Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hello Amy, I really have no suggestions for you since my experience with the caregiving responsibilities is different from yours--guess we can all say that, can't we?! However, let me encourage you by saying I greatly admire your efforts on your mother's behalf and pray that you will find the answers you need . . .. . And please do not ever feel like you are a pain to us . . . I don't post often either and really liked the way you greeted everyone at the end of your message. I especially noted Belinda's name because I have not seen anything from her for a while. Do you hear from her? I hope she is ok--and you, too. Love and blessins, Mamie Burton In a message dated 11/12/02 2:02:56 AM, shydrager writes: << ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Mon, 11 Nov 2002 10:27:40 EST From: debuskbunch@... Subject: RE : (MSA) : Need Some Advice? Hello to all of you! Glad to see that you all are OK from the storms. Well I have crawled out from under my rock and need a little help if someone can? First, Thanks for the Levequin info (about a year ago) I hope you are doing OK! OK my mama Loretta is once again battling the old UTI'S! She has had constant back to back after her hospitalization a year ago! ( IV Cipro) Remember though she bounced back to her old self within a few weeks! WI am beginning to get very worried about her lately, not her mind of course still sharp as a tack! And she is so strong and tough (a fighter) ! This last RX they called in Ampicillian, seems the Levoquin just isn't doing it anymore! She has had a complete bladder exam and washing out and told to drink 70 ounces of liquids a day! Also put on lasix (spelling ?) to help flush her out! What next? I know there is some infection still there . Also she has been aspirating a little lately. She has been doing great with her swallowing since symptoms (1997) Diagnosed (1998) .You all know the drill-----Parkinson's, Then MSA (shydrager) Then about 8 to 10 months ago (PSP) ! I am still with her practically 24/7 . Although my sister and step-dad have improved ? I still am not with her fully on SAT and SUNDAYS. Then the lessening of fluids happen and the cathing and not much rest! She seems to do great when she has her rest--with her speech, swallowing, etc. I have an appt. w/ her Doc on 12/18/2002. But I think I need to call earlier! (Neurologist) I know this declining or progression hits fast but she has been doing so good for 5 to 6 years! It all of a sudden is like a slap in the face! Everything at one time! Yes, I know the disease is very unpredictable but damn! I know you said when the levoquin goes that is pretty much it for oral RX. The nurse said so- by mouth- anything stronger IV. But I think we all know from experience that we seem to know a little more! I still keep up with the post but I felt as if I was more of a pain than what I was worth, but I am here now with my novel any suggestions? Timo - hope thinks are better Barbs - Hello to you both Pam- Thanks for listening Vera- Hope you and Fred are better Deb- Glad to see you back, hope things keep going OK Aletta - I love your daily post- Paintings-Advice-Cartoons,etc. Hope you are OK and your family Bill - Hello to you - I see the girls have been easy on you lately! Aida - Hope all is well! Annette/Belinda - Hello to you girls Marilyn - Hope you are doing OK! And Hello to all of you ! I still keep up! Oh - How is ? Love and blessings to you all! Still here in North Carolina Amy DeBusk / mama Loretta Take Care >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hello Amy, I really have no suggestions for you since my experience with the caregiving responsibilities is different from yours--guess we can all say that, can't we?! However, let me encourage you by saying I greatly admire your efforts on your mother's behalf and pray that you will find the answers you need . . .. . And please do not ever feel like you are a pain to us . . . I don't post often either and really liked the way you greeted everyone at the end of your message. I especially noted Belinda's name because I have not seen anything from her for a while. Do you hear from her? I hope she is ok--and you, too. Love and blessins, Mamie Burton In a message dated 11/12/02 2:02:56 AM, shydrager writes: << ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Mon, 11 Nov 2002 10:27:40 EST From: debuskbunch@... Subject: RE : (MSA) : Need Some Advice? Hello to all of you! Glad to see that you all are OK from the storms. Well I have crawled out from under my rock and need a little help if someone can? First, Thanks for the Levequin info (about a year ago) I hope you are doing OK! OK my mama Loretta is once again battling the old UTI'S! She has had constant back to back after her hospitalization a year ago! ( IV Cipro) Remember though she bounced back to her old self within a few weeks! WI am beginning to get very worried about her lately, not her mind of course still sharp as a tack! And she is so strong and tough (a fighter) ! This last RX they called in Ampicillian, seems the Levoquin just isn't doing it anymore! She has had a complete bladder exam and washing out and told to drink 70 ounces of liquids a day! Also put on lasix (spelling ?) to help flush her out! What next? I know there is some infection still there . Also she has been aspirating a little lately. She has been doing great with her swallowing since symptoms (1997) Diagnosed (1998) .You all know the drill-----Parkinson's, Then MSA (shydrager) Then about 8 to 10 months ago (PSP) ! I am still with her practically 24/7 . Although my sister and step-dad have improved ? I still am not with her fully on SAT and SUNDAYS. Then the lessening of fluids happen and the cathing and not much rest! She seems to do great when she has her rest--with her speech, swallowing, etc. I have an appt. w/ her Doc on 12/18/2002. But I think I need to call earlier! (Neurologist) I know this declining or progression hits fast but she has been doing so good for 5 to 6 years! It all of a sudden is like a slap in the face! Everything at one time! Yes, I know the disease is very unpredictable but damn! I know you said when the levoquin goes that is pretty much it for oral RX. The nurse said so- by mouth- anything stronger IV. But I think we all know from experience that we seem to know a little more! I still keep up with the post but I felt as if I was more of a pain than what I was worth, but I am here now with my novel any suggestions? Timo - hope thinks are better Barbs - Hello to you both Pam- Thanks for listening Vera- Hope you and Fred are better Deb- Glad to see you back, hope things keep going OK Aletta - I love your daily post- Paintings-Advice-Cartoons,etc. Hope you are OK and your family Bill - Hello to you - I see the girls have been easy on you lately! Aida - Hope all is well! Annette/Belinda - Hello to you girls Marilyn - Hope you are doing OK! And Hello to all of you ! I still keep up! Oh - How is ? Love and blessings to you all! Still here in North Carolina Amy DeBusk / mama Loretta Take Care >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Amy, I may have already answered you once. If I have, I have no idea what I said at that point. I am ok, but not as focused as I need to be to move on, but I will be soon!! I am very sorry that your mom is having new or more problems. This desease just seems to rob the patient of every ounce of dignity. It is bad! Bad! Bad!! I say when in doubt, call the doctor. One of the physcians that worked with my husband says that he believes that my " dogging " of the doctors and others made my husband's last few years more comfortable. Of course, it also cost us much more money, because most of the things we worked with were not covered by insurance. As I look back, things seemed to change fairly rapidly once Speeedy started really going down hill. The swallowing problem was one of the most difficult things for me to deal with. I was so worried that he would choke to death at home and I would not be able to do anything for him. We had come close a couple of times. The last big episode before the Vanderbilt trip was a pill that he had taken the night before (about 20 hours earlier). It had not dissolved. Where it had been during that time, we do not know. He, too, was able to function better when he had his rest. In the beginning when I thought he needed to rest, we would almost have to fight to get him to lay down to rest. He was determined that he was going to keep his independence as long as possible. The last several months, after he had been up for a few hours, he would almost be begging for me to get him in bed. Best wishes to you. Please know that I think of you and your mom and your struggle. If I can help, feel free to call, . Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Amy, I may have already answered you once. If I have, I have no idea what I said at that point. I am ok, but not as focused as I need to be to move on, but I will be soon!! I am very sorry that your mom is having new or more problems. This desease just seems to rob the patient of every ounce of dignity. It is bad! Bad! Bad!! I say when in doubt, call the doctor. One of the physcians that worked with my husband says that he believes that my " dogging " of the doctors and others made my husband's last few years more comfortable. Of course, it also cost us much more money, because most of the things we worked with were not covered by insurance. As I look back, things seemed to change fairly rapidly once Speeedy started really going down hill. The swallowing problem was one of the most difficult things for me to deal with. I was so worried that he would choke to death at home and I would not be able to do anything for him. We had come close a couple of times. The last big episode before the Vanderbilt trip was a pill that he had taken the night before (about 20 hours earlier). It had not dissolved. Where it had been during that time, we do not know. He, too, was able to function better when he had his rest. In the beginning when I thought he needed to rest, we would almost have to fight to get him to lay down to rest. He was determined that he was going to keep his independence as long as possible. The last several months, after he had been up for a few hours, he would almost be begging for me to get him in bed. Best wishes to you. Please know that I think of you and your mom and your struggle. If I can help, feel free to call, . Marilyn in TN Quote Link to comment Share on other sites More sharing options...
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