mattb
Member
- Joined
- Sep 7, 2013
- Messages
- 14
- Reason
- Loved one DX
- Diagnosis
- 09/2013
- Country
- US
- State
- NC
- City
- Charlotte
It has been a while since I have posted so I wanted to relay a chain of events that may help others in a similar situation or heading toward a similar situation.
My father was diagnosed with ALS in September 2013 at 71 years old. His symptom onset was a year prior with overall weakness, weightloss and drop foot. It wasn't until he was hospitalized for shortness of breath that we went through two weeks of neurological tests in a university hospital and received the diagnosis of ALS. He was discharged with a BiPAP prescription and a referral to the local ALS clinic. Dad got a G-Tube in October and by the end of December he was 95% dependent on his BiPAP machine. He could still walk, had full use of his arms and hands but was forced to make a decision to get a trach and go on full time invasive ventilation or go into hospice care and be sedated while he suffocated to death. We went to the best voice and swallowing ENT in the state and he recommended the Blom trach tube which would reduce the risk of VAP and give him speaking capability through an interchangeable speaking cannula. He said the surgery would be routine and he would be out of the hospital within a week.:roll
After surgery my dad got pneumonia and seemed to take a few steps backward in muscle weakness when coming out of anesthesia. He ended up in the ICU for a month (which is the only place in most hospitals equipped to care for vent patients), then he was discharged, and ended up back in the ER the same day for two more weeks in the ICU before he was discharged to an LTAC for three more weeks to learn how to handle his ventilator, trach and cough assist. Since then my dad has gone a year and two months with no respiratory issues. His trilogy 100 coupled with Phillips cough assist machine and Blom subglottic suction trach have given my dad another 14 months of life to prepare for his end of life as watched his voluntary motor skills deteriorate.
Today my father is 95% paralyzed, incontinent and communicates through a roller ball mouse on an on-screen keyboard. He still has some use of his fingers, but is losing that too. His care has become a great burden on us and him. He has decided to go into Hospice House next weekend after his wife and daughter visit. At that time he will be sedated and terminally weaned from his ventilator. We were never sure when this day would come but we knew it was in our future and my dad still does not want to die, but he does not want to be a burden or become locked-in. So here we are.
Was it worth it, I am not sure, I hope he feels that it was. A few things that were very useful along the way (which we should have gotten sooner) were obviously his powerchair with lift feature, Rhoho seat and back cushion, wheelchair mini van, ceiling lift over bed, Aquatec reclining shower commode, care.com aids, quiet portable battery operated suction machine, iPad and Tobii. Not to mention the wonderful neurologist and staff at Carolinas Neuromuscular ALS clinic. My dad moved from Louisiana (where he lived with my sister) to North Carolina to live with me 10 months ago. The difference between the Louisiana and NC ALS clinic was dramatic. If you have ALS and you are not getting care or attention find a new clinic or doctor. Also of note: he took 3,4 DAP on a compassionate use drug trial because he has the LEMS antibody. It was of no benefit and possibly speed up his ALS progression. He gets botox injections in his saliva glands every 3 months which were very helpful with secretion management. My dad also took Riluzole and Neudexta along with an antidepressant. Neudexta works with emotion control, but I am not sure it is worth the price if insurance isn't covering it. Riluzole is of minimal value and high cost. Toward the end the neurologist prescribed Provigil for increased wakefulness or less tiredness. This was a wonderful drug that did give dad less tiredness. We only took it as needed, but I wish he would have had it all along.
This disease has been a sad, slow surrender, not much of a fight. We are thankful for the time we had and the things we learned. If I can help anyone by relaying our experience I would be happy to help. I work for a medical technology company and studied relentlessly to give my dad the best possible end of life journey.
Best wishes to anyone traveling on this slow surrender journey. Our hope is built on nothing less than Jesus' blood and righteousness;
My father was diagnosed with ALS in September 2013 at 71 years old. His symptom onset was a year prior with overall weakness, weightloss and drop foot. It wasn't until he was hospitalized for shortness of breath that we went through two weeks of neurological tests in a university hospital and received the diagnosis of ALS. He was discharged with a BiPAP prescription and a referral to the local ALS clinic. Dad got a G-Tube in October and by the end of December he was 95% dependent on his BiPAP machine. He could still walk, had full use of his arms and hands but was forced to make a decision to get a trach and go on full time invasive ventilation or go into hospice care and be sedated while he suffocated to death. We went to the best voice and swallowing ENT in the state and he recommended the Blom trach tube which would reduce the risk of VAP and give him speaking capability through an interchangeable speaking cannula. He said the surgery would be routine and he would be out of the hospital within a week.:roll
After surgery my dad got pneumonia and seemed to take a few steps backward in muscle weakness when coming out of anesthesia. He ended up in the ICU for a month (which is the only place in most hospitals equipped to care for vent patients), then he was discharged, and ended up back in the ER the same day for two more weeks in the ICU before he was discharged to an LTAC for three more weeks to learn how to handle his ventilator, trach and cough assist. Since then my dad has gone a year and two months with no respiratory issues. His trilogy 100 coupled with Phillips cough assist machine and Blom subglottic suction trach have given my dad another 14 months of life to prepare for his end of life as watched his voluntary motor skills deteriorate.
Today my father is 95% paralyzed, incontinent and communicates through a roller ball mouse on an on-screen keyboard. He still has some use of his fingers, but is losing that too. His care has become a great burden on us and him. He has decided to go into Hospice House next weekend after his wife and daughter visit. At that time he will be sedated and terminally weaned from his ventilator. We were never sure when this day would come but we knew it was in our future and my dad still does not want to die, but he does not want to be a burden or become locked-in. So here we are.
Was it worth it, I am not sure, I hope he feels that it was. A few things that were very useful along the way (which we should have gotten sooner) were obviously his powerchair with lift feature, Rhoho seat and back cushion, wheelchair mini van, ceiling lift over bed, Aquatec reclining shower commode, care.com aids, quiet portable battery operated suction machine, iPad and Tobii. Not to mention the wonderful neurologist and staff at Carolinas Neuromuscular ALS clinic. My dad moved from Louisiana (where he lived with my sister) to North Carolina to live with me 10 months ago. The difference between the Louisiana and NC ALS clinic was dramatic. If you have ALS and you are not getting care or attention find a new clinic or doctor. Also of note: he took 3,4 DAP on a compassionate use drug trial because he has the LEMS antibody. It was of no benefit and possibly speed up his ALS progression. He gets botox injections in his saliva glands every 3 months which were very helpful with secretion management. My dad also took Riluzole and Neudexta along with an antidepressant. Neudexta works with emotion control, but I am not sure it is worth the price if insurance isn't covering it. Riluzole is of minimal value and high cost. Toward the end the neurologist prescribed Provigil for increased wakefulness or less tiredness. This was a wonderful drug that did give dad less tiredness. We only took it as needed, but I wish he would have had it all along.
This disease has been a sad, slow surrender, not much of a fight. We are thankful for the time we had and the things we learned. If I can help anyone by relaying our experience I would be happy to help. I work for a medical technology company and studied relentlessly to give my dad the best possible end of life journey.
Best wishes to anyone traveling on this slow surrender journey. Our hope is built on nothing less than Jesus' blood and righteousness;