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    • #21964
      Iancu Alina
      Participant

      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?

    • #21968
      Sandra mcleod
      Participant

      Hi…I take cbd pills for saliva

    • #21970
      Alma Carr
      Participant

      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.

    • #21971
      Sandra mcleod
      Participant

      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

    • #21972
      Judy Weger
      Participant

      When I take my tudca, pserine it dries my mouth

    • #21973
      Alma Carr
      Participant

      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.

      • #21975
        Alma Carr
        Participant

        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.

    • #21977
      Paul Tavano
      Participant

      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.

    • #21978
      Bill
      Participant

      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.

    • #21984
      Kathy stitz
      Participant

      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.

       

       

       

       

       

       

       

       

    • #22002
      Jim Cowgill
      Participant

      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.

      • #22111
        Ginger
        Participant

        I do the Scopolamine patches. they are a big help with the saliva

    • #22006
      Kathy stitz
      Participant

      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.

    • #22034
      Douglas M Clough
      Participant

      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.

    • #22055
      Iancu Alina
      Participant

      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.

    • #22063
      Gail A
      Participant

      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.

    • #22067
      Iancu Alina
      Participant

      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 😭

    • #22079
      Patricia Manhardt
      Participant

      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.

    • #22085
      Gail A
      Participant

      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.

       

       

    • #22090
      Kathy stitz
      Participant

      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?

      • #22157
        Amanda
        Keymaster

        @Kathy,
        That’s a great question!

    • #22106
      MICHAEL ADACKAPARA
      Participant

      Hi Iancu,

      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.

    • #22123
      Iancu Alina
      Participant

      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

    • #22156
      Gail A
      Participant

      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.

    • #22169
      Patricia
      Participant

      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.

      • This reply was modified 1 week, 6 days ago by Patricia.
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