and my ex has agreed to keep the worst details about ALS from the boys at this time and if they find out some other way, we will have to deal with that when it happens. I know that I will answer every question truthfully. It's not that I don't want them to know the gory details, just that I want it to be a gentle and gradual experience.

[KateO]

Shatzie -

I too am sorry for your diagnosis. I was diagnosed in September - yet, I knew in my gut it was ALS since last May.

I have a 12-year old daughter and 14-year old son. My advice to you is: do what feels right for you when talking with your children. Do NOT listen to others trying to tell you what to do! I know I felt a lot of resentment towards people giving me their advice on how/what to tell my kids. I felt like saying, "hey - I do have ALS. But, I can still make my own parenting decisions"

On that note, let me share with you how I've handled the news with my kids (& it is ONLY how it worked for me). I told them when I got home from Johns Hopkins. They knew something was wrong with me. I'd been using a walker since last March, was fatigued and sometimes my speech was slurred. It was obvious to them I was not getting better -rather, worse.

I told them I had ALS and that meant I would continue to get weaker physically and it also meant I would not live as long as if I did not have ALS. Immediately they both asked me, "well, how long will you live?" I said, "I do not know. and, the doctors do not know" ALS is different for everyone and I told them the docs explained to me that I was probably a slow progressor.

Both my children are on the Internet a lot. Yet, I do not think either of them has done much research on ALS. I find that interesting. I suspect it is because they really don't want to know. Both kids help me a lot - out of necessity. Last night we went to dinner and my son helped me get in the truck (basically has to help me step up and then push me in!). My daughter told me this weekend that she didn't want me picking her up from school anymore - that she was going to ride with a friend because she knew it took a lot of my energy. I said, "well, I love picking you up at school" She replied, "that doesn't make sense. Save your energy. I'll see you when I get home". Interesting - huh? While I would never say that "ALS has been a blessing" - because it has not! I would say that my having ALS is really bringing forth the compassion from both of my children. And, as hard as it will be for them when I die I know in my heart that this experience will make them more caring, stronger people.

Best wishes on your journey. By the way, I too work and intend to do so for as long as possible! I have cut back some - but still love it. I travel for work and facilitate national trainings. My next trip is first week March and I am excited.

Warm, warm regards,

[Shatzie]

Thanks, KateO, for your story. One thing that I have learned as a mother is to trust my instincts about my children. We really have amazing abilities if we just listen to ourselves. My little guy is very sensitive. He continues to grieve for his two great-grandmothers who died a year and two years ago. There will be a day when he has to know what this all means, but right now, I chose to leave his little world as unchanged as possible.

[andyvaughn]

Shatzie... I am sorry to hear this... if I may ask, how did they confirm the diagnosis? My husband goes in tomorrow for all day testing, I have no idea what to expect.

[Shatzie]

My EMG with my local neuro was abnormal, all blood tests and MRI before that had been negative, so he sent me to the workup unit at a hospital in Houston where I spent three days undergoing tests by an ALS specialist. My EMG was abnormal there, my reflexes were brisk and I had a reflex action where you hit one knee and the other will jerk mildly too, and my left leg did not react to that like it should. My NCV, spinal tap, more blood tests, and urine was fine and so with the history of my symptoms, my EMG results, and reflexes he diagnosed me with bulbar ALS.

If he is having a spinal tap/lumbar puncture, I have some advice that I learned a little too late about avoiding the spinal headache. Because I had to be poked 4 times before they got enough spinal fluid, I had to have a blood patch to repair it. The radiologist and both the nurses who were there all told me that if you are going to have a spinal tap, make sure that they do it in radiology. That way they can see where they are going and can stick you once only and you will have less chances of a spinal headache. They also had me on my abdomen for the blood patch and it was much more comfortable than in a tight fetal position. Also the head of research for the neurology department told me that she participated in a study of how to avoid a spinal headache. She said that you are to lie flat, no pillow, for at least six hours after the procedure and should drink a caffeinated beverage before, and continue to drink caffeine for the next two days. But you also need to drink lots of water to make up for the diuretic effects of the caffeine.

[andyvaughn]

Thank you Shatzie. It sounds like your journey is closely resembling my husbands. He already had the lumbar puncture. Everything else has also been done, labs, MRI's, etc... everything is normal - with the exception of having elevated protein in his spinal fluid. His reflexes are also "off", so, I guess the EMG is the final tool? Thank you for taking the time to share your experience with me.

[Icanmanz]

Hi Shatzie, this post is for you and KateO. You two are so courageous. You'll seem to be handling it so well. I remember when my son was alive, he was handling his fate better than I was. Know it's easier said than done. I may be wrong about my son handling it better, because no one knows what is going on in another individual's mind. May God bless you both, and your children as well.

Irma

[Sandee]

ONE OF MY MOST CHERISHED FRIENDS HAS BEEN DIAGNOSED WITH ALS. HE WAS JUST DIAGNOSED LAST WEEK. HE IS A WONDERFUL SOUL AND WILL DO ANYTHING FOR ANYONE AND HAS HELPED ME THROUGH MANY DISCOURAGING MOMENTS AND I NEED TO TALK ABOUT IT AND WHAT THIS MEANS TO ME AND I KNOW I WANT TO TALK TO HIM BUT DON'T KNOW HOW TO APPROACH HIM RIGHT NOW AS THIS IS ALL NEW. HE IS OPTIMISTIC AND HIS SPIRITS ARE HIGH. HE BELIEVES IN THE MIND BODY CONNECTION AND THOROUGHLY SAYS HE CAN BEAT THIS BUT FROM WHAT RESEARCH I HAVE DONE THAT GENERALLY ISN'T THE CASE IS IT?, I AM NEW HERE AND SO ANY HELP WILL BE SO VERY, VERY APPRECIATED. THANK YOU ALL AND GOD BLESS YOU.

SANDEE,
WHO IS HURTING A GREAT DEAL RIGHT NOW:cry:

[Sandee]

I am very devastated over this news.,

Sandee

[Shatzie]

Sandee-

If your friend is upbeat about his prognosis, I would encourage you to do what you can to help him stay positive. The ALS specialist who diagnosed me said that the worst thing he believes I have to deal with in the next year is the way people around me act when they find out I have ALS. He says so many people go home after the diagnosis and resign themselves to the inevitable, and those people tend to go downhill fast. You need time right now to get over the news. The first week after my diagnosis, my daughter qualified all statements about the future with "If you're still alive..." or "When you die..." and I knew I had to let her deal with the news her own way. Then last weekend when she said that again, I told her that I am working right now to think about my prognosis as little as possible. I know what having ALS means. I know what ultimately my future will be. But I do not know when those things will happen and right now I chose to believe it will be a long time away. Because I am still active and my symptoms are still mild, I am living my life as close to normal as possible. But at the same time I am planning for the future knowing my prognosis. I think this positive attitute thing will be a delicate balance. Too much reality and you get depressed. Too much positive attitude and you are in denial. Hopefully soon you can find a time to have a frank discussion with your friend in which you let him know all your worries and fears. After that you can follow his lead about developing a positive attitude about this. I know that is hard, because I am by nature a negative person. But in the last several years I have worked to develop a new mindset to help me recover from a lifetime of depression. It does not happen overnight, but I am so happy I think differently now because I have been able to handle this diagnosis much better than I could have even a few years ago.

[Sandee]

Your story does help me and I am so appreciative of that. I posted awhile back that my friend has been sending me videos and emails all day to encourage me. That is his nature and I am trying to be postive but the more research I do on this the more upset I get. His symptoms seem to still be mild and he is moving forward to the very best of his ability he says and he doesn't want pity or sympathy but I just need to talk a little bit. I guess I too just need to kind of let this news settle in my mind abit because I do so want to be there for him when he needs it most and so I am trying to become stronger here and I think this forum will help. Thank you again and GOD bless you.

Sandee