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John's Town
MDA Chat

Teusday, October 30, 2001

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julie-s -- This evening our guest speaker is actually normally my co-host for this monthly chat, David Jayne. David has ALS and is here this evening to share his personal experiences of what his life has been like since he made the choice to use a ventilator three and a half years ago.

julie-s -- David can you tell us a little about what your experience with ALS has been. What were your first symptoms and how did the disease progress with you?

david-j -- 14 years ago I noticed a persistant muscle twitch in my left arm and I began dropping things. It has been so long since I went through the declining stages, I don't remember much but it was difficult. The feeding tube and vent definitely improved the quality of my life. I have been blessed with fairly slow progression.

julie-s -- What were your first signs that you were having problems with breathing?

david-j -- I began waking up, gasping for breath and feeling light headed.

julie-s -- Did you use a noninvasive form of ventilation like the Bipap prior to the vent? How effective was that and how long did you use it?

david-j -- I went through sleep studies and started using a bipap machine. My bigger problem was maintaining an airway. As my neck muscles weakened I would increase the pressures on the bipap. After about two years I surpassed the effectiveness of the machine, because of my progression. I only used the bipap when sleeping.

julie-s -- At what point did you realize that you needed the vent if you wanted to continue to live?

david-j -- I began experiencing the same gasping and light headedness as I did before using the bipap. Also my blood gases had declined and I was feeling AWFUL.

julie-s -- Only a small percentage of PALS make the choice to use mechanical ventilation. This is something that you must have given a lot of thought to. What factors did you consider when making this decision?

david-j -- Once diagnosed, I decided this disease would not take my life and I would take measures to prevent it from doing so. I've never been one that is influenced by what others do or don't do. I respect their decision not to vent, but I love life and have two precious children that need a father.

julie-s -- Can you explain to us what the procedure is like to get a tracheostomy and ventilator? Are you given general anesthesia? How long does it take? Are you hospitalized for a long time afterwards?

david-j -- It is a simple procedure. Yes, general and a fair amount of pain for a few days. I remained in the hospital a couple to train caregivers in suctioning.

julie-s -- How did you feel and what was life like the first few weeks after going on the vent?

david-j -- I felt like a million dollars immediately after surgery. It was pretty overwhelming going home, but quickly improved. I required suctioning often, but that reduced with time.

julie-s -- How do you feel now? What effect has the ventilator had on the quality of your life?

kenny -- couple of weeks you stayed in the hospital?

david-j -- I feel wonderful compared to the days before venting. I am nearing four years on the vent, without it I would not be here. I would say that's a measured improvement ;- ) only a few days

julie-s -- I THINK he meant a couple of days....correct me if I'm wrong David

julie-s -- How is caring for someone on a vent different? What kind of special training does the caregiver need?

david-j -- I was already paralyzed and needed full time care. Going on the vent did add a few extra needs to my care. A caregiver needs to be trained to suction and clean around the trach, but most importantly relax and be comfortable.

julie-s -- What equipment and resources do you need at home to live on a vent?

david-j -- Of course the vent, a suction machine and a battery back up. I also have a gas powered generator for extended power outtages.

julie-s -- Are you able to get out of bed, shower, and leave the house? How big is the ventilator and is it portable?

david-j -- Most definitely! As Morrie said in Tuesdays with Morrie, ''bed is dead''. The vent I have is roughly a foot square. yes portable

julie-s -- What equipment do you need to bring with you when you leave the house?

david-j -- I take suctioning supplies and a battery powered suction machine.

julie-s -- Is it expensive to live at home on a ventilator? What are the major costs?

david-j -- I couldn't say, because Medicare covers the expenses. I have heard outrages figures of $250,000 a year, but I truly don't see how if you have the support of family and friends.

julie-s -- Does Medicare pay for your equipment and a respiratory therapist?

david-j -- Yes, Medicare

julie-s -- How often are you seen at home by the respiratory therapist? What does he do for you?

david-j -- I am seen monthly. He delivers supplies, checks the equipment and examines me.

julie-s -- Do you also need regular visits at home from a registered nurse? If so, what does she see you for and how often?

david-j -- Yes, she also visits monthly. She changes my trach and feeding tube. Neither of the procedures are painful.

julie-s -- What does suctioning feel like? Is it painful? How often does it need to be done?

david-j -- Suctioning makes me cough, but I don't experience pain. It varies day to day. Some days I go hours without suctioning and others a time or two an hour.

julie-s -- Does suctioning have to be done by a nurse or can anyone do it?

david-j -- Anyone that is willing to learn. I have several friends that know how.

julie-s -- Do you need to have a caregiver with you at all times?

david-j -- That depends on your level of disability. For me, yes.

julie-s -- Does Medicare pay for 24 hour care at home for someone on a vent?

david-j -- No. Because I qualify for skilled home care to change my trach and feeding tube, I do receive daily help with showering.

julie-s -- If a PALS lives at home alone and has no family to provide ongoing care for him, what options are available to him for care should he decide to go on a vent? Is a nursing home the only option? Are all nursing homes equipped to care for someone on a vent?

david-j -- Call me a fool, but I feel anything is possible if you want it bad enough. My exwife did not want me on the vent. When she walked out, I hired a live in caregiver and formed a Share the Care group. So no, a nursing home is not the only option. And no, very few nursing homes accept vent patients.

julie-s -- If a PALS is still able to talk and swallow prior to going on a vent, can he or she expect to continue to be able to do so after the vent?
alive -- who pays for your 24hr caregiver?

julie-s -- David pays for her privately Brad

david-j -- Yes talk and yes eat until the disease progresses. I pay four hundred a week for my live in

alive -- thnx

julie-s -- The ventilator takes over the job of weak breathing muscles that can no longer work efficiently because of ALS. Will ALS continue to progress making other parts of the body weaker even when you are on a vent? Has your own disease progressed since going on the vent?

david-j -- Yes, ALS will still progress. Yes, I have still progressed, but I feel it has been at a slower pace since I am in better health on the vent.

julie-s -- Why do you think the majority of PALS do not choose the ventilator?

kenny -- david do you have to be suctioned during sleeping hours?

david-j -- I would imagine speed of progression, support and not finding quality of life in their condition. most nights I don't now

julie-s -- Are you happy you made the choice you did?

david-j -- I cannot lie, the vent does not make the problems of ALS magically disappear. Life is still difficult living with a severe disability, but I do not regret my decision. I have had many wonderful experiences and hope to be around for the cure.

julie-s -- Do you think that the ventilator is the appropriate choice for every PALS?

david-j -- I feel going on a vent is a very personal decision, obviously as seen in the numbers it isn't the decision of choice.

julie-s -- What would you say to the PALS here tonight who are considering whether or not to use a ventilator or not in the future? What things should they be considering?

david-j -- I am pleased with my venting. Yes, life is still very difficult at times, but worth it. As I said it is a very personal decision. I don't feel comfortable being a cheerleader for venting. I would be happy answering any questions privately by email at djayne23@aol.com

julie-s -- Thanks, David. That concludes the formal part of our discussion here tonight. Please feel free to ask questions and discuss this topic more. We have the room for about 15 more minutes.

dx86ventedn93wv -- hello Mr. J, you and I have communicated briefly via email. I was diagnosed in 86 and became vent dependent March of 93. I was wondering how you communicate, type, etc

david-j -- E Z Keys and a switch under

julie-s -- dx86...how do you type?

dx86ventedn93wv -- do you use the red rubber suction catheters? I find them superior to the clear "coat hanger"type

david-j -- yes I agree

dx86ventedn93wv -- E Z Keys with a home made single switch

david-j -- Good night everyone, thanks for attending

julie-s -- Yes thank you....our next chat will be on November 27 and we will have a repiratory therapist as our guest speaker who works at an ALS clinic in Ohio...so mark your calendars!