Recently I wrote about my sessions with my speech pathologist, Harvey Ostriecher, and the amazing work he’s done to preserve my ability to be understood. I wrote about the importance of strengthening my swallow. Ironically, at my last Dr’s appointment, with a pulmonary specialist, it was suggested that I look at having a feeding tube installed in my stomach ~ even though I may not use it for years~ because my breathing has now deteriorated to the point where if I’m going to with stand the surgery to implant the feeding tube, I had better do it soon. UGH. WTH? This was a shocking conversation to have – no one had prepared me for this development or even mentioned it as a possibility.
So, I have until Mid January to improve my respiratory capacity and stave off the surgery. We shall see. It has become more and more important to maintain my swallow. I’m a foodie and I love to eat. I even took the certificate level semollier exam in 1998 for crying out loud! Food and fine dining has been an integral part of my life. Athough I have embraced the addition of raw food ( and I strive to have 60-70% of my diet come from Raw or uncooked fruits and vegetables) I am at heart a gourmand. I’ll eat only raw food for 5-6 days a week and then go out to a fabulous restaurant and have whatever my heart desires. That’s how I deal with the other 30% of my diet. Or I will eat raw until dinner, especially in the winter as I get cold and I hate being cold. Soups are definitely on the winter menu.
So you can imagine that a feeding tube would be my idea of hell. I guess I’d eat more raw fruit smoothies that way…but what more information do you need to practice swallowing audibly and stregnthen that muscle??? Not much I’d wager.
If you or someone you know has lived successfully with a feeding tube for a long period of time I’d like to know about it and hear how they did it!! Do tell.
Dear Friend,
I read about your story in the Tribune en route to one of Amy Dickinson’s dumb comments. My neighbor, whose daughter I used to play with as a child and who was like a mother to me, had ALS as well. I know it is hard, but please keep your spirits up. You are one smart, ballsy lady, and I wish you only the best! Please keep in touch, and let me know if there’s any way I can help.
Gail-Tzipporah ; )
Hello, yes I really feel that when you are terminally ill, you are serving your time in hell here on earth!! My wife has MS and people treat her the same way they do with you when you talk, people look like ahe is stupid also, when she walks, they look at her like a freak, no sensitivity at all!! Our culture grows colder more and more everyday!! I adore my wife and would never do anything to hurt her, I am very supportive and I even work two jobs to be able to purchase her much needed medication. My health coverage has a 6500 per person deductable, it is really hard to cover 13,000 dollars a year in medical expenses!! I have diabetes and high blood pressure, but I forget about myself, I just worry about my wife!! She is everything to me!! My whole world, without her I could not go on!! Keep being brave while you face your hell on earth!! I feel your pain everyday!!
Regards
Dan
wow, what a really nice feature in the Chicago Tribune today! I mentioned in a previous comment that my maternal grandmother succumbed to ALS in 1986… my paternal grandmother had laryngeal cancer and lived with a feeding tube for over ten years. I’m sure the prospect of both the operation is both depressing and daunting. Here’s something that may not be directly applicable, but maybe it does give hope to those with fibromyalgia or ALS, MD, etc. http://www.cbsnews.com/video/watch/?id=5975132n pay careful attention to the soldier who grows new muscle on his damaged leg…
Anne Marie- I just read the article about you in the Tribune. From what I read and have seen on your blog, you seem like quite a cool chick! Thank you for your thoughts and sharing your life with the world. As one who lost her mother at a young age to this disease, I feel like I have an instant connection to you. Now I am in my 30s and truly appreciate your thoughts on your daily issues. I feel like I now know what was going on inside my mom that she was too proud to let on to her kid.
Unfortunately, I do not have any advice on the feeding tube issue. I remember watching my mom deal with hers and helping my dad prepare her “meals”. I do remember that she enjoyed a bit of red wine in the tube now and then though!!
Again, thank you. I have become an instant fan!
Hello I am reading your blog!
I want to offer you a word of encouragement.
I do not know if you are a Christian or not.
But count it a blessing that you are a live!
Things happens for reasons and we do not know why!
But God is perfect and He loves you!
So I will keep you in my prayers that during this time you may find peace!
Take care!
hi. i read the article in today’s tribune. First, I would like to encourage to pursue other therapies, EFT to start (see an article here: http://www.emofree.com/Anger-management/ALS-anger-lund.htm) . Second, the fact that you drank so much diet soda in the past, is a big clue as to why this has happened to your body. In truth, if you worked on some other aspects of your health (emotional health, specifically from the past) I seriously believe you will, at the very least, make great improvements in managing your current symptoms. There is so much out there in non- Western medicine that can help you. I certainly am not trying to give you any false hope, but I have seen small miracles myself using EFT and things like essential (young LIVING only) oils, accupuncture, qi gong, that I wanted to just drop a line and tell you that there is still hope. I had a vision in fact, of you completely recovering and truly being able to tell Western medicine KISS my ALS. As an intuitive person, I get a strong feeling that this illness may partially be related to a karmic issue that needs sorting out, but somehow, I do not think that this is the end of your life. Dr. Mercola (www.merola.com) is a good place to visit as well, but starting with the EFT would be a fabulous starting point. You can learn a lot simply from the emofree.com website. The best thing about EFT is you can do it anywhere, any time, any place. Feel free to contact me with further questions. Also, you might want to look at http://www.quantumtechniques.com/
Have you researched the stem cell route. I’ve checked into this for myself but am not sure if it’s a scam. I know there are places in Europe, China, and Mexico that are doing stem cell injections. Let me know if you have any insite on this. Thanks. Sue Robinson
eyesprint@gmail.com
You are living. I read the article about you in the Chicago Tribune. That should be your gift: that you are still here. My family and I are the victims of a number of neurological problems: I had a stroke when I was nine (I am twenty-one, and am more or less fully recovered), my brother is autistic, and has seizures, my cousin was born with half his brain dead, my grandfather has Parkinson’s and dementia. But they are still alive and loving it. I am happy they are still here. I am happy you’re still here because you can still write your story.
You are alive. Your heart is still beating. And that should be your gift for this season. I know it’ll be my family’s.
I’m so sorry to hear about your struggles. You seem articulate, strong, and determined. I wish only the best for you. I’m a nurse and reading your blog helps me to understand the tremendous bravery that patients exhibit.
Hi .. Having grown up in Chi-town, I continue to check the Tribune’s web site most days and was pleased to see the article about you and find out about your blog. Your attitude is much to be admired. I feel we are in somewhat similar circumstances, I’m 45, also unmarried with no kids, and it was quite a shock to my system to have experience 5 small strokes last year. Fortunately, no disability and hopefully, no more. But, it’s always in the back of mind a little. Particularly when I take the ton of drugs that are apparently keeping me alive. Keep up the faith and I will continue to view your blog.
Hi – Reading the article about you today brought back many memories. My sister faced the same issue. Should she get a feeding tube or not? She chose not to have a feeding tube, and eventually stopped eating completely. We have a friend who had a feeding tube and it extended her life exponentially. My sister, however, chose not to extend her life and she succumbed to ALS 2 years ago. She chose to let the disease take its course; she did not want to live without her freedom. I think about her every day. I wish you well. It’s so important to try to maintain a sense of humor and keep your good friends/try to keep an upbeat attitude. It sounds like you are! My heart wishes you the best; I hope this disease is tackled in order to save you and many others.
Hi Anne-
It’s your cousin from Washington State. I heard through the family info trail about your health problems. I am so sorry. After reading your blog, it looks as if you are making the best of a horrible turn of events, so good for you! Although, from what I remember about you, I wouldn’t expect anything less. Keep fighting the fight! I’ll be reading your blog and keeping up with your progress.
Love, Kris
Hi Anne Marie. WOW you are amazing! What a teacher you are to all of us that go about our day not being grateful for the beauty that life really is. Your strength and courage and HUMOR:)has the ability to shift the way we look at our families, our community and our world. Thank you for sharing your story.
Sending you positive thoughts,
Cindy
Hi Anne Marie,
Was awed to read the story about you today in the paper. Maybe or not you would remember me from LEC stuff. I am not surprised at your strength and commitment to make a difference for others within dealing with your health. I always admired your power and commitment and absolute genuineness. (And I remember some rockn’ boots and other accessories you wore!)
I see someone else also mentioned checking out http://www.Mercola.com. I don’t know about cosmic karma, but what I have learned from Dr. Mercola (even just his weekly email newsletter) has altered my health. I encourage you to check out his site as well and look up what he has to say about ALS. I did that today thinking of you. Metabolic Typing (as he mentions) transformed my life. The EFT is pretty darn amazing too. I also encourage you to seek your Creator. I will be thinking and praying for you!
Affectionately,
Megan Bearder
Take care Anne Marie. Even though I am healthy (as far as I know) your story really woke me up! I just turned 48 and am going in for a full physical checkup this Thursday (first in like 15 years)! I am scared but now reading your story in the Tribune I feel dumb for being scared. You are very strong and I admire that. Again take care and follow your heart. SueBeaWho from Wisconsin.
I read your story in the Tribune today. Keep up the faith and stay positive!
My wife’s good friend had ALS and passed away several years ago. I have been a practicing herbalist and supplement taker for many years, and after some research, I concluded that it was possible that my wife’s friend might have contracted ALS from eating a lot of fish. He was known to be a heavy sushi eater; he ate it every day. Her friend had also worked as a teenager in an industrial plant with unsafe pollution standards.
Which brings me to this question (which you do not have to answer on this blog, as I only raise it for you to consider and think about), but are you a heavy fish eater? Or, could it be that living on the Gold Coast exposes you more to air pollution (due to all the vehicle traffic) than someone who lives on a quiet, tree-lined street in the suburbs? Or, were you ever exposed to high pollution, for instance, did you grow up near a coal-fired electric utility plant?
What all of these places/ events have in common is mercury poisoning. I see two other posters have posted the Mercola website, which discusses mercury poisoning as a possible cause. One thing I tried to convey to my wife’s friend was that he needed to get some Chlorella, a natural algae that binds with heavy metals and revoves them safely from the the liver, kidneys, blood and other organs. I consume Chlorella and Spirulina daily as a maintenance item to keep my blood clear and free of pollutants such as heavy metals. You might want to try the same? Of course, always consult your physician before trying anything.
I would also suggest a colon cleansing, if you haven’t tried it yet. I recommend ThreeLac as the ultimate pro-biotic which will cleanse the colon, and along with it, the heavy metals and other parasitic garbage that may be trapped in one’s colon. If you or anyone is interested in where I get my “stuff” such as ThreeLac (a product of Japan) along with Chlorella and Spirulina (also commonly grown and used in Japan), feel free to contact me at acemail2005-clearhead456@yahoo.com.
I do not earn any profits off these ideas–but I can tell you where to go to find them. Mercury poisoning may not be the cause of all ALS (or MS) cases, but there does seem to be a preponderance of evidence that points to it being a cause in perhaps 30% to 50% of ALS cases.
By the way, the wife of our friend did not, as far as I could tell, ever allow her husband to see the suggestions I made about cleansing the body of heavy metals. After I suggested that the sushi might have been a contributing cause, they chose to ignore me. I don’t know if they felt offended, or perhaps they felt he was too far gone for anything to be done?
Anyway, that story ended up with his demise and two very sad kids that he left behind ….but give it some thought!…and also, any other visitors to this forum should at least consider the possibility of heavy metal poisoning caused by eating lots of fish, or heavy cigarette smoke (including second hand smoke), or air pollution by living close to lots of vehicle traffic or that of a coal-powered plant.
Chlorella, Spirulina, ThreeLac, and fiber pills are the things I would consider for trying to remove the heavy metals from the body.
Regards, Mike
Also, I should have mentioned one other common source of mercury poisoning, and that comes from silver dental fillings. If you have silver dental fillings, those contain mercury and may be contributing to ALS (or MS, Lupus, Fibromyalgia). It only takes a tiny bit of mercury to cause real harm in the body. Nerves are often affected by mercury and other heavy metals.
Regards, Mike
My husband had ALS and I was his primary caregiver. He had a fairly rapid progression and chose to be taken off the vent, when it was clear he was close to being “locked in”, less than three months ago. He, like you, had a terrific sense of humor and wonderful fighting spirit. He wrote an entire musical using only a quadjoy that he operated with his mouth. He tried most everything these people are suggesting to you, and trust me, people will suggest things, but in the end, nothing really worked. Don’t listen to anyone who tells you that things you did in the past may have caused this, or that you should try expensive new treatments, it doesn’t help and it’s kind of insulting, to be honest. Don’t people realize that if something out that had worked the thousands with ALS would be all over it??
Anyway, my husband had a feeding tube for three years. He used it only for water and pills at first (ironically it’s liquids and pills that are hardest in the initial stages), it was a godsend for us. He had only 30$ FVC when he went in for his surgery and it was a huge risk, but we did it anyway, because we didn’t have a choice. Make sure they do not try to give you oxygen during surgery, and that you are kept on your bi-pap the whole time. Life with a feeding tube is fairly easy, and for the last two years, my husband could not swallow and after venting, of course, it was impossible, so it was nice to have had that surgery and have it out of the way. It sounds like you have a good team of doctors, and that is huge. Many medical professionals don’t have a clue. I found my best information on the Living With ALS site through Yahoo groups. If you don’t belong to that, join. It’s where I learned about you
Blessings to you, my dear… Love, TJ
Hey Anne Marie-
You are truly a Rock Star! Ed and I are looking forward to coming to your event. Much love, Kate
Dear Anne-Marie,
You continue to touch so many with your humor, outlook and PASSSION FOR LIFE! The article did such an amazing job of capturing your attitude and spirit! You do rock! It is such a privilege and honor to know you….
I also wanted to thank you for putting on the “KISS MY ALS” event to support the research being done by our team at the ALS Therapy Development Institute (ALS TDI) in Cambridge, MA. For those of you who are reading this and don’t know about ALS TDI, I’ll share a bit with you! We have a team of over 30 researchers working daily to discover a treatment to slow or stop ALS for patients living with ALS today. Our team is making amazing strides because of people like Anne-Marie who are standing up to this disease and helping to fuel our research with desperately needed funds. In fact, we have a lead drug candidate that is showing exciting promise in the lab. We hope to partner with a biotech or pharma company to bring this therapeutic to clinical trials ASAP.
Over 86% of every dollar that comes into the lab goes directly to research. I would welcome the opportunity to share more about our vision, mission, plan and approach with anyone who would like to learn more. Of course, you can always check out our site at http://www.als.net.
Your friend in the fight,
Amy Whipple
Midwest Regional Director
ALS Therapy Development Institute
586-254-1560
awhipple@als.net
Anne Marie,
In the moments before I picked up the trib on Sunday I was bithcing and moaning about my financial woes……………i’m glad i read your story. I have to remember to stop being so self centered and to appreciate what i have while it’s here. Time waits for noone. God bless you.
Dear Ms. Schlekeway,
I represent Northbrook/Glenview School District 30 in Northbrook. I read about you in the Tribune on December 14. You are a true inspiration. Our school holds the Lew Blond Memorial 5K Run/Walk every spring, in honor of a teacher of ours who passed away from ALS nine years ago. This year we will hold the 10th annual Lew Blond Run/Walk at 8 AM on May 22 at Maple School, Northbrook. I saw that you are having a fundraiser in February. I would be happy to promote it on our Lew Blond Run website, which can be accessed at http://www.district30.org. Would you consider a reciprocal arrangement? We would love to invite you to attend our event in May. It would be an honor to introduce you to the 750 participants that usually show up.
I look forward to hearing from you…
Marcie’s Journey With ALS – is the name of my blog !
Marcie is my daughter – she will tell you the best thing she ever did was to get a feeding tube called a PEG – in the summer of 2004 – the year before that she only ate what she could drink with a straw -I made her all sorts of drinks in the blender using fresh and rew vegetables- – that was 5 and almost 1/2 years ago when she got her PEG –
Please go to my blog and read about my daughter – read in the April or May of 8 – where you can read about her Before ALS and a littlt into this disease
Marcie is living with ALS for almost 16 years next month – being DX with she was only 23 – she is 39 now – living at home – I and her Dad care for her – she is very independent in her room – she has an Eye Gaze computer that reads her eyes -you can read about this on my blog also – she is even on there web site – and she works for a law firm using her computer -she is a very productive person
so Never Give Up – even knowing you have ALS
contact me if you like – I can tell you more about the feeding tube if you would like me to
Linda Gibson – Arlington, TX
http://linda-frances.blogspot.com
Found You! Here’s a copy of the text I sent you earlier this week, I hope it helps!
I have a condition called sarcoidosis ( you can look it up if you like) which causes me fatigue, (ocasionally)slightly slurred speech, trouble breathing (because of a buildup of white blood cells in my lungs), aching legs, joints, feet, etc. I use QI GONG ( I hope you Do look that up) to regulate my condition. It allows me to function every day WITHOUT the doctor prescribed drugs (PREDNEZONE), and with more energy and peace in my life. ‘Qi Gong for beginners’ by Stanley Wilson is a ten dollar book you can pick up on amazon or at borders that will take you through a series of EASY stretches and breathing techniques. I chose to share this particular book, because the descriptions are very clear with easy to follow photos. Cheaper than a doctor’s visit anyway…
Damon Storm