Caregivers only... You and your PALS
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thanks for this thread
my husband has never been angry or given into outbursts. he gets 'bossy' sometimes telling me what to do, when, and making a face if i do it wrong, but he has never yelled at me. he has said several times that if als is how the lord wants to take him home, then he accepts it.
he says he does not want to 'leave me' as we have not been married even 7 years yet, and he knows i will be alone. he asked me last night to promise him that i would not sit in this house and grieve a long time, but try and go back to our church as soon as possible, and get out and do volunteer work, eat lunch with friends, etc. i told him sure i would, but i still had to grieve awhile and i'd get out and try and live when i could bear it.
i, too, get exhausted and so tired and weary, and then i look over at him struggling to breathe, and try not to voice it.
we were told in May he only had a few months to live. he can still walk on a walker to the bathroom, but he can barely use his hands now, and he is wasting away and it breaks my heart.
i do understand what everyone is going through. i heard from my friend poco recently that her husband dick died a couple of months ago, and then i heard from my friend paty in CA that her husband jorge was in the hosp. with pneumonia.
does anyone know about paty's husband? would love an update.
thanks again for this thread.
jackiemax
my husband has never been angry or given into outbursts. he gets 'bossy' sometimes telling me what to do, when, and making a face if i do it wrong, but he has never yelled at me. he has said several times that if als is how the lord wants to take him home, then he accepts it.
he says he does not want to 'leave me' as we have not been married even 7 years yet, and he knows i will be alone. he asked me last night to promise him that i would not sit in this house and grieve a long time, but try and go back to our church as soon as possible, and get out and do volunteer work, eat lunch with friends, etc. i told him sure i would, but i still had to grieve awhile and i'd get out and try and live when i could bear it.
i, too, get exhausted and so tired and weary, and then i look over at him struggling to breathe, and try not to voice it.
we were told in May he only had a few months to live. he can still walk on a walker to the bathroom, but he can barely use his hands now, and he is wasting away and it breaks my heart.
i do understand what everyone is going through. i heard from my friend poco recently that her husband dick died a couple of months ago, and then i heard from my friend paty in CA that her husband jorge was in the hosp. with pneumonia.
does anyone know about paty's husband? would love an update.
thanks again for this thread.
jackiemax
Lorie
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Jackie
Jackie, Stay positive. I don't think the doctor's can give an actual length of time for your husband to live. My brother and a PALS of mine have beat the odds so far.
Cherish each and every moment you have with him. Tim does get angry on a regurlar basis. I told him tonight that we have symptoms to. We don't like seing him go through this disease. He told me he was not rady to die and he was not giving up. I told him I am not either. I am going to make a differerence in ALS.
As soon as I can, I will update you all on what I am in the process of doing. I wan't to help the PALS "LIVING" WITH ALS".
MY HAT OFF TO YOUR HUSBAND FOR SUCH A GREAT ATTITUDE, AND TO YOU FOR STICKING BY HIM.
Lorie :-D
Jackie, Stay positive. I don't think the doctor's can give an actual length of time for your husband to live. My brother and a PALS of mine have beat the odds so far.
Cherish each and every moment you have with him. Tim does get angry on a regurlar basis. I told him tonight that we have symptoms to. We don't like seing him go through this disease. He told me he was not rady to die and he was not giving up. I told him I am not either. I am going to make a differerence in ALS.
As soon as I can, I will update you all on what I am in the process of doing. I wan't to help the PALS "LIVING" WITH ALS".
MY HAT OFF TO YOUR HUSBAND FOR SUCH A GREAT ATTITUDE, AND TO YOU FOR STICKING BY HIM.
Lorie :-D
l2c
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My husband also is so patient and grateful for the help he receives but he is very discourged. He told me yesterday that he donen't think he has long to live.
Last night I took him to ER because he was coughing so very much all day I was afraid he was getting pnemonia. No pnemonia but perhaps a mucus plug which of course with a weakened cough he can't budge. Am waiting now to see his primary doctor to ge referred to a pulminologist.
He get so bored.....but there is just so much I can do to distract him.....
Last night I took him to ER because he was coughing so very much all day I was afraid he was getting pnemonia. No pnemonia but perhaps a mucus plug which of course with a weakened cough he can't budge. Am waiting now to see his primary doctor to ge referred to a pulminologist.
He get so bored.....but there is just so much I can do to distract him.....
l2c,
Sorry your husband is discouraged and now having complications. Please let us know how he is doing. I hope he can get to the pulmonolgist soon. My husband also coughs a lot. sharing your information here about your situation is helping me learn about all the different aspects of this disease.
Thanks to all!
Sorry your husband is discouraged and now having complications. Please let us know how he is doing. I hope he can get to the pulmonolgist soon. My husband also coughs a lot. sharing your information here about your situation is helping me learn about all the different aspects of this disease.
Thanks to all!
Problem With Coughing
This Is In Reply To The Coughing Situation, And Going To The Er. Sunday Night My Husband Tried To Cough Up Something He 'felt' In His Throat, And Coughed So Hard (bec. His Lungs Are Weak, Very Hard To Cough), And All Of A Sudden, He Quit Breathing And Almost Passed Out.
I Called 911 And They Did Chest X-rays And His Lung Were Clear Also. We Broght Him Home That Night. I Am The Sole Caregiver Here, And Now He Has Put His Bi-pap Machine On A Rolling Cart, And With Extra Long Tubing, We Can Unconnect The Bi-pap And Connect The Oxygen In One Spot, Half-way Between Our Bedroom And Den. That Way, When He Needs His Bi-pap In The Den Watching Tv, I Can Just Disconnect The Tubing From Oxygen To Bi-pap, And Vice Versa.
I Think, One Of The Moderators Here, Al, Also Has His Bi-pap On A Rolling Cart.
I Just Got A Note From Terri Explaining The Loss Of Her Husband And She Was Not At All Prepared For It, Bec. It Is Hard To Tell When Or How It Will Happen.
Caregivers, I Commend You All. This Has Taken A Toll On Me Believe Me. I Am Going On Very Little Sleep, And Have A Tension Headache Every Day Of The World. But I Love Him, And I Married Him For Better Or Worse, In Sickness And Health. And Believe Me, He Would Do All This For Me.
It Is Tiring To Be A Caregiver, And Heartbreaking To See Your Loved Ones Lose Their Health, Dignity, And Heart.
Jackiemax
This Is In Reply To The Coughing Situation, And Going To The Er. Sunday Night My Husband Tried To Cough Up Something He 'felt' In His Throat, And Coughed So Hard (bec. His Lungs Are Weak, Very Hard To Cough), And All Of A Sudden, He Quit Breathing And Almost Passed Out.
I Called 911 And They Did Chest X-rays And His Lung Were Clear Also. We Broght Him Home That Night. I Am The Sole Caregiver Here, And Now He Has Put His Bi-pap Machine On A Rolling Cart, And With Extra Long Tubing, We Can Unconnect The Bi-pap And Connect The Oxygen In One Spot, Half-way Between Our Bedroom And Den. That Way, When He Needs His Bi-pap In The Den Watching Tv, I Can Just Disconnect The Tubing From Oxygen To Bi-pap, And Vice Versa.
I Think, One Of The Moderators Here, Al, Also Has His Bi-pap On A Rolling Cart.
I Just Got A Note From Terri Explaining The Loss Of Her Husband And She Was Not At All Prepared For It, Bec. It Is Hard To Tell When Or How It Will Happen.
Caregivers, I Commend You All. This Has Taken A Toll On Me Believe Me. I Am Going On Very Little Sleep, And Have A Tension Headache Every Day Of The World. But I Love Him, And I Married Him For Better Or Worse, In Sickness And Health. And Believe Me, He Would Do All This For Me.
It Is Tiring To Be A Caregiver, And Heartbreaking To See Your Loved Ones Lose Their Health, Dignity, And Heart.
Jackiemax
MtPockets
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I have been diagnosed with cough syncope. Passing out when I cough hard.
The doctors explained to me that when I coughed hard the muscles in my neck would restrict the blood flow to my brain and I would pass out. I have had this for about 12 years. It took several visits to the doctor and days in the hospital before they gave me the Dx.
It seemed every time the doctor was i the room it would not happen. Then one day he had me stand by the side of the bed checking my lungs when I coughed and blacked out completely and fell onto the bed. I was aware of what was going on in the room, but could not move, breath, or do anything until the normal blood flow returned to my brain. The Doctor did the sternum rub to try to see if I was faking and was about to panic when I came back to where I could speak. I told him, there, that is what I am talking about.
The only time this has been a problem is if I am driving and pass out. My wife has learned to grab the steering wheel until I recover. That was back when I drove a lot. I have been having congestion in my lungs for about 2 weeks now and I have been coughing a lot and passing out again. It seems like I do not have enough volume of air in my lungs to get whatever is in there out.
Maybe this is what your husband has been experiencing. Most doctors are not aware of this effect unless you mention it to them. They usually blame passing out on blood pressure or something else, and it could be something else. Just a thought for you to consider.
God Bless
Capt AL
P. S. If you have the time read my blog about my sick grandson who will be having surgery on the 12th of October.
The doctors explained to me that when I coughed hard the muscles in my neck would restrict the blood flow to my brain and I would pass out. I have had this for about 12 years. It took several visits to the doctor and days in the hospital before they gave me the Dx.
It seemed every time the doctor was i the room it would not happen. Then one day he had me stand by the side of the bed checking my lungs when I coughed and blacked out completely and fell onto the bed. I was aware of what was going on in the room, but could not move, breath, or do anything until the normal blood flow returned to my brain. The Doctor did the sternum rub to try to see if I was faking and was about to panic when I came back to where I could speak. I told him, there, that is what I am talking about.
The only time this has been a problem is if I am driving and pass out. My wife has learned to grab the steering wheel until I recover. That was back when I drove a lot. I have been having congestion in my lungs for about 2 weeks now and I have been coughing a lot and passing out again. It seems like I do not have enough volume of air in my lungs to get whatever is in there out.
Maybe this is what your husband has been experiencing. Most doctors are not aware of this effect unless you mention it to them. They usually blame passing out on blood pressure or something else, and it could be something else. Just a thought for you to consider.
God Bless
Capt AL
P. S. If you have the time read my blog about my sick grandson who will be having surgery on the 12th of October.
Lorie
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Jackie-Please Read
Last week I got Tim this COUGH ASSIST MACHINE. It works great. His Medicare and Medicaid paid for it. Great Machine. I stay one step ahead of what Tim needs. This is working great for him. He is not congested as much anymore. No choking coughs's anymore. I hope this is helpful.
Here is the Link:
http://www.coughassist.com/
Lorie:-D
Last week I got Tim this COUGH ASSIST MACHINE. It works great. His Medicare and Medicaid paid for it. Great Machine. I stay one step ahead of what Tim needs. This is working great for him. He is not congested as much anymore. No choking coughs's anymore. I hope this is helpful.
Here is the Link:
http://www.coughassist.com/
Lorie:-D
cough assist machine
thank you for your note about the cough assist machine. horace's home health aide is here right now assisting his bath, so i will tell her about this. she told me to call the company we use for medical equipment and ask if they have one or can get us one, and then they can call his primary care dr. and get an order for this.
we have had to take him to the er three times now just for this. coughing till he could not breathe, so i thank you for this information.
i went to his dr. yesterday as he is now my pc dr. also, and he is now treating me for high blood pressure and nerve ending pain in my legs. my blood pressure used to be 110 / 60 but is now 153/80 or 90. he said it had to be taken care of and this high blood pressure was causing the tension headaches i've been having ea. day, plus he said no sleep at night was sure not helping matters. so he prescribed a pill for nerve ending pain in my legs(HE HAD AT FIRST THO'T IT WAS RESTLESS LEG SYNDROME) but found that was not it, and so i took that first pill for nerve ending pain last night and fell asleep the minute my head hit the pillow and did not wake up till 6:45 am.
this meant that my husband had to fend for himself by turning over several times and getting the cover tangled under him, and covering himself back up. i've always been awake when he turned over, and i've held the covers up for him and then recovered him. i must have been exhausted.
this morn. i did not even get to eat my cereal till 10 am bec. i was taking care of him and his needs, and two dogs' needs, so caregivers, i know what you all go through. i love this thread. thanks for allowing me to vent. jackie
thank you for your note about the cough assist machine. horace's home health aide is here right now assisting his bath, so i will tell her about this. she told me to call the company we use for medical equipment and ask if they have one or can get us one, and then they can call his primary care dr. and get an order for this.
we have had to take him to the er three times now just for this. coughing till he could not breathe, so i thank you for this information.
i went to his dr. yesterday as he is now my pc dr. also, and he is now treating me for high blood pressure and nerve ending pain in my legs. my blood pressure used to be 110 / 60 but is now 153/80 or 90. he said it had to be taken care of and this high blood pressure was causing the tension headaches i've been having ea. day, plus he said no sleep at night was sure not helping matters. so he prescribed a pill for nerve ending pain in my legs(HE HAD AT FIRST THO'T IT WAS RESTLESS LEG SYNDROME) but found that was not it, and so i took that first pill for nerve ending pain last night and fell asleep the minute my head hit the pillow and did not wake up till 6:45 am.
this meant that my husband had to fend for himself by turning over several times and getting the cover tangled under him, and covering himself back up. i've always been awake when he turned over, and i've held the covers up for him and then recovered him. i must have been exhausted.
this morn. i did not even get to eat my cereal till 10 am bec. i was taking care of him and his needs, and two dogs' needs, so caregivers, i know what you all go through. i love this thread. thanks for allowing me to vent. jackie
MtPockets
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Jackie,
Can you tell me what this nerve ending pain pill is you are using?
I just left the doctors office not 10 minutes ago and he said he thought my leg pain at night was being helped along by restless leg syndrone and gave me some "Requip", which is ropinirole HCL to try to see if it helps.
I have been using Klonophin in the past for the RLS, but it seems to no longer work.
I do not understand how I can have restless leg syndrone when the muscles in
my legs do not function?
But I guess I'll give this med a try and see if it helps with the leg pain at night.
God Bless
Capt AL
Can you tell me what this nerve ending pain pill is you are using?
I just left the doctors office not 10 minutes ago and he said he thought my leg pain at night was being helped along by restless leg syndrone and gave me some "Requip", which is ropinirole HCL to try to see if it helps.
I have been using Klonophin in the past for the RLS, but it seems to no longer work.
I do not understand how I can have restless leg syndrone when the muscles in
my legs do not function?
But I guess I'll give this med a try and see if it helps with the leg pain at night.
God Bless
Capt AL
l2c
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Gee, guys, I am so glad I found this site. It is hard to talk to anyone much because you want to be positive and not always complaining. We are going to look into the cough asist machine. As far as usuing th bi-pap machine, I was so pleased that Don was able to use it so well so quickly. All they had to say was that it will prolong life and he went for it (he has a very strong will) however, when he is all tuffed up and coughing he has to take it off so some nights we are on and off - on and off and neither of us getting much sleep.
I have post-polio syndrome and fall every once in awhile. Legs are the weak point - most affected by the polio I had as a child. Muscle fatigue and fatigue in general are symptoms. Soon I will have to have help as bathing and even turning him in bed are getting more difficult......not to mention that I am not 30 anymore!
I have post-polio syndrome and fall every once in awhile. Legs are the weak point - most affected by the polio I had as a child. Muscle fatigue and fatigue in general are symptoms. Soon I will have to have help as bathing and even turning him in bed are getting more difficult......not to mention that I am not 30 anymore!
MtPockets
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Why you are just a spring chicken compared to an old goat like me. I just turned 61.
Yes, the rumor is true I'm almost as old as dirt. :-D
Don't feel bad about complaining on here, we all need a place to vent sometimes.:shock: Bring it on, We can take it. It will make you feel better, maybe.
God Bless
Capt AL
Yes, the rumor is true I'm almost as old as dirt. :-D
Don't feel bad about complaining on here, we all need a place to vent sometimes.:shock: Bring it on, We can take it. It will make you feel better, maybe.
God Bless
Capt AL
requip for restless leg syndrom
al,
my dr. did give me requip, but that did not stop the constant aching in my lower legs at night, and sometimes even during the day. so, he prescribed a pill that is for pain right at the nerve endings and that stopped that pain almost immediately. it is called gabapentin 600 mg, one at bedtime. this worked wonders for me...... however, my husband told me that as soon as i went to sleep, and this new pill does help you sleep, my legs started kicking and kept him awake for 2 nights. on the third night, my right leg started moving and i knew it was restless leg syndrome also.
so, i asked my pharmacist the next day, could i take requip for rls and the gabapentin also, and she said yes.
so, i hope this ans. your question. as for that other med you take, i'd ask my pharmacist about that. bec. my granddaughter takes it, and says it is just for sleep, and solves nothing. her new dr. will not prescribe it for her and says it is not a good medicine.
hope this helps.
jackiemax
al,
my dr. did give me requip, but that did not stop the constant aching in my lower legs at night, and sometimes even during the day. so, he prescribed a pill that is for pain right at the nerve endings and that stopped that pain almost immediately. it is called gabapentin 600 mg, one at bedtime. this worked wonders for me...... however, my husband told me that as soon as i went to sleep, and this new pill does help you sleep, my legs started kicking and kept him awake for 2 nights. on the third night, my right leg started moving and i knew it was restless leg syndrome also.
so, i asked my pharmacist the next day, could i take requip for rls and the gabapentin also, and she said yes.
so, i hope this ans. your question. as for that other med you take, i'd ask my pharmacist about that. bec. my granddaughter takes it, and says it is just for sleep, and solves nothing. her new dr. will not prescribe it for her and says it is not a good medicine.
hope this helps.
jackiemax
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