Kay can not speak at all and swallowing nearly anything is nearly impossible. Louise, Pam They also proposed a feeding tube for my wife, but due to her steady weight they are waiting until she looses weight. Read the original article.
Going to an ALS clinic and to support groups helped us more than I can say. In January 2006 she got a feeding tube because she'd lost 10 pounds in one month. Thank you and God Bless you always. i use words plus to communicate via my computer and i use sign language which is really helpful it helps with spontaneity. Although the rate of progression cannot be predicted, a pattern of progression is noted. and quit walking without a cane, walker or wheelchair before the big fall and broken bones. Laura P.W.
I would be glad to send to any other interested party as well.
We've discussed it, just have written it down yet. At the very end, he had difficulty breathing and used morphine to help the congestion.
Oh, most important, let her be her own person. I'm trying to do most of what you have suggested.
RAN proteins have now been found in 10 different repeat expansion diseases, including Huntington’s disease and Fragile X tremor ataxia syndrome. 180 Replies, My dad was diagnosed in jan 2010,hes in the hospital ,his lungs are being affected so early ,other than other parts!! From a Health care perspective, many little things that you take for granted she will be unable to do, so be kind, and try to place yourself in her shoes, when things get stressed. We know eventually ALS will take his life, and from the looks of it, it can happen at any moment. By the time he was diagnosed, 8 months after the first symptoms, he could no longer eat steak, or other foods that required major chewing. She chose quality, which after seeing how her life was I am glad for her. I just bought her a dry erase board as well. Take Care, About 25% of those eventually diagnosed with ALS have bulbar onset which strikes the brainstem’s corticobulbar area.
5 Replies, http://alsworldwide.org/assets/team/staf f/cvs/alsww_clinic-book-web_copy.pdf ... This section controls muscles in the face, neck and head. Louise, Charlie, i was lucky in the diagnosis department. She loved to talk and thank God for EZ keys. This group is growing but one thing we lack here is the referrals to all the great ALS links out there on the Internet and resources available. Some patients with the C9orf72 mutation develop ALS, others develop frontotemporal dementia and some develop both.
I pray no one else who gets this awful, awful disease will be faced with such a grim decision.
She got a good laugh tho. In this first open-label trial, in which everyone will receive the drug, we will be testing to see if the drug is safe for patients with C9-ALS and if it lowers RAN protein levels in the cerebrospinal fluid. My Dad passed away on New Years Eve of this year after opting to have a trach to help with his breathing difficulties.
Notable ALS patients include New York Yankees baseball star Lou Gehrig (the disease is often called Lou Gehrig’s disease), physicist Stephen Hawking and New Orleans Saints football star Steve Gleason.
I told me mother over and over again, and even after she is gone, I feel it was not enough. My Sister was diagnosed with ALS March 9, 2012. Knowing you are still "going strong" after 2 years is encouraging. My Mom lost her battle with ALS on January 2 of this year. ALS causes these motor neurons to die, resulting in the loss of a patient’s ability to speak, eat, move and breathe. His speech is slurred, he can still eat, he has restrictions like putting his hands over his head ( right one more than the left), combing and blow dryinh hair, putting on his shirt, buttoning pants etc. My Dad was diagnosed in July of 2006 with all Bulbar symtoms. I thought this Discussion might help me (and many others), but I'm hoping we can learn ...
The results in cells very clearly showed that it did. i knew something was not right and i have a smart primary doc and a friend who is a neurologist. Stacy, Thank you so much for writing to me.
When we left they had "loaned" Wanda a "LightWriter" to talk for her even tho she is still talking, a StimPad to help her swallow and talk as long as possible, and arranged for her to ring a BiPAP home as well. i spend a lot of time trying to maintain my weight. Around 15–45% of patients experience pseudobulbar affect, also known as “emotional lability”, which consists of uncontrollable laughter, crying or smiling, attributable to degeneration of bulbar upper motor neurons resulting in exaggeration of motor expressions of emotion. He is now in a LTAC (Long Term Acute Care) hospital. That's a tough one, but it does offer us hope of a longer and better future than we may have expected, and gives us a deep appreciation for the time we do have. 11 Replies, Charlie I agree with you wholeheartedly. Sometimes she has to write (or type) to communicate, but most of the time I can understand her speaking. We know it's different for each person, but it would be nice to know how others have prepared for the different "phases" we will be facing. Charlie. Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Motor neurons transmit signals from our brain to our muscles and allow us to move. We love him dearly, and it is so sad to see him in this condition. My mom's flight was quick, It started with pain in her neck and quickly made its way through her entire body, there was so little time for us to get a grasp on what was happening, the loss of all limbs her speech bounced form one area to the other, no delays! There are various factors causing bulbar … Change ), ALS Fighters – Will Not Surrender Lliving Life, Fighting ALS. Microsoft may earn an Affiliate Commission if you purchase something through recommended links in this article. He is a fighter, but is also tired of being this way for 8 years now. Based on the doctors reports, the signs presented themselves clearly from Oct last year. They were some great people to deal with, and very helpful and "up-beat" even tho they made it clear there was no cure for her diagnosis. My wife was diagnosed with Progressive Bulbar Paralysis / Bulbar Palsy Nov. 6, 2006 by her neurologist. However, Saturday morning, the new doctor on shift said he noticed my father starting to trend SLIGHTLY better. I decided that we should test the FDA-approved diabetes drug metformin after hearing Nahum Sonenberg, a longtime collaborator, present data showing that this drug improved disease in mice with Fragile X syndrome, a disease involving a missing protein. Same thing happened with my mom, and although she did lose quite a bit, she was thin but no unhealthy when she past. Blessings, 85 Replies, I was recently diagnosed with ALS (November 23, 2011). The repeat expansion mutation in C9-ALS and many other neurological diseases occurs in these gene regions not expected to produce proteins. I pray it will save someone from going through what my Dad did. I have been focusing on C9-ALS, which is the most common genetic type of ALS which is caused by a mutation in the C9orf72 gene. i think we have a familial form I don't want to scare you either. Tell her how you feel and tell her often. I did not realize I could do that. my mom has bulbar onset also , the first sign was 10/2009 and then the disease start to be progressive , up to now after three years she is ok and she just lost her voice and ability to eat , she is using gastrostomy tube for feeding , and she is ok , the only big problem is the severe saliva that she cant holding it and she cant swalling it , her hands are more weak than three years before , but comparing to other cases her situation is perfect , something else that my mom was 55 years , and her grandmother also was 55 when she had als !! My brother n’ law was there at the time and did CPR and revived him. She was burning more calories trying to eat than she was putting in. i can't say whether i am just slower than other people in my progression or whether it is a combination of the trial, the antioxidants and other approaches. 272 Replies, I found a few discussions and articles of ALS patients using coconut oil and even magnesium water to slow progression. I am a scientist who studies neurological diseases that run in families, and I have been working hard to find a treatment to stop ALS. I have a feeding tube, I can no longer eat,or speak. Did anyone actually track ... Ranum, Director, Center for NeuroGenetics and Kitzman Family Professor of Molecular Genetics & Microbiology, University of Florida, ALS scientific breakthrough: Diabetes drug metformin shows promise in mouse study for a common type of ALS. I am so sorry about the loss of your mom. Charlie, Hi Patty, We were told my father would not survive and so on a Friday, we made a family decision to withdraw lif support and provide comfort care. The speech therapist recommended she use it for 2 thirty minute intervals (1 hour total) about 4 times a day. I used to think when our dad died that was the most difficult thing I had ever had to endure, this is far worse and honestly I don’t know what else to say or do. Blessings, I'm so thankful my wife has a fantastic group of Dr.'s taking care of her.
And one more time after that when he was placed in ICU. The neuromuscular disabilities associated with bulbar ALS cause a myriad of related symptoms associated with swallowing, speech, and respiration. Peace be with you and your family. Every case is so very different. It is sporadic and not familial and started with twitching and weakness in the legs.
Bless you and your family! Patients with bulbar onset ALS make up an unusual group because of the progressive and multi-system nature of their illness. Let her be sad, but not all day. Sorry, your blog cannot share posts by email. Are you sure you want to delete this reply? We needed help within 2 months and as she lost her independence, we needed more and more help. The BiPAP isn't as easy for her, but she is trying to get used to it. 11 Replies, I am going on 23 years of muscle fasiculations and slow Muscle atrophy of my arms. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that attacks motor neurons in the brain and spinal cord, leading to the wasting away of muscle and loss of movement. Everyone that has written has helped us get a better grasp on what can be expected to happen in an understandable time frame.
i do see a Tibetan doctor who prescribed a diet and herbs and sent me for the acupuncture.