Forum Replies Created

  • jan-ca-pals

    Member
    December 9, 2022 at 1:18 am in reply to: Feeding Tube and Syringe

    I was loosing about 5-7 pounds a month because I could not chew, swallow and haven’t been able to speak for two years.  At that time I weighed150# and at 5’4″ that was a bit too much. About 6 months ago I got my feeding tube, than I weighed 111#.  My supplies are delivered from a local Los Angeles distributor and have been incorrect the first 4 out of 6 times. Hopefully, they got it straight now.

    AMSINO AMSure AS115 syringe,  4×4 non-woven squares, Nestle Nutren 2.0, 500 calories… are the products that I receive for the past two months. My weight went down to an even 100# (very scary) but I believe I am on tract now at 103.5 and hopefully gaining. I weigh every morning after I use the bathroom and keep a log of my weight.

  • jan-ca-pals

    Member
    December 1, 2022 at 12:02 am in reply to: Feeding Tube and Syringe

    I am not certain I understand your statement… but feeding tubes and syringes are sooooo important that I thought I would write and ask you to please clarify.
    Trouble? What sort of trouble?
    New feeding tube? How old is the old one? How new is the new one?
    How is the old one different than the new one? In what ways?
    Syringes? What types do you have?

    I got my feeding tube in July so rather new at all this… still adusting to the produducts, etc.,etc., etc. and trying to increase my weight. Currently, I am at 102 lbs! Not good.

    Thank you for starting this post, I hope that others will add their helpful hints. There are so many unaswered questions, Living alone does not make it any easier.

  • jan-ca-pals

    Member
    August 19, 2022 at 8:47 am in reply to: EXCESS MUCUS

    It is forum topics like this, in my opinion, are most helpful to PALS!!!

    I have the same/simular siliva-mucus-drooling problem 🙁 My Nurologist perscribed Atropine drops and I am unable to move my tounge, have to manually lift my tounge (with my fingers) and try to squeeze out a couple drops. The process worked for a while.

    Now, that doesn’t really do-it for me anymore…
    I don’t have the strength to squeeze that tiny plastc tube; 1 1/2″ x 1/4″. Sad 🙁

    Creativity to the rescue—> I have a tiny, tiny, tiny demi-tasse sugar spoon, so I put 3 sometimes 4 drops in the spoon, lift my tounge (with my fingers), insert spoon, tip spoon over…problem solved!

    Lately, I don’t have enough strength in my right hand/arm to even squeeze out a few drops, so the only way I now squeeze that small plastc bottle is to use a pair of regular pliers. I squeeze the drops into my tiny spoon, lift my tounge and I can taste that the drops are in about the right place.

    You might ask does Atropine work? Well, I really don’t use it that much… in a day, maybe once or twice… so Iam not sure… it helps a little. I doubt it is expensive, insurance pays for it 100%.

    When I look at my 25+ year old black and kind of rusty looking pliers, I sort of yearn for a pair of those painted white and pink and flowerered “girlie looking” pliers that I used to see at places like Michaels or craft stores. I always thought I would feel embarassed if anyone saw me doing a project with that type of tool. Now, I think it would be pretty cool to have a pair of those “pretty pliers” sitting on my kitchen counter top 🙂

    At my last three clinic appointments, my doctor suggested botox… next time I will say OK, I am ready… ‘hope it works for me. As Jim mentioned above: it’s all
    “trial and error”.
    A baby takes a step and falls, maybe cries a little, sometimes laughs, but gets up and tries again. And again. “Rest assured it gets a lot better.” Words of wisdom… T.Y. Jim.

  • jan-ca-pals

    Member
    June 28, 2022 at 3:00 am in reply to: In Memory of Rick Jobus

    What? Oh no… How SAD… he was so cleaver with words and had such an exceptional talent for writing! I would read and reread each post several times studying how he was grammaticly correct and creative as he played with his words: all the while having deep psycological meaning interwoven. The last essay that he wrote aluded to his concern about the end of his life (as I read it).
    RIP my friend and may you teach those Angels up there a thing or two about music and song!
    You will be missed 🙁

  • In my opinion, you watch a movie or series to be entertained and folks do have a variety
    of definitions for entertainment. For me, when a movie or series is over, I want to have that feel-good feeling, be hopeful to recommend it to friends and know it wasn’t a waste of my (precious) time. In other words, 5 out of 5 stars!!!

    If two out of two people rate Solos: not worth watching, gave them nightmares, depressive, painful to watch/not easy to watch, disturbing, negative/nothing positive… than for me, it would be a big waste of my (again) precious… time! Zero stars.

    Ohhhhh YES, awareness is indeed important: I totally agree with that. When I was first diagnosed with ALS, I really knew nothing about it and spent everyday for the next two weeks reading everything that I could find online: everyday sinking further into a deep depression.

    Fortunately, I buried myself behind the shield of the Covid quarantine and did not see or tell anyone close to me about my diagnosis for well over a year.

    Depression really set in and it took me that entire year before I started a slow spiral upwards. Now, without your being judgmental of how I shared my new label: “I have ALS”… I had to feel comfortable with it before I had the courage to say it out loud and tell others. Alone is a real painful place to be. Sad. But I had to deal with it the only way I knew how.

    So when it comes to any depressing movie, thought, news, wars, even people… I want to live in LA-La Land. I don’t need zero stars in my life! Maybe that is not a realistic attitude but that is how I am surviving for right now. My center is 5 stars!

    Thank you for letting us know about Solos and to Mark and Fran for your honest review.

  • jan-ca-pals

    Member
    January 12, 2022 at 1:31 am in reply to: Applying for disability and medicare

    Opps, please add: per week… 10-15 emails per week.

  • jan-ca-pals

    Member
    January 12, 2022 at 1:29 am in reply to: Applying for disability and medicare

    Lisa and Dustin offered very easy, detailed, everyday talk, understandable, help to get through this disability/Medicare maze, thank you for that 🙂

    I don’t believe it is very professional for a lead to answer with a link, just my opinion.

    Thomas, I couldn’t agree more. There are some days where I received 6, yes SIX emails and TEN to FIFTEEN emails from the “organization”. Too many employees and not enough work for them? They must also be giving out my address to other individuals because you know, if there is a persons name on the from line and you did not give that person your email address, it is Just unsolicited junk mail. Although it is annoying to receive unsolicited junk mail, the easy fix is just to NOT EVEN OPEN and send it to SPAM. I have stopped trying to use unsubscribe, takes too much time, so spam is my friend. The reason I opened this email—–> it said FORUM!!!
    Now that is something for me and worth reading. I am glad I did! ‘Just saying…

  • jan-ca-pals

    Member
    January 12, 2022 at 12:45 am in reply to: Teeth and Bulbar ALS

    I received my diagnosis one year ago January 2021 and biting my cheeks is a daily occurrence. You know how painful that is and a sore can develop. I went to CVS and bought something for cancer sores. I try to dry that part of my cheek or lower lip and put that on; I try not to get that area wet right away, yes it burns/stings. Let it dry and it seems to numb that area… it works for me. The next day it is all healed.

    In one year I have lost my ability to talk, chew and now swallowing is even a problem. Everything I eat I put in a blender; that seems to go down ok. Water, Juice, milk are my problem now. I use “Thick-it” (Costco is the cheapest, of course it comes in a Costco size container) I make a drink with half ice so I do get some water down that way. I put milk in the blender with my “main course” so I am eating a creamed soup every day and breakfast is a smoothie with milk, fruit, protein powder and other supplements. I don’t have enough strength to suck on a straw anymore, I can’t even blow out a candle

    I also yawn a lot, maybe 5-10 times in a row and drooling is a major problem. Do any of you yawn and drool??? OMG! ‘Can’t believe how my life has changed! It has!!!

  • jan-ca-pals

    Member
    December 14, 2021 at 11:07 pm in reply to: artificial voice/speech equipment

    This Thursday, December 16th, my Speech Therapist set up an appointment with a rep from Tobii Dynavox. Currently, I use a pen and notebook, dry erase board, “Notes” on my iphone and texting. I have not been able to use the telephone for most of this year. I manage, not easy… and sometimes I ask one of the nurses to make a “business” type of phone call for me. My big frustration is I cannot text as fast as a 15 year-old!

    I really don’t think I’m ready for a Tobii (and hope I never will be). I watched most of the Tobii videos on youtube; there were not many viewers, they were put out years ago and the comment section was turned off… which is a major red flag in my book!

    Your suggestions are all great, I will make a list of every recommendation and follow-up on them.

    Also, what about the cost? Does insurance pay for it? All of your suggestions are sincerely appreciated… thanks 🙂

    FYI: I am on Riluzole (50mg 2x) for this entire year (having a major problem swallowing)and look forward to taking the new oral film that dissolves on your tongue. Plus, Radacava over 75 infusions and have all the pinholes to prove it!

  • jan-ca-pals

    Member
    December 14, 2021 at 10:14 pm in reply to: salivation

    I have had this problem for the past several months and it is getting worse every day.
    It is mostly when I try to eat or drink something and recently I noticed when I’m leaning forward or looking down… it seems like it just starts up for no reason. I do not have any problem during the night when I sleep, no drooling problem then. I understand your doctor can prescribe something… I hate to take one more drug, as I am now on both Riluzole and Radacava. Hopefully, others that have this problem will be able to give us some advice.

  • jan-ca-pals

    Member
    November 9, 2021 at 10:29 pm in reply to: Riluzole and Radicava

    Thank you Sonsu for starting this post, I was lucky to find it 🙂   I usually get 2-3 emails daily from ALS and honestly with that many… I now refuse to even bother to open them up—> overload!

    Nothing is really new to prevent, stop or reverse ALS as of now.  Reading more that 15 minutes of this stuff is depressing me for the whole day, so why bother and I don’t need to educate myself any more on ALS. ‘Just my opinion…

    What I am really interested in is a question such as yours and similar questions/discussions/information, on how you/we are feeling, reacting, progressing,  problems, solutions, fears, challenges, successes…  ALS is not common, so it is not often that one of us can say… oh, my neighbor, or I have a friend, or I just overheard someone at the supper market… typically, that doesn’t happen in our world.

    I believe what we all need is a friend, afriend with ALS that we can really talk to.

    So here goes, first symptom June 2020, diagnosed (bulbar) January 2021.  On both: Riluzole in January and after logistical/manufacturer/financial complications, started Radacava late June 2021 at local hospital.  This week I will complete my  65th Radacava infusion!  WOW!!!

    I’m not sure how to answer your question: “how is it working?”  Hard to say…  In January 2021, I was able to talk, but with a little slurring and able to eat normally.  Now 11 months later, I cannot speak at all, I carry around a pad and  pen, a friend bought a dry erase board and that works pretty good, plus sometimes I use “notes’ on my iphone. Unable to make/use the phone.  I would use notes all the time, but I don’t type every fast ’cause I’m not 12 or 13 years old!  So blessed to be able to text now days!!!

    Also, because I cannot eat normally, (lost weight),  not drinking water,  🙁  my veins appear to be popping out, I mean are raised and more visible.  In the past year,  my skin seems very wrinkled,… water is really the fountain of youth!  Yes, I use Thick-it… hate that slimy stuff, but am getting used to it.  Yes, I enjoy cooking, but have to put everything in the blender: that goes down pretty good. “I eat to live, not live to eat,” Biblical or Benjamin Franklin?

    Are you on R&R ?  How is that working for you?

    If R&R is supposed to be good for me… my question is how would I be without it?

    Don’t know! Thoughts???

    From your new friend, willing to listen and share.  .  .  .  .

  • jan-ca-pals

    Member
    November 4, 2021 at 4:25 pm in reply to: Thanksgiving 2021

    As of now, I DO NOT have any plans for Thanksgiving. In the past, I have hosted many, many Thanksgiving dinners and believe it is one of the most important days of the year.

    Family, friends, laughter, excellent food, etc.,  a special day to be thankful for all the blessings we have… all in all, just the best holiday!  In conversation with friends, when the topic of  favorite meals comes up, I have always said: Thanksgiving… traditional turkey dinner!!! And of course, the left-overs!

    So as to my plans…kind of tough when you live alone;  they are the same as last year.  I ordered a take-out Turkey dinner from Denney’s… (for one) it was quite good and will probably do that again this year.

    Only one major change: because I can not chew or swallow this year, I will  take the turkey, gravy, veggies and put them in my blender……probably be real good over the mashed potatoes!  Yum!!! That will go down 🙂   See? Lots to be grateful for! No, I don’t feel sorry for myself… however,  just a bit sad. There are many folks, some dead, some in hospitals… that wish/wished they were as blessed as I am.

    Well Kathy, glad you asked (1st one to do that) . . . . . . . . .

    now I know what I will be doing, yes, I have a plan!

  • jan-ca-pals

    Member
    August 27, 2021 at 3:40 am in reply to: No longer eating by mouth

    I have been introduced to the swallow test: I have had two! Yea,.. what fun!!! The first was in the Laryngologist office, scope with video camera down the throat, applesauce, cracker, pudding and a viewing on a flat screen. About six months later I had a second swallow test in the hospital with three similar types of food. The food was covered in barium (a white powder) that shows up on a video type of Ex-ray machine. Do you think a barium Ex-ray test is the same as Fluoroscopy test? Or different?

    My video test must have been pretty good because they gave me two discs, one for me to give to my doctor and one for myself. Perhaps, my disc is to autograph and frame or for a future audition? Not sure exactly what I’ll do with mine since I don’t have a disc player anymore and I donated all my CD’s a few years back. Do they still sell them?

    Mark, I never had a PT(physical therapist) or a SLP(Speech Language Pathologist),… had to look that one up 🙂 ‘Went to a Speech Therapist for about six months but ALS did not allow my tongue to cooperate. So basically,… I am a drop-out!

    I’ll confess I don’t know much/anything about the sphincter muscles and YES! if it might possibly, even a smidgen, help me with my speech, I would love to hear all about sphincter muscle exercises. Please?

    Sorry to hear about your lung and reflux problem last winter, I’m certain doing those exercises will make this coming winter a lot easier for you!

    Ohhhh,.. and about the pelvic floor muscles,… lets discuss another time 🙂

  • jan-ca-pals

    Member
    August 25, 2021 at 2:12 am in reply to: No longer eating by mouth

    It is hard to say when ALS started for me: was it January, 2020 when I suddenly got sick and three days later my neighbor drove me to Urgent Care at 8:30 on a Friday night?  I was diagnosed with Pneumonia and Bronchitis, both a virus.  Or was it in April that year?(I was self quarantined since February 24th because of COVID)  I decided to go for a walk that evening figuring that I  would be safe.  It only took a half a block before I started shivering and figured I ought to have put on a warmer jacket.  From that night on,  my left jaw would shiver, quiver, shake,… was that when ALS started?  I search the internet.  Nothing.  Going back to Pneumonia and Bronchitis,… since that time, my voice always sounded like I had a cold or just getting over laryngitis.  One doctor said I might have had the virus COVID and the excessive coughing “triggered” a weakness in my throat area. The quivering of my jaw continued.  Who knows?

    July, 2020 started a round of Doctors, Specialists, Therapists. tests and in February, 2021, I started Riluzole and now am on Radacava.  Oh,  problem with my jaw? was actually tremors.

    Now, I am unable to speak, drinking water is impossible and I cut up my food as if I was a two year old toddler.  I agree with Carol, I want nothing to do with the challenge of going to a restaurant with a group of people.  I eat alone (I live alone and that makes it easier for me) and eat my meals usually in front of my laptop.  I am mindful of every bite I take and I chew and chew. Yes, I choke sometimes and go thru several napkins at every meal.  Ohhhh, that salvia, I mean I’m a pretty classy lady,… and now I’m drooling? Yes, excessively!

    Elaine, have you tried Thick-it?  My Speech Therapist recommended it.  It’s not great at all, but I’m getting used to it.  Have any of you others tried it? Or a different brand?  You are soooooo right Kathy, this is overwhelming and I’m so thankful to you for posting on this site. Kudos to Kathy! I really have no one to talk to that could possibility understand like people on this site.  Mary Kate, what app do you use for communicating?  I’m still on paper and pen, sooooooo frustrating!

    I wish we could all get together in each others living room or my patio and share our challenges and give and get ideas from each other!  I need you.  It’s tough going through this, however here are some thoughts that keep me going—>

    — “I eat to live , not live to eat”  (Socrates? or Ben Franklin?)

    — I am more than my voice!!!

    — This is bad, but thank God I didn’t have COVID and die,… I’m alive!!!!

    Stay in touch,  Jan