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We’ve never met, but I read your blog posts and wanted to write and say “thank you”. Your blog, because of its frankness and honesty, is a beautiful thing. Please keep writing. I work for an ALS research organization, and your voice and the story of your journey – and the voices, stories, and journeys of others with ALS – is what many of us think about first thing in the morning, and before we go to sleep at night, and in our dreams. It’s what keeps many of us focused and deeply committed to the goal. Please know that there are many dedicated and passionate and brilliant people working very hard to find treatments for ALS. That may not provide much solace for what you’re going through now, but I want you to know that we are listening, and you motivate us to do more, and work harder, and keep going.
It’s been a privilege getting to know you a little bit through your blog. Thank you.
Thank you very much for your kind words. I’m thankful for people like you with such dedication and commitment to this cause, and it does bring some solace to be remindeded as well as inspiration to keep going.
I am enjoying your blogs. I grew up in the same neighborhood that Tony lived in. Long Long ago. tony was a friend of my older brother. you wrote on your post about assistive dying. Is this even an option? I thought it was against the law. I was just wondering. I feel some people would like that option. thanks for sharing your life with us..
Right now only two states, Oregon and Washington, have enacted Death with Dignity. It’s not what most people imagine or fear. If more people become informed, the less resistance there will be. It would be great if all states offered this option to the terminally ill. I encourage you to visit http://www.deathwithdignity.org and learn more. As we all know, knowledge is power.
I mentioned you to Tony, he says hello.
I’m really glad you enjoy my blog. I plan to keep the posts coming as often as I can,
Update: With Governor Peter Shumlin’s signature on May 20,2013, Vermont became the third state to enact a Death with Dignity law . It went into effect immediately. This is the result of a decade long emotionally charged debate with Death with Dignity National Center leading the movement. I encourage all to visit their site to learn more about them in general and how you can with help this cause for all states. Every person should have the right to live and die with dignity. I ask and hope you will read with an open mind. This may become much more personal to you some day because of your own or a loved one’s death.
Hello April, my name is Theresa Cato and I am your sisters mother in law, Patsy’s best friend. I just wanted to tell you that I have just joined your blog and am in awe of your courage. Awareness is such an important thing and your blog is certainly doing it! I think we may have met at Kevin and Julie’s wedding. I was the lady taking all the pictures. My thoughts and prayers are with you.
Hi Theresa, thank you for joining my blog. Great pictures were taken and wonderful memories preserved at their wedding. I appreciate the compliments of me being courageous. It is a morale booster to hear although I don’t consider myself courageous. ALS has forced me to step out of my comfort zone in many ways, but I wish I could do much more. It’s the same as stopping to help an injured person in a car accident. I know I would, and like to think everyone would, instinctually stop to help. I hope to see you again. Maybe while enjoying some of Patsy’s great food.
Yes! April, Patsy does make really great food! We will definitely have to try to do that!
I just read your blog, and WOW. You descried it to a “T”. All the way from testing, doctors visits, and the not knowing to finding out. I was just diagnosed with ALS myself 2 weeks ago. I am so glad you’re doing your blogs. To tell the story of living with ALS. To let people know what battles we have before us. And let people know WE ARE NOT ALONE AND WE ARE STRONG.
Thank you so much, Bob Yarborough
I’m so glad you found my blog and that you feel I’m describing it right. When I chose to start this I was concerned people who were progressing differently than me would feel misrepresented by my words because of the different ways ALS can begin and the differences in speed of progression. I have found even in two people beginning and advancing very differently, there is still so much in common.
It saddens me to read of your newly confirmed diagnosis. At the same time I can see you’re taking this on with a fighting spirit and with the ups and downs to come ahead that’s very important. As you said, WE ARE NOT ALONE AND WE ARE STRONG. Please never forget that. Stay strong, but don’t allow guilt to take over in times you don’t feel so strong. It’s normal and healthy with this cruel beast we’re dealing with.
Thank you for reading my blog and for the message. I hope you continue to follow and find it helpful. We’re all in this together!
Hi April, found you on Twitter. I was diagnosed in April 2012 and have been going through the ups and downs with first finding out you’re dying to actually see it happening to you! I look forward too catching up on your blog and becoming a part of our journey!
Welcome! So glad you found me, Jim. I’m very familiar with the ups and downs. Being told you’re dying then actually seeing and feeling it happen as you lose abilities. I hope you can easily relate to my blog and I’m glad you joined!
I have been following your blog because I am extremely afraid of getting ALS. It isy worst nightmare. I am praying for you to be among the first to be cured. I am concerned that you haven’t updated your blog in some time. I hope all is going well. John
I hope you are able to overcome your fears of getting ALS. It is extremely unlikely, especially if it’s not in your family genetics and you would know if it was. I appreciate your concern, I’m doing very well and hoping for a treatment and eventually a cure for all with ALS and other neurodegenerative diseases. Take care, April
I’m not quite sure of what to say. I have been reading about ALS research since 1979 when my father was diagnosed with the disease. There have been many companies that have tried to find a cure, but none have succeeded. I hope for you and the others that this is the one. I know that it is difficult to stay positive all the time, but do the best that you can. Please know that there are many people pulling for you and hoping for the best. Take care.
What you said is very nice. I am sorry about your Father and I think it’s great that you stay informed with what’s going on in research 35 years later. I imagine that day 35 years ago can still come at times. Being one to have had the procedure I have reason to believe this is the one.
Thank you for the message. I am working at staying positive and it’s great having the support of my family, friends and so many complete strangers.
Your story is very inspiring. I have a nephew that works in the cancer pain research sector and trial results are so very important. I am glad things are improving for you. How are the other patients doing that are in your trial ?
Thank you, it’s nice to be told I’m an inspiration. At this time I don’t have any information about the other trial participants. I’m looking forward to finding out along with everyone else. I hope it’s all positive.
Evidently my First TWO posts didn’t go through, but I saved it on Word, so I will give this a second shot here:
First off I want to just thank you for giving me an opportunity to read your thoughts about how life is.
I am a 41 year old male on disability for Intractable Spine Pain from Surgery/genetic spinal disorder, I suffer from Chronic Fatigue Syndrome in which my lungs just inflame to where it feels like it is pushing my upper back, ribs and chest out.
That said: I am very Empathetic to other suffers in life, whether it be any type of discomfort…once I experience I wish no one else to go through anything similar.
I am sorry you are experiencing this horrible disease.
I will be truthful, I am on disability and found the ability that I can trade stocks pretty well and was actually invested in CUR or Neuralstem and a guy wrote an article with your blog web address in it…so that is how I discovered you.
Well, not sure you read comments or if this will work, but I will end in saying I wish you the very best and I feel for you. I wish we could all retain our health and there was a single magic pill.
Once again, I really hope that you get better and continue to live life to its fullest and stay Exciting about Living…something I only have when I have a good day; which has been a very long time now.
I personally am experiencing so much flat out discomfort and pain that I don’t feel like moving.
I live in Nebraska and the cold weather makes me very stiff.
OK, that’s it.
I wish you and your Loved Ones Health, Happiness and a little Prosperity never hurts.
I plan to follow your story…I viewed you Video the day after surgery and it’s amazing you were able to even function.
Well, once again…I just want to say Good Luck to you, man I hope you feel good and can live. Trust, I am reclined or in a dang bed most of the time…with the exception of a couple warm months out of the year when I feel limber enough to perform physical activity.
Alright, that is it.
Wait a sec: One Question…do you have the opportunity have more injections of these neural stem cells or is this just a one time injection. I wish they could just do it with a very small incision, I was surprised about your incision size. I had Laser surgery in Tampa and the incision was very small. Alright, well I wish you well and I am so sorry you have to go through this.
I apologize your first comments were missed. I do read them all.
I see you’ve been through a lot of pain. I too care deeply seeing or knowing someone suffering no matter the condition. I’m sorry you go through so much. I know a lot factors into moving but it seems Nebraska isn’t the state for you in your condition. I do hope you’re able to find relief.
I see no cure all magic pill, but I know research is advancing like never before all over the world. I see a future of many conditions that now only have palliative care finally being treatable.
I feel very positive about my experience in this study and it’s future although it’s important to keep in mind it is still a study in phase II. I go back for my quarterly exam very soon and am looking forward to it. I really can’t wait for all stages of the study to be complete since I do feel positive about it being a real treatment. Hopefully this happens sooner than later because people are dying as I write this and it’s heartbreaking. We need a treatment/cure right now.
I imagine people hear spine surgery and don’t think much of it. There are laser procedures and much less invasive procedures in general than not too long ago for various spine/disc issues. This is not a typical spine surgery. The injections are made directly in the grey matter of the spinal cord. This has never been done before this study. I imagine there will be a smaller incision eventually, but I have no scar complaints. I had 20 injections, 10 on each side of the spinal cord. This totaled 4,000,000 stem cells injected. I don’t know if I’ll have the opportunity for more injections. I can say what I did have is cervical injections. This is the area that controls breathing, which is most often the cause of death with ALS.
Every day I plan to blog tomorrow, but I don’t say that anymore. I take it day by day.
Again, I do hope you find relief from the pain your dealing with. Take care.
I am so glad. You have this blog as my husband “Larry” also has als and was diagnosed in 2011 at Emory by Dr. Glass. Larry is now confined to a wheelchair. He takes slot of prescribed medicine and sleeps slot. I wish he would talk to me about his illness and share his thoughts but he is very quiet and I’m sure he’s depressed. You are helping me understand how he must be feeling and I thank you for being so open. I pray there will be progress in finding a cure for this terrible disease.
I’m sorry you and your family are dealing with this. There are so many of us doing our best to cope in our own way. It’s often a tough illness for an outsider to fully grasp. As a person with ALS, I’ve had my times of just wanting to hide and not think or talk of it. It’s easy to get stuck thinking about the inevitable end and wondering exactly how it will happen as well as everything leading to it. It is a scary thought to face. I have found my outlet from those constant thoughts primarily through writing about it. I don’t know anything about your husband but I hope he is able to find some peace in something he enjoys. I know that’s easier said than done. I just know having a purpose for me has made a big difference.
This is true for you as well. You’re going through this nightmare with him. You also need to have time away from it all. I hope you are getting that. It will help you and make it easier for you to be patient with him. Never give up on a treatment and cure. I know it’s hard when feeling all hope is lost right now, but we can’t let it win. I wish you and Larry the best in dealing with this and hope you find a way to spend some quality time together that you both enjoy. That alone boosts morale and takes the fear away if just for a day or even a few hours. The more you find enjoyable things to do, the longer the fear stays away. Lastly, always remember you’re not alone in this and don’t be afraid to reach out to others. Contact me anytime public or private. Take care.
April, Thank you for all off this information. My daughter was diagnosed with ALS this year and she has been on an emotional roller coaster ever sense. It is the sites like yours that really help. We are trying to get her in at Emory ALS Clinic in Atlanta. Say a prayer for her as we will be saying one for you as well.
I’m very sorry to hear of your daughter’s diagnosis. The news takes time, it’s a very hard thing to hear and grasp. I know the roller coaster very well, the first several months were very hard for me as well. Since then, it has smooth periods, but it certainly still goes upside down at times. I do have better ways of handling it now though and she will too. This is a hard diagnosis for the whole family. Certainly not what a father wants to hear. I hope you are seeking out support in every way possible. Please know, there will be days ahead with laughter. It’s not over. I do hope she is able to get into Emory ALS Clinic. If not, please don’t think there’s nowhere else. There are many great ALS clinics with great research going on as well as the opportunity to participate in clinical trials. Thanks you for the prayers and I send it all back in return to your daughter, you and all who love her.
I have been having health problems for quite a while and in the past had been diagnosed with having chronic lyme and rocky mountain spotted fever. i have received treatment for both and although I don’t feel I’ve ever been 100% normal since my diagnosis, I had a huge health scare that started in February that was unlike anything I ever experienced before.
My grandmother died of ALS several years ago, and although I know that familial ALS is not very common, I am afraid that my new symptoms might be the beginning manifestations of ALS and not related to the previous tick borne infections. Am I just being paranoid? I don’t know.
I ran across your blog while looking for information on muscular degeneration. I have had some muscle loss on my left calf, twitching in different muscle groups, and am not able to wear heals anymore. I also have dysphagia, swallowing problems and issues with breathing. Some of the changes you describe with regards to your muscles and calf really resonate with what I’m going through.
I am sorry for rambling on – but I’m just very scared and short of sounding like a hypochondriac, this is a very lonely journey. At this point, it might be early to really figure out what’s going on my body but Dr’s have ruled out MS and MG.
I know that your time and energy are very valuable and I apologize for using up much of it – but I want to thank you for using your experience to help others. I appreciate your honesty and boldness. I just found your blog this afternoon so it will take me several days to catch up – but THANKS again.
I’m trying to catch up on all your blogs. Great stuff. This inspires me to write about my experience making a documentary about ALS. I usually prefer making videos to writing, but it must be done and your blog is inspiring me. Thank you! And thank you so much for contributing to my documentary campaign. it was a beautiful surprise.
How many Stem cell treatments did you get?
April, I too have ALS (54), and I too am amazed that I worry about my weight still. Just shows that we’re still us, just with ALS!
Thanks for writing so openly about everything, it helps more than you know.
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