A cure and hope for ALS (also wanting to know about treating excess saliva)Posted by iancu-alina on May 19, 2022 at 11:03 am
Is there a chance for a cure? My husband has ALS ,we have kids a girl 9 years and a boy 5 years old we are helpless no incoming but we hope for a cure .please we need help I don’t want to lose my husband 😔😔😭
What treatment do others take for excess saliva and other symptoms?
MemberMay 19, 2022 at 2:15 pm
Hi…I take cbd pills for saliva
MemberMay 19, 2022 at 11:19 pm
What is CBD?
MemberMay 19, 2022 at 2:29 pm
Sandra, I’m curious about the CBD you take for excess saliva. I’m using atrophine drops and don’t feel it helps all that much.
MemberMay 19, 2022 at 2:53 pm
I take 80mg cbd soft gels at bedtime and 60mg in the morning…I find I don’t have much saliva…I was diagnosed April 2021 and did my own research cause I didn’t know anyone who had this awful disease…I take ALA and L-serine as well
MemberMay 19, 2022 at 3:02 pm
When I take my tudca, pserine it dries my mouth
MemberMay 19, 2022 at 3:05 pm
Sandra, thank you. There’s a CBD place nearby, I think I’ll check it out. However, I need an oil or liquid bc I can’t swallow pills, bulbar sucks! So I have a feeding tube.
MemberMay 19, 2022 at 3:56 pm
Judy, I did take tudca then stopped. Not sure if it even helped. My big issue is in the bulbar area. Extremely difficult to speak, swallow food, soft foods are impossible, luckily I can still walk, well I’m noticing my right leg is weakening so I’m blessed this far…well, to a certain extent.
MemberMay 19, 2022 at 3:38 pm
I take Glycopyrrolate which helps some. I would try all of the above to see which works best and is easy to use without unintentional side effects.
As for a cure …. we are all hopeful. Currently there are some treatments that may help slow the disease. Slowing it down gives more time for additional treatments and someday a cure.
Keep positive and reach out whenever you need input from those fighting ALS just like you and your husband.
MemberMay 19, 2022 at 3:55 pm
As far as cure, not one yet. Many people use Riluzole and Radicava the only two released treatments. At best they slow progression. There are some other drugs in development which also may slow. I use atropine drops myself for saliva and find they do work but short duration.
You need to get to ALS clinic for ongoing advice as well as get active online to ask other pALS questions. The supplements people take are all over the map. You will also find that the disease progression is highly variable among different people. Good luck.
MemberMay 20, 2022 at 4:43 pm
Unfortunately there won’t be a cure in time for any of us who have ALS now to benefit from it. This has often made me angry. I’m so sorry that your husband has ALS and that you are afraid of losing him. We all have the fear of losing our lives to this horrible condition. At some point that will happen since there is no cure for ALS and it gets progressively worse over time. It’s so difficult to lose the functioning in your body ( the ability to eat, speak, move, and breathe). There is little that the doctors can do about it. As far as the issue of excess saliva, I have tried several treatments for that without success. Recently I tried Botox injections into the salivary glands. Next I’ll be trying radiation to the salivary glands. Iancu, best wishes to you and your husband and children.
MemberMay 24, 2022 at 3:03 pm
I’ve tried many things for excess saliva including Botox injections. Finally, I was prescribed Scopolamine patches. They work great. I don’t know why doctors are not familiar with it.
MemberJune 7, 2022 at 5:12 pm
I do the Scopolamine patches. they are a big help with the saliva
MemberMay 24, 2022 at 4:33 pm
Jim, doctors are familiar with Scopolamine patches. I had tried them without success. I’m happy to hear that the Scopolamine patches worked well for you. However, it just depends. What works for one pALS might not work for another pALS. It’s still important to share ideas and information about what has helped or not helped. Maybe something I have shared could help someone else. Maybe something one of you have shared could help me. Let’s all continue to support each other. Thanks so much.
MemberMay 26, 2022 at 9:29 pm
I hate the saliva issue. I take atropine by itself now because the hyoscyamine affects the whole body. I have a neurogenic bladder and using hyo created a constant urge feeling.
I graduated to the big bottles of atropine. I get dry mouth all the time and it tastes like desert after sleeping with the bipap. The only place I get Botox is in my bladder.
I am on a trial drug that failed phase 3. Only 40ish of us tolerated the max dose. It helped me and I’m the only one still taking it. That’s going to stop July 31 since they didn’t make more.
The will beat cure. When, who knows. Not during my lifetime. I just passed my 8th year. There is so much out there and people are looking everywhere for a cure. Please be careful with some of the roadside cures. They may make one ineligible for a clinical trial that may help.
The has been a lot of growth and a lot of disappointment. Dinner things may just need a tweak whereas others need to be flushed.
I wish you well. I’m sorry you have the issues you are having with doctors in your area.
MemberMay 31, 2022 at 3:23 pm
Thankyou everyone for your answers ,i will try some of your advice and see what hapens ,i takcare him and my kids by my self and it feels so bad cause i can’t rest,eat,make a bath ,work…relax and many othere things i used to do …it feels like i am build to be selfish with my self …i feel tierd.And cause i feel tierd i would like to know what you or love ones take for sleep? My husband say he feels stifness in hes legs,arms and pain in hes shoulders that is why he can’t sleep more then one hour or 2 at night …and that kills me slowly.I need some advice what he can take to don’t take to feel more relax and not stif like a dead body.If he could be able to turn arund when he wants in bed ..he takes baclofen but that dosen’t help at all.
MemberMay 31, 2022 at 9:51 pm
Dear Iancu, I am so sorry for your situation. I will offer a few suggestions that might help. First I would get a referral from your primary care physician to the nearest ALS clinic. We’ve been going since every three months since my husband was diagnosed in 2019. There your husband would see a number of specialists to help treat his symptoms. For example, my husband was prescribed Glycopyrrolate for excess saliva and Tizanidine for spasms and stiffness. They may also be able to arrange for a physical therapist to come to your home to help your husband and offer suggestions to you. Your local ALS chapter is another resource to check on. And your husband might be eligible for disability with social security to help with expenses. I hope this is helpful as you will need a lot of support on this journey. Best wishes to you and your little ones.
MemberJune 1, 2022 at 5:40 pm
I am from Romania ,in here there is no asocition,comunity don’t even care,and there is nothing besize baclofen😔 in Romania nobody cares in here you don’t get help ….that makes me more sad 😔😔😔😭😭 We don’t have ALS clinic in Romania ,i fight in court with social services they refus to put me legal as a care givet everithing gose so wrong 😭
MemberJune 2, 2022 at 2:45 pm
There is no known cure that I’m aware of. However, there are a couple of drugs that need to be approved by the FDA which have shown reversal in some. Not full reversal but reversal of symptoms. For instance there is a woman who was completely paralyzed and after one treatment of NurOwn she could move her fingers. There are cases of people improving their speech, improving their walking, improving their breathing, etc. There’s also another drug that fights inflammation Which I believe had also shown symptom reversal in some. Both drug companies are in the process, I believe, of requesting approval but it’s very, very difficult to get the FDA to approve anything. We need backing of the ALS Association but I don’t know that they back either of those treatments. The organization I am ALS is a good one to get involved with. In my opinion they are the ones that got the AACT for ALS passed.
MemberJune 3, 2022 at 8:10 am
Hello Iancu, When I wrote last, with some suggestions. I did not know you were from Romania. I did a little looking and found something that might help you. There’s a website http://www.alsworldwide.org and it has a lot of helpful information and. Facebook page but also a “resource finder”. When I clicked that, I was able to enter Romania, and this is what came up.
Dr. C. Vasilescu Neuromuscular Diseases Association of Romania. Institute of Neurology. C.P. 44-12. Bucharest, Romania RO-75128. Business Phone. 40-1-3306273. FAX 40-1-3213964
I truly hope you are able to find some help here. I wish I could do more.
MemberJune 3, 2022 at 10:51 am
How is the care for ALS different in countries outside the United States? Is that common that they don’t have ALS clinics or ALS Associations and it’s difficult to get any help?
MemberJune 7, 2022 at 4:34 pm
Please don’t give up hope. Eventhough there is no real cure for ALS in modern medicine, some ALS patients have benefitted from alternative treatments such as: integrated or holistic treatments, naturopathy, homeopathy, etc. In fact there are about 50 cases of confirmed ALS reversals. There is very little commonalty in approaches taken by these individuals. Each one of these reversal cases followed a different regiment. Most of these cases are discussed in the Sunday recordings of Healingals.org.
Good luck to you and your family.
MemberJune 9, 2022 at 11:17 am
In Romania there is not a clinc with that ALS …we had or neurologist who confirim that there are not such thing dr C.VASILESCU it is neurologist like all doctors with that profile he do reserch and put diagonses like othere one ..but that is it
MemberJune 14, 2022 at 9:42 pm
I just wondered if you are able to travel to another country in Europe? From what I can see, the UK has many resources, but traveling there and getting to see a doctor might be very hard. Sadly, it doesn’t seem like there are a lot of resources available to many folks in Europe or other parts of the world. I am truly sad about that. As my husband’s caregiver, I know how difficult and stressful it is. And I cannot imagine how you do this job with young children. I mentioned to my husband some time ago that there must be people in Ukraine with ALS and how do they cope with the invasion going on? I surely don’t know how we could do it. I feel fortunate (but sad too) that we are able to easily get help with this awful disease. I really wish I had some way to help.
MemberJune 17, 2022 at 8:09 pm
My neurologist prescribed Scopolamine patches. They were actually working but after using only 2 patches, my husband insisted that I no longer use them. They caused me to have psychotic behavior. I rambled all night long, thought that people were in my home that were not, and my personality was totally changed. My husband had to watch me all night long due to fearing that I might walk out of the house in the middle of the night. I think the straw that broke the camel’s back was when we awoke one morning and I had put my pajama top on backwards. Overall, I can say that it was a short experience but not a very good experience.
MemberAugust 4, 2022 at 3:28 pm
Hi. My husband first used Atropine drops for excessive saliva. That worked for a while and then the issue progressed and it did not work. Then he tried Glycopyrrolate and he did not notice any improvement with that. Then he had Botox injections in his salivary glands. The dosage that works for each individual varies greatly therefore they start with a low dose so as to not cause one to be ‘too dry’. The first dose didn’t help much. The second dose (a little higher a dose) helped some. He is now ready to get his 3rd set of injections. He is going to request a higher dosage and a ‘better’ Botox (we learned that there are different types of Botox and the doctors are dictated by insurance companies to use the lesser effective one first before moving on to the more effective one). His care team is in the process of scheduling his next Botox injections and in the meantime, he is experiencing significant saliva production. His doctor prescribed Hyosyne (Levsin) to use while waiting for the next Botox treatment. So far it seems to be helping. He’s only on his second day of it but he is noticing a difference. His care team is reluctant to prescribe the Scopolamine patch as he has bulbar onset and has full use of his extremities. They are afraid it will cause dizziness and other issues that would hamper his current state of mobility. We have learned that it is all a trial and error process. What works great for one individual may not work as great for another. I hope you found this information helpful. I am very sorry for your husband, you, and your family. Although a cure is not immediately in sight, I feel it is so important to ‘live with ALS’. By that I mean to enjoy every moment, every opportunity, every scent, every sound, every sight….right down to the second of every minute. My husband was diagnosed 9 months ago. Please allow yourself the time you need to adjust to this new way of life. For the first 4 or 5 months, all I could do was cry…..and ask “why him”? I had to get through that stage to be where I am now ‘living with ALS’. I do still cry and ask why but nearly as often, we both do. But we’re living our life.
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