http://www.alsforums.com/forum/blog.php ALSforums is a support group community that provides answers, tips, friendship, care and support to people affected by ALS, MND and PLS. en Tue, 13 May 2008 23:42:44 GMT vBulletin 60 http://www.alsforums.com/forum/images/ibulletin/misc/rss.jpg http://www.alsforums.com/forum/blog.php http://www.alsforums.com/forum/blog.php?b=60 Thu, 08 May 2008 13:10:40 GMT Hello Friends, Rick has recently had good news about his injured leg. The bone surgery was a success, and after nine months of hopping on one... Hello Friends,
Rick has recently had good news about his injured leg. The bone surgery was a success, and after nine months of hopping on one foot, he is now walking without pain or assistance. The bad news is the ALS is still progressing as he is losing strength and feeling in his feet and other leg. He was sceduled to have a spinal tap and muscle biopsy this week, but that was ordered by a new neurologist we met, and our present N canceled it. He agrees that Rick shouldn't lose any portion of a good muscle and to take the risks of a spinal since we know he has "something neuron diseasewise" and don't need to name it. We willnot be going back for six months unless we need help. Rick doesn't want to be part of a study anyway, so isn'tlooking for medications on trial. So, because we don't know what next year will bring, we plan to take a train trip out to the western states to visit our two brothers out there. We are looking forward to the trip, and expect to make the most of whatever time we have for him to be able to walk. He still hasn't gotten his BIpap machine, but has the CPap not working very well. We were told he needed to progress to the B but the doctors don't agree. We are working on that issue. Rick is beginning to get twitches in his toes and has one finger that he cannot use. Please put in your "two cents" if you think this is ALS rather than Huntingtons disease or some other. Thanks for reading, and we look forward to reading your posts. We think of you all and pray for you regularly. Bless you. Marjorie ]]> Marjorie R. Wilcox http://www.alsforums.com/forum/blog.php?b=60 http://www.alsforums.com/forum/blog.php?b=59 Mon, 05 May 2008 15:17:53 GMT This is an update on the condition of my grandson who had brain surgery that I spoke about in my Blog. Here you can see how is doing when he says his... This is an update on the condition of my grandson who had brain surgery that I spoke about in my Blog. Here you can see how is doing when he says his first word, STINKY.

If you look close you can still see the scar on the top of the front of his head. He is a happy baby. His big sister nicknamed him MR. Baby.

Thanks so much for your prayers and support for this little one. He truly is a living miracle.
God Bless.
Capt AL

Baby Daniel first word lol :-D:-D:-D
http://www.youtube.com/watch?v=4U8kHCNxL7s

What a sweetheart and a miracle! ]]> MtPockets http://www.alsforums.com/forum/blog.php?b=59 http://www.alsforums.com/forum/blog.php?b=58 Sun, 04 May 2008 19:13:18 GMT I went to my first MDA/ALS Clinic on Friday in Houston. They really have it down to a science there. There were 40+ patients and everyone had at... I went to my first MDA/ALS Clinic on Friday in Houston. They really have it down to a science there. There were 40+ patients and everyone had at least one family member with them, most had two or three. It started at 8:00 A.M., but I was encouraged by another patient to get there as close to 7:00 A.M. as possible, so we got there at 7:20. I was the fourth person to sign in. I was seen by:

Dietitian
Appel Score Grading
Occupational Therapy Grading
Occupational Therapist
Respiratory Therapist
Pulmonologist
Speech Pathologist
Physical Therapist
MDA Representative
Social Worker
Sleep Lab Doctor
Neurologist
Attorney
Financial Planner

Although I was told to be prepared to stay until 3:00 P.M., because I was the fourth to get there, I was the fourth to leave about 1:15 P.M.

All my tests were very close to what they were when I was diagnosed in February. Some were slightly better, others slightly worse, but they all were in the margin or error due to different testers or just the fact that someone will test slightly different from day to day. So the official word is that there has been NO progression since February. I saw a different neurologist this time and he seconded Dr. Appel's diagnosis of "bulbar ALS with caution". The "with caution" is because I still do not show enough of the UMN symptoms, primarily spacticity, to be given a certain diagosis. So all the news is good. Hopefully Dr. Appel will be right. He predicted that I would either progress so slowly or plateau, and in a year or so we might re-evaluate the diagnosis. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=58 http://www.alsforums.com/forum/blog.php?b=57 Wed, 30 Apr 2008 19:36:26 GMT Tomorrow morning I will be leaving for Houston to go to my first MDA/ALS Clinic. It will be all of the same doctors and therapists that were in on... Tomorrow morning I will be leaving for Houston to go to my first MDA/ALS Clinic. It will be all of the same doctors and therapists that were in on my diagnosis. My parents are going and my daughter, breebylou, is going too. She has posted a few times here. She has been worried and stressed about my diagnosis, so I think that going with me will help her understand it more.

I don't feel like I've progressed any since February, if anything a few symptoms seem slightly better since I have been on the vitamin regimen and Rilutek. So I am in hopes that all my tests will be at least the same, if not better. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=57 http://www.alsforums.com/forum/blog.php?b=56 Fri, 25 Apr 2008 03:11:08 GMT I just had it in my heart to post this. With my own problems lately. And Life in general. I would like to say something about my brother Tim with... I just had it in my heart to post this. With my own problems lately. And Life in general. I would like to say something about my brother Tim with ALS.

Tim, You are an Amazing person. The Inner strength you have, just astonishes me. The wonderful Will and Attitude. You are so Strong. You have always been Caring, Generous, and Giving. All your Life.

My Family always tells me that I will be "Blessed" for everything I do, even with my own illnesses . I tell them, I am already Blessed. I do from my Heart and Spirit. As I do. I get back, like my Heart and Spirt is being fullfiled, over and over again. I never run on empty.

The inside of a person really matters. When Tim was in the hospital in March. I sat back and listened and looked at him in Amazement. The things he had to say and talk about where important, no matter what is was about. His voice is like music to my ears. And to see him, always brings a Smile to my face.

I will always be dedicated to him. Down to the least little thing he needs. I get it.

Tim, You are such an Inspiration in my Life. You don't know how much strength you give me.

I have four brothers and I love them all. I have always been protective of Tim, even though he was older than me. I am so glad that I can be here for him and others.

My point is. The inside of a person with ALS is so important. They still need to express that. We just don't need to forget with assisting them, and everything else going on how amazing they really are. They need us. Physically and Intellectually.

There is nothing I wouldn't do for you my sweet Brother. You are here and now. I wouldn't miss a moment of time that I can spend with you.

Lorie:-D ]]> Lorie http://www.alsforums.com/forum/blog.php?b=56 http://www.alsforums.com/forum/blog.php?b=55 Mon, 21 Apr 2008 22:51:10 GMT Lately I have had an aversion to my mailbox. Now that there is anything really wrong with it, it has just become the harbinger of bad news. Since... Lately I have had an aversion to my mailbox. Now that there is anything really wrong with it, it has just become the harbinger of bad news. Since all those lovely medical bills have been coming since my hospital visit and diagnosis, my stomach wrenches when I go to pull my mail out of the box. I think I have received all the insurance statements now and have an idea of how much I owe. But twice now, including today, I got a wonderful surprise inside doctor bills. Both the radiologist(s) and now the pulmonary doctor discounted my bill as if I were in their network before I could contact them. Unfortunately, the neurologist (my second highest bill after the hospital) would not, even though I sent a letter asking for a reduction and a small payment, I just received another bill. I sent the same letter to the hospital and haven't heard back. But the discount from the doctors that did reduce my rates now totals over $1000, with the $123.10 discount in today's mail. That will make it a little easier to go to the mailbox tomorrow. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=55 http://www.alsforums.com/forum/blog.php?b=53 Sat, 19 Apr 2008 13:24:52 GMT In 2005, I lost my position with my company, which was a good thing. I hated that job. I submitted my resume everywhere and did some contract work... In 2005, I lost my position with my company, which was a good thing. I hated that job. I submitted my resume everywhere and did some contract work with a company in Memphis, TN, while my husband worked heard for Fed EX. In late Summer, 2005, there was a hurricane named Katrina that ripped New Orleans apart. My husband's parents and brother came to stay with us until it was safe for them to go back (lasted about 6 weeks).

Then it happened again, another hurricane named Rita hit the Texas coastline and my family fled to different parts of TX. My father could never regain his strength and we lost him Dec., 2005. :cry:

I was able to spend time with my dad due to the fact that my contract ended in Memphis. ]]> cajuntexusa http://www.alsforums.com/forum/blog.php?b=53 http://www.alsforums.com/forum/blog.php?b=54 Sat, 19 Apr 2008 13:17:07 GMT While I was visiting my family, I was told of a woman (my little sister went to school with) claimed to be the illigent daughter of my brother. My... While I was visiting my family, I was told of a woman (my little sister went to school with) claimed to be the illigent daughter of my brother. My brother disclaims this assertion. My mother told this woman's mother, let's go for a blood test and confirm. They refused so that tells me it was a lie.

It is diffcult for me to believe that someone could and would make a claim such as this only to disrupt my family. Don't need it and don't welcome it.

Now this woman was accepted by my dad's wife and she now occupies his home with her two sons. She kicked her husband (go figure).

Needless to say, there are slugs under rocks. ]]> cajuntexusa http://www.alsforums.com/forum/blog.php?b=54 http://www.alsforums.com/forum/blog.php?b=52 Tue, 08 Apr 2008 01:05:53 GMT Well, my insurance company has sorted through the medical bills from my trip to Houston for diagnosis. I don't know if they all have been filed with the insurance company because no bill or insurance statement has the doctor who diagnosed me, but his bill might be combined with the other neurologist, at least I hope. I have received the bill for my part from the hospital, the radiologist, and the other neurologist I spoke of. It was wonderful to open up the radiologist bill and find out that they automatically discounted my bill as if I were in their network. So I wrote the hospital and the neurologist, enclosed a check for $50 and $25 respectively, and asked if they would extend to me the same discount that they do to those in their network. I have no idea if they will, but it's worth the try. I also appealed to the insurance company over my hospital bill because they did not disclose in their handbook or on their website that there is a 30% off-the-top disallowed amount when you are an outpatient at a hospital that is not in your network. If there is a set amount like that, the members should know that up front.

When I total up all my bills, unless they reduce the charges or the insurance company decides to pay more on my hospital bill, it comes to a little over $8000. Now to some that might not be bad. I had an acquaintance email me and say that since his wife was diagnosed with stomach cancer four years ago, they owe over a million dollars in medical bills. So I don't want to complain, but oweing this much in medical bills terrifies me. I know that I will have to pay it out over a long time at $25 or $50 a month, and I don't want bill collectors calling me about it either.

But down deep I know that the Lord will provide. He has so far. Right now I have just enough for what I need today. I think of the story of the widow who had enough oil and flour to make it through the famine in the Old Testament, and I imagine my money stretching farther and farther. "For my God shall supply all MY needs according to His riches in glory, by Christ Jesus." ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=52 http://www.alsforums.com/forum/blog.php?b=51 Sat, 05 Apr 2008 19:10:15 GMT For the first time, I am blogging from home. It may not be a big deal for you, but going without a computer and internet access from home since the... For the first time, I am blogging from home. It may not be a big deal for you, but going without a computer and internet access from home since the fourth of July last year has been a big deal from me. Since I can compose and post my journal entries on the same day, even on weekends, I have decided to have more creative titles for my posts than just the date I originally wrote it. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=51 http://www.alsforums.com/forum/blog.php?b=50 Wed, 02 Apr 2008 18:24:18 GMT I have almost forgotten what it was like, being able to go on the internet at home. Last July when I got a divorce, I gave my ex the new computer... I have almost forgotten what it was like, being able to go on the internet at home. Last July when I got a divorce, I gave my ex the new computer because he is self employed. So I took the 1999 Dell that we bought brand new and had been relegated to the kids' computer. But between the time it had been disconnected at one house and connected at the other, it had totally fritzed out. It had never been the same since a virus infected it two years ago Christmas, and a computer tech friend had to practically start from scratch to get it up and going. After looking at all the alternatives, used computers and having it repaired again, I decided to not throw good money after bad and would wait until I got my tax return. It wasn't so bad for me to wait, I have internet access at school, but it was especially hard for my daughter who had to do homework and email at either her dad's, my parents', or the library.

Last week I ordered my new Dell. It was the most expensive thing I have ever ordered over the internet and clicking on that "complete purchase" button made my stomach knot up. But it arrived Monday at school safe and sound, and my daughter set it up Monday night. I picked up the self-install kit from the cable company yesterday, but there seems to be something wrong with the new modem they gave us and we will have to trade it out. But we're almost there. Soon I will once again be able to go "Google" something when I think about it, instead of making a list of things to do online at work. I'm almost back to the 21st Century. Now I just need to get a new cell phone! ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=50 http://www.alsforums.com/forum/blog.php?b=49 Wed, 26 Mar 2008 19:29:40 GMT When I was told in Houston that I needed to start thickening my drinks, I was quite a bit reluctant. The thickened drinks that I had every day for... When I was told in Houston that I needed to start thickening my drinks, I was quite a bit reluctant. The thickened drinks that I had every day for breakfast and lunch at the outpatient center were pre-thickened. The orange juice was too thick but tasted good, I didn't like the thickened milk, and I never even opened the thickened iced tea (without the ice). But the PA told me that even though I have just choked mildly a few times on liquids, that all my drinks need to be thickened from now on to prevent aspiration. So it may have taken me several weeks to get this in hand, but I think I have now.

For me taste is very important and I have always been a person who gags easily, so texture is important too. Although they are less expensive and easier to find, I ruled out the powders like Thick-It very quickly. I then found someone on eBay who was selling leftover packets of Simply Thick and Hydra-Aid that she had used for her premature son. I was able to buy enough very cheaply to sample the taste and texture of these. To me they were very in taste, texture, and how easy they are to mix. I found a company called South Mountain Health Supply that was started to help people who need thickeners at a lower cost than regular medical supply companies. Simply Thick was less expensive in packets than Hydra-Aid, so I ordered those, but ordered Hydra-Aid in 64 oz. pump bottles for home, because Simply Thick doesn't sell in bulk like that and it was a better buy for home.

There are some things that I do not like thickened, like iced tea, but I've never been much of tea drinker. I am trying to use this as a way to give up soda pop, because it doesn't taste bad, it just is not such a pleasure to drink thickened. I have used a small manual ice cream maker to make pop into a slush, but I don't know if it is still thick enough by the time it gets to my throat, or if it has mostly melted by then, which defeats the purpose of freezing it. I don't like water straight, so I put one Propel packet in 24 oz. of water and thicken it and the Propel is diluted, but I still get some taste to cover the thickener.

Overall I think I am getting used to it, although I feel thirsty more now that my drinks are thickened, probably because I don't drink as much. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=49 http://www.alsforums.com/forum/blog.php?b=48 Wed, 26 Mar 2008 16:28:56 GMT I had a great intersession week and Spring Break, but it was back to school today. The kids were really quiet, but I think they were still in shock... I had a great intersession week and Spring Break, but it was back to school today. The kids were really quiet, but I think they were still in shock or sleepy from being up late during our two weeks off.

I was really tired after school, but felt better this evening. Besides my busy day at school, I sang a solo with the choir backing me up at three Easter services on Saturday night and Sunday morning and was interviewed by my pastor at each service about how God is working in my life. So I had a lot of nerves this weekend too. My speech is a little rougher today than it has been the last several weeks. Bouncing back is not as easy as it was before my symptoms started. I can definitely tell that it is taking more energy to do the same things. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=48 http://www.alsforums.com/forum/blog.php?b=47 Sat, 22 Mar 2008 18:31:37 GMT I had a strange experience when I went back to my local neurologist on Monday. He proceeded to tell me that he had read all the information that Dr.... I had a strange experience when I went back to my local neurologist on Monday. He proceeded to tell me that he had read all the information that Dr. Appel sent him from my trip to Houston, and that Dr. Appel agreed with him that they neither one know what in the world is wrong with me. It was definitely another Twilight Zone moment. I was mostly speechless while he talked on about this, but when I managed to say something about my diagnosis, he quipped, "You don't have a diagnosis!" At this point I found it pointless to argue with someone who was so convinced so I was glad the visit was short. I walked out of there shaking my head and totally dumbfounded. I wondered who was right. Had Dr. Appel told me one thing and put something more vague in my file or had my neuro decided himself that there wasn't enough evidence for a diagnosis?

So I spent the last few days thinking about this and I decided today to email Dr. Appel's wife, Joan, who is his PA. She quickly responded to my email and said that I was correct. Dr. Appel HAD diagnosed me with bulbar ALS and they would not have registered me with MDA and made an appointment with their MDA/ALS clinic if the diagnosis was still up in the air. She did say that it was a "diagnosis with caution" because my symptoms are mild at this time, but she couldn't understand how my neuro came up with the things he told me.

I have an appointment in May with the MDA/ALS Clinic in Houston, and then in late June in OKC. I am hoping that by going to Oklahoma City to clinic that I will avoid needing to see a neurologist here in Tulsa. Because if I need one here in town, I'm looking for a new one. ]]> Shatzie http://www.alsforums.com/forum/blog.php?b=47 http://www.alsforums.com/forum/blog.php?b=46 Fri, 21 Mar 2008 21:14:57 GMT My Friend, Please Click Here: http://www.youtube.com/watch?v=VdXT-v2hPUA Many, Many of my Friends are right here. Thank you for being there for... My Friend, Please Click Here:

http://www.youtube.com/watch?v=VdXT-v2hPUA

Many, Many of my Friends are right here.
Thank you for being there for me.


Lorie- "Friends are Friends Forever" :-D ]]> Lorie http://www.alsforums.com/forum/blog.php?b=46