My wife was diagnosed with PD 14 years ago, and now has issues with shortness of breath, and a very soft voice, so I'm wondering if I should be making oxygen available, or anything else, in our house. Doc said no, I think maybe yes.
I had the same issues with my mom. I was fortunate enough to learn hospice care is available for long term care in most cases of PD when the patient is progressing quickly or has limited mobility for self care.
The first thing they did was set up our home with oxygen, reacue medications and assistive devices to ease my work load of caring for her. A nurse comes twice a week to evaluate her and a bath aid comes twice a week to help with bathing. They even pick up her medicine for me and provide bed pads, and disposable undergarmemts.
Patients do not half to be at the end of their lives to get help from hospice they just have to have an increased need for completing daily tasks.
I am not a medical professional. You should ask another doctor if you weren't happy with that doctor's answer. And before taking your wife to any facility, you are supposed to call ahead and describe her symptoms.
Oxygen is a prescribed medication. Without labs and monitoring, you can not know what a safe and effective does will be for your loved one.
As an RN: I advise getting a pulse oximeter to start assessing her oxygenation - while she is free of COVID-19. If she does develop COVID-19 infection, she will develop a fever, shortness of breath AND her pulse oximetry readings will go down dramatically. If that happens, notify your doctor, health clinic, or emergency room to arrange for your wife to be tested, evaluated, and treated. You will have to stay in quarantine for at least 2 weeks while your wife is treated.
Nelson, thanks for taking the time to respond to our posts. As to the rigamarole of getting oxygen through a doctor, that's required for Medicare to pay for the oxygen, and supplies, which can be costly.
You can purchase your own oxygen; however, even the smaller portable units aren't cheap. Inogen is a common supplier. I can't remember the name of the company that made the tanks we got but will probably think of it as soon as I log out.
In the meantime, check out these google hits for various types of oxygen tanks and equipment.
This will help you price them to determine if you want to buy your own equipment.
What you might consider alternately though, and first, is to just order a pulse oximeter, which can measure the saturation rate through a finger. They look like this:
Any but the one second from the left end are types that I've seen. I've also seen them in catalogues. You could probably call local DME suppliers and find out if they have them, and could send one if you bought it. That would avoid having to make a trip.
The DME supplier arrangement is one of those interesting Medicare arrangements. If you want Medicare to pay for the equipment for use w/o having to purchase, the steps are specifically defined and you have to jump through the hoops. It does save money immediately, especially if you have Medigap insurance.
All the supplies are provided as well, and service in my experience has been top notch as we had some problems with the concentrator and my father, who eventually needed it 24/7, wasn't able to get the air he needed. I was able to conference call with Dad on the line around 10 p.m. in the evening and have a rep talk Dad through what to do to get the oxygen flowing again.
At what elevation do you live? If you're quite high, that might be a factor in Pam's difficult in breathing. Another option is to find some kind of filter for the coal stove; that could a major contributor to breathing difficulty in and of itself.
Your history of how you and Pam met and decided to share a life together is very poignant, moving and inspirational. I wouldn't be concerned about marriage; it's your individual choice, and I feel that people should choose arrangements that suit them, not what's typical for societal purposes.
Your posts are not only helpful but thoughtful. We need people like you on this forum. I truly appreciate your participation in this forum. I thank you for reaching out to this poster, others and certainly for myself 💗. I have always appreciated the advice that you have given to me.
Dear NeedHelpWIthMom, thanks for those very kind words. We are indeed, soulmates, and have known that from the very day we met. It wasn't a fireworks kind of raging love that we've all experienced as younger people tho. We were both of middle age, but it was simply a great sense of peace, when we were in each other's company. We both spoke in similar fashions, created sentences in similar ways, thought, at similar speeds, to the point where we felt that we were almost able to read each other's minds. We spent two days pretty much always together and realized that what we had just found, was by far the very best experience we had ever had with the opposite sex, it was just easy, it was that suddenly we were not alone anymore, and knew that for at least as long as we were both alive, we would never be alone again. So we just moved in together. Sorry if that offends any religious folk out there, but we knew that we needed each other, immediately, and saw no need to wait until we got married. Being together was by far, of the greatest importance. Since then, for us, there just wasn't any kind of "small stuff" to be upset over, it's been that way throughout our 20 years or so together, and we've just never found anything that we needed to fight about, both of us knowing that fighting only leaves one or the other person feeling hurt, which has always been our greatest concern for each other, that we don't get hurt by anything or anybody, much less each other. Why do damage to the most important things in our lives? So there are people who don't believe us, but it's true, we've never had an argument. If we disagree, then we simply talk it through, calmly, peacefully, until we have, the correct answer. There always is one, and of course in the end, one has to admit that we were wrong, at which point there is no need to argue, only a need to solve the problem, to find the answer, and then to move along with our lives. Pam is a bit smarter than I am, so mostly, hehe, it's me who needs to admit I was wrong, but I have no problem with that, at all. To me, life is about learning, and growing, from anyone who can teach me something, so there's no shame in being wrong, unless we insist that we aren't, which only causes the same problem to recur, at another time. Why do that? I just never did get that, but our love for each other only gets greater every day, because it's all about improving our lives, such as they are, and not some kind of one upmanship. I have my own areas of knowledge and skills, and she has hers, and so as a unit, we only improve ourselves, and each other, and the bond we have between us.
Yes. They call it "early onset", and it is more aggressive than it is for folks who get it later in life. Pam tried all of the drugs, for years, but they are in effect, poison, so we decided on DBS to fight the PD. And it does work. We were both stunned, absolutely stunned, on the day when the doc turned it on and then fine tuned it, and suddenly, for the first time in many years, her shaking, just, stopped! Pam looked ..confused, and I was shedding tears. It is an amazing thing, but this wound that won't heal is a big problem. If only the doc could close it up forever. PD is indeed easier for those who get it later in life, but nonetheless, I'm so sorry to hear that it has happened to your Mother. I wouldn't wish it on my worst enemy, if I had any enemies. But I'm sure that you're up on all of the latest remedies, and your Mother is very lucky to have you on her side. May you both stay strong, and find a little happiness wherever you can. In the end, that's all that really matters.
Thanks again to all, and to you NeedHelpWithMom, for your kind comment.
I would like to say thank you just for being the kind soul that you are. I can understand and appreciate your circumstances. It is evident that you are soulmates.
Hey, no need to apologize for the two of you moving in together. Not to me, anyway...love is love and honestly I have seen certain committed couples that did not have ‘legal’ marriage certificates. Sometimes they had a more solid relationship than ‘married’ people that I know.
I love my mom. I took care of her as long as I could, two decades, 15 years of those in my home. I wish her the very best. There were complications and she is now with my brother and sister in law.
In short, I burned out. My mom did not accept boundaries. My brothers who did nothing to help criticized me unfairly without even hearing my side. My own health, physically and emotionally started to decline and I surrendered caring for my mom.
This is why I cautioned you not to overextend yourself. Your situation is really hard.
I know the drugs give relief but not a cure. Mom takes Sinamet. Of course, mom getting diagnosed later in life was not a candidate for the surgery that younger people have tried.
I know two people who have tried the brain surgery. One was helped a fairly significant amount. The other one not so much.
They had one of the leading doctors in the Parkinson’s field perform the surgery but as you know, Parkinson’s disease is different in everyone.
I sincerely wish the very best for you and your beautiful soulmate. You are blessed to have found each other.
Take care and please keep us posted as to how you are doing and give us updates on Pam. 💗
Do you happen to know why ? I mean, it's just air, and it's not like we can get high with it or anything.. I'd only like to have it on hand, because one of the causes of death for PD patients is choking. (sigh..) I don't get it.
Nelson, something else I've just thought of: air filters. I bought a good sized Honeywell electronic HEPA air filter for him, then one for myself. It helps keep the air clean.
At one firm where I worked, the firm provided room sized air filters for the staff. I always had one in my office, and it made a difference as office air was so dry.
Spider plants are also good air filters.
There are also steps you can take to reduce dust accumulation; I'm pulling out all my carpeting and exposing the wood floors underneath. For me they're easier to keep clean.
We are of like minds ! We have HEPA filters here too, especially necessary because we have a "modern" coal stove that does create some dust. And we HAte carpets! lol.
I agree with GA, I think you need a prescription for Oxygen from a doctor.
Staying home is probably the best thing. Like said, make sure you wash your hands well after handling anything from the outside. Maybe no visitors. If you do allow visitors, no kissing or hugging. My daughter runs a woundcare unit and was told people in the waiting room should sit 6 ft. apart.
Yes indeed JoAnn. I've spent the past three weeks just reading, all day long, trying to get a handle on this dang thing that is so suddenly is a threat to our lives. I did read yesterday that it has stayed alive on Stainless Steel, in lab conditions, for nine days ! So cleaning is of paramount importance, as well as the things you mentioned. We're isolated up in the mountains here, so little chance of any visitors at all, which is fine by us! The CDC website has a very good page on cleaning for corona, some of which is surprising. I'll try to find it again, and then post it here..
The very best thing you can do now is keep yourselves as isolated as possible. Food delivered and remember to wash hands often when handling things that must be brought into the home. The virus now we know can live on some surfaces, plastic and chrome/steel for 72 hours. The best thing is prevention, not treatment for in case she gets it, for that is almost certainly to be too late. I heard a doctor in Washington saying today that those needing assist with breathing, it is almost always too late, they are not able to get them off ventilators and they are going into renal failure and cardiogenic shock. So prevention is best now. And if you see respiratory distress you are, if your wife is a full code and you both wish heroic measures, left with calling EMS. Bless you for the wonder of your loving care. May you both stay safe.
Thanks to you and everyone else, I'm going to try to reply to all at least briefly. Apologies if I sound "short " with anyone. Fortunately, we live up in the mountains and so we're pretty much isolated to begin with. We're ordering food from our grocery store and all we have to do is pull up, pop the trunk, and then wave thanks to the kids who load it up. Your comment is excellent. Prevention is key now, what with the virus running rampant. Please explain "full code" for me, if you would. Both of us still very much love being alive, and would gladly, lol, seek heroic measures. Thanks for the comment.
Nelson, Medicare has specific requirements for providing oxygen care in the home. I don't recall what they are, and they may have changed, but best recollection is that nighttime SAT rates need to be determined first, and if they're lower than a specific level, in home oxygen could be prescribed.
But see a pulmonologist for tests first, and raise the issue of oxygen. A pulmonary doctor can make determinations from the tests to be administered, then order the night time test.
If your wife's SAT rate is low enough that oxygen is ordered, you'd likely get a concentrator for home use and portables or E tanks for out of home use. If you do get to that point, order as many E tanks as the DME supplier will provide, as you want to plan for back-ups during power outages.
Thanks for the comment GardenArtist. Not sure I could get Pam to jump through all of those hoops.. She, (and I) are fearful to go out in public for anything.. I was hoping that I might be able to just have Oxygen on hand, in case of an emergency situation that I see as inevitable.. We are indeed very much isolated here, I had a couple of heart attacks last year, and it took an hour, the first time, and over three hours the second, for the paramedics to get here. So her greatest hope, in an emergency, is me, and mine is her. So I would.ve hoped that I could just have some O2 on hand.. Oh well. Again, thanks for the comment. It was very useful to me.
I think anything you can do to prepare for whatever is coming, that you should do.
your wife is in a high risk group. Taking great care to prevent bringing the virus into your home, and avoid going out at all. So, oxygen seems like a good item for prep.
ask that deliveries be left at the door. Avoid having to have close contact with a delivery person.
Thanks Katie, We are indeed taking all of those precautions, as we're both in a high risk group. We're pre ordering food, having it loaded, and then, because it's very cool here, just letting everything stay in the trunk for a few days or so. We live in interesting times.
Just read your bio. You’re an amazing husband. If everyone loved their spouse as you do, divorce rates would drop drastically. I realize divorce cannot be helped in certain cases and it is sometimes necessary. There are others who divorce over silly issues that could most likely be resolved.
No one could say that you and your wife have not lived up to your vows. You are quite an inspiration and extremely devoted. Please express all of your concerns to her doctor and if caregiving is overwhelming please seek help, either in the home or future planning for a facility.
Your wife is blessed to have you and she sounds lovely as well. I admire your commitment to each other.
My mom has Parkinson’s disease so I do know what it is like watching this horrendous neurological disorder. Your wife has a truly bad situation being diagnosed earlier in life.
My mom was not diagnosed until later in life so the disease progresses at a slower pace than a younger patient. My mom doesn’t have the same issues as your wife. Parkinson’s disease effects everyone differently. One thing is for sure. It only gets more difficult. There is no cure. Hopefully, one day there will be a cure.
Concerning the answer to your question if your doctor says no and you are not sure get a second opinion from another neurologist. That’s what I would do.
I have breathing issues due to asthma. Oxygen was needed for me while in the hospital with severe asthma attacks. Otherwise, I do have breathing treatments that I do with a machine they sent home with me from the hospital. I also have my inhalers. Two types of inhalers, one for emergencies and one that is used as treatment on a regular basis.
I don’t feel qualified to answer in regard to your wife’s situation. Ask a professional medical doctor for this information. Maybe one of the nurses that chat on the forum will be able to help you.
The first thing they did was set up our home with oxygen, reacue medications and assistive devices to ease my work load of caring for her. A nurse comes twice a week to evaluate her and a bath aid comes twice a week to help with bathing. They even pick up her medicine for me and provide bed pads, and disposable undergarmemts.
Patients do not half to be at the end of their lives to get help from hospice they just have to have an increased need for completing daily tasks.
As an RN:
I advise getting a pulse oximeter to start assessing her oxygenation - while she is free of COVID-19. If she does develop COVID-19 infection, she will develop a fever, shortness of breath AND her pulse oximetry readings will go down dramatically. If that happens, notify your doctor, health clinic, or emergency room to arrange for your wife to be tested, evaluated, and treated. You will have to stay in quarantine for at least 2 weeks while your wife is treated.
You can purchase your own oxygen; however, even the smaller portable units aren't cheap. Inogen is a common supplier. I can't remember the name of the company that made the tanks we got but will probably think of it as soon as I log out.
In the meantime, check out these google hits for various types of oxygen tanks and equipment.
https://www.google.com/search?source=hp&ei=PMBuXv6hLvCP9PwP3uG14A4&q=portable+oxygen+concentrator&oq=portable+oxygen+concentrator&gs_l=psy-ab.3..0l10.869.5862..6023...0.0..0.79.1725.28......0....1..gws-wiz.......0i131.lC0P_lP29M8&ved=0ahUKEwj-r7zm1p3oAhXwB50JHd5wDewQ4dUDCAs&uact=5#spf=1584316484433
This will help you price them to determine if you want to buy your own equipment.
What you might consider alternately though, and first, is to just order a pulse oximeter, which can measure the saturation rate through a finger. They look like this:
https://www.google.com/search?ei=Q8BuXv2VLdbEtQaHu4SwBQ&q=pulse+oximeter&oq=pulse+oximeter&gs_l=psy-ab.3..0i131i273j0i67j0i131l2j0i67j0i131l2j0l3.3180.5312..5435...0.1..0.112.994.12j2......0....1..gws-wiz.......0i71j0i131i67j0i273.gu8sz6kHGy8&ved=0ahUKEwi9w-bp1p3oAhVWYs0KHYcdAVYQ4dUDCAo&uact=5#spf=1584316666764
Any but the one second from the left end are types that I've seen. I've also seen them in catalogues. You could probably call local DME suppliers and find out if they have them, and could send one if you bought it. That would avoid having to make a trip.
The DME supplier arrangement is one of those interesting Medicare arrangements. If you want Medicare to pay for the equipment for use w/o having to purchase, the steps are specifically defined and you have to jump through the hoops. It does save money immediately, especially if you have Medigap insurance.
All the supplies are provided as well, and service in my experience has been top notch as we had some problems with the concentrator and my father, who eventually needed it 24/7, wasn't able to get the air he needed. I was able to conference call with Dad on the line around 10 p.m. in the evening and have a rep talk Dad through what to do to get the oxygen flowing again.
At what elevation do you live? If you're quite high, that might be a factor in Pam's difficult in breathing. Another option is to find some kind of filter for the coal stove; that could a major contributor to breathing difficulty in and of itself.
Your history of how you and Pam met and decided to share a life together is very poignant, moving and inspirational. I wouldn't be concerned about marriage; it's your individual choice, and I feel that people should choose arrangements that suit them, not what's typical for societal purposes.
Your posts are not only helpful but thoughtful. We need people like you on this forum. I truly appreciate your participation in this forum. I thank you for reaching out to this poster, others and certainly for myself 💗. I have always appreciated the advice that you have given to me.
So we just moved in together. Sorry if that offends any religious folk out there, but we knew that we needed each other, immediately, and saw no need to wait until we got married. Being together was by far, of the greatest importance.
Since then, for us, there just wasn't any kind of "small stuff" to be upset over, it's been that way throughout our 20 years or so together, and we've just never found anything that we needed to fight about, both of us knowing that fighting only leaves one or the other person feeling hurt, which has always been our greatest concern for each other, that we don't get hurt by anything or anybody, much less each other. Why do damage to the most important things in our lives?
So there are people who don't believe us, but it's true, we've never had an argument. If we disagree, then we simply talk it through, calmly, peacefully, until we have, the correct answer. There always is one, and of course in the end, one has to admit that we were wrong, at which point there is no need to argue, only a need to solve the problem, to find the answer, and then to move along with our lives. Pam is a bit smarter than I am, so mostly, hehe, it's me who needs to admit I was wrong, but I have no problem with that, at all. To me, life is about learning, and growing, from anyone who can teach me something, so there's no shame in being wrong, unless we insist that we aren't, which only causes the same problem to recur, at another time. Why do that? I just never did get that, but our love for each other only gets greater every day, because it's all about improving our lives, such as they are, and not some kind of one upmanship. I have my own areas of knowledge and skills, and she has hers, and so as a unit, we only improve ourselves, and each other, and the bond we have between us.
Yes. They call it "early onset", and it is more aggressive than it is for folks who get it later in life. Pam tried all of the drugs, for years, but they are in effect, poison, so we decided on DBS to fight the PD. And it does work. We were both stunned, absolutely stunned, on the day when the doc turned it on and then fine tuned it, and suddenly, for the first time in many years, her shaking, just, stopped! Pam looked ..confused, and I was shedding tears. It is an amazing thing, but this wound that won't heal is a big problem. If only the doc could close it up forever.
PD is indeed easier for those who get it later in life, but nonetheless, I'm so sorry to hear that it has happened to your Mother. I wouldn't wish it on my worst enemy, if I had any enemies. But I'm sure that you're up on all of the latest remedies, and your Mother is very lucky to have you on her side. May you both stay strong, and find a little happiness wherever you can. In the end, that's all that really matters.
Thanks again to all, and to you NeedHelpWithMom, for your kind comment.
I would like to say thank you just for being the kind soul that you are. I can understand and appreciate your circumstances. It is evident that you are soulmates.
Hey, no need to apologize for the two of you moving in together. Not to me, anyway...love is love and honestly I have seen certain committed couples that did not have ‘legal’ marriage certificates. Sometimes they had a more solid relationship than ‘married’ people that I know.
I love my mom. I took care of her as long as I could, two decades, 15 years of those in my home. I wish her the very best. There were complications and she is now with my brother and sister in law.
In short, I burned out. My mom did not accept boundaries. My brothers who did nothing to help criticized me unfairly without even hearing my side. My own health, physically and emotionally started to decline and I surrendered caring for my mom.
This is why I cautioned you not to overextend yourself. Your situation is really hard.
I know the drugs give relief but not a cure. Mom takes Sinamet. Of course, mom getting diagnosed later in life was not a candidate for the surgery that younger people have tried.
I know two people who have tried the brain surgery. One was helped a fairly significant amount. The other one not so much.
They had one of the leading doctors in the Parkinson’s field perform the surgery but as you know, Parkinson’s disease is different in everyone.
I sincerely wish the very best for you and your beautiful soulmate. You are blessed to have found each other.
Take care and please keep us posted as to how you are doing and give us updates on Pam. 💗
At one firm where I worked, the firm provided room sized air filters for the staff. I always had one in my office, and it made a difference as office air was so dry.
Spider plants are also good air filters.
There are also steps you can take to reduce dust accumulation; I'm pulling out all my carpeting and exposing the wood floors underneath. For me they're easier to keep clean.
Staying home is probably the best thing. Like said, make sure you wash your hands well after handling anything from the outside. Maybe no visitors. If you do allow visitors, no kissing or hugging. My daughter runs a woundcare unit and was told people in the waiting room should sit 6 ft. apart.
So prevention is best now. And if you see respiratory distress you are, if your wife is a full code and you both wish heroic measures, left with calling EMS.
Bless you for the wonder of your loving care. May you both stay safe.
Fortunately, we live up in the mountains and so we're pretty much isolated to begin with. We're ordering food from our grocery store and all we have to do is pull up, pop the trunk, and then wave thanks to the kids who load it up.
Your comment is excellent. Prevention is key now, what with the virus running rampant. Please explain "full code" for me, if you would. Both of us still very much love being alive, and would gladly, lol, seek heroic measures. Thanks for the comment.
But see a pulmonologist for tests first, and raise the issue of oxygen. A pulmonary doctor can make determinations from the tests to be administered, then order the night time test.
If your wife's SAT rate is low enough that oxygen is ordered, you'd likely get a concentrator for home use and portables or E tanks for out of home use. If you do get to that point, order as many E tanks as the DME supplier will provide, as you want to plan for back-ups during power outages.
your wife is in a high risk group. Taking great care to prevent bringing the virus into your home, and avoid going out at all. So, oxygen seems like a good item for prep.
ask that deliveries be left at the door. Avoid having to have close contact with a delivery person.
Just read your bio. You’re an amazing husband. If everyone loved their spouse as you do, divorce rates would drop drastically. I realize divorce cannot be helped in certain cases and it is sometimes necessary. There are others who divorce over silly issues that could most likely be resolved.
No one could say that you and your wife have not lived up to your vows. You are quite an inspiration and extremely devoted. Please express all of your concerns to her doctor and if caregiving is overwhelming please seek help, either in the home or future planning for a facility.
Your wife is blessed to have you and she sounds lovely as well. I admire your commitment to each other.
My mom has Parkinson’s disease so I do know what it is like watching this horrendous neurological disorder. Your wife has a truly bad situation being diagnosed earlier in life.
My mom was not diagnosed until later in life so the disease progresses at a slower pace than a younger patient. My mom doesn’t have the same issues as your wife. Parkinson’s disease effects everyone differently. One thing is for sure. It only gets more difficult. There is no cure. Hopefully, one day there will be a cure.
Concerning the answer to your question if your doctor says no and you are not sure get a second opinion from another neurologist. That’s what I would do.
I have breathing issues due to asthma. Oxygen was needed for me while in the hospital with severe asthma attacks. Otherwise, I do have breathing treatments that I do with a machine they sent home with me from the hospital. I also have my inhalers. Two types of inhalers, one for emergencies and one that is used as treatment on a regular basis.
I don’t feel qualified to answer in regard to your wife’s situation. Ask a professional medical doctor for this information. Maybe one of the nurses that chat on the forum will be able to help you.
Best wishes to you and your wife. Take care.