Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 Donna, What Mike said. Actually, I sometimes think I am better now than I was my first 12 to 18 months. I think it is because, as I have adapted, it just seems to not be as bad. A lot of times new folks will mention something that reminds me, " Oh, yeah, I had that. I forgot. It just went away. " As hard as it is to try not to worry or wonder, I really think it is in your best interest to take Mike's advice and dwell on the good stuff. Can't change the bad anyway, and worrying about it, thinking about it, wondering about it, only adds to your stress, which in turn will make your overall condition worse. I firmly believe that " attitude is everything " . I hope I don't sound ike I am trying to tell you how you feel. I'd never do that. We are all just too different. No one can know how each of us feels or what will work for us. Just because it works for me sure doesn't mean it will cure you. I think the best I can do for you is share my thoughts and ideas and let you decide what you want to try. I wish I could help you get past all your initial fears and worries. I think, at some point, most of us just settled into this new way of living and I know, it was at that point, my life started to get easier. Once I knew it wasn't gonna' kill me, I couldn't change it and no one else could change it for me, I think I decided I'd better just get on with the rest of my life. Of course, I'd rather not have PLS, but then I'd also like to be rich, skinny and pretty. Those things aren't going to happen either, but they don't keep me from being happy and positive. I have too many other things to think about. Ronnie Re: > Donna, > > It is difficult to determine how fast PLS progresses, as each case is > different. Rita has had it for over 20 years and gets along better than > some who have just been diagnosed 2 or less years ago. I am slow > progressing, also. I was off work for 18 1/2 months from 2/95 to 8/96. I > had to return in a different job than what I had before, but it was the one > I had begun working at the State Hospital with - a member of the Psychology > Department. I'm a licensed mental health counselor, marriage and family > therapist and clinical social worker (Trying to cover all the bases.) I > have been able to do the job for almost 6 years now. Still drive and found > out I can drive 2 and 1/2 hours one way. I don't believe I can turn around > and drive back the same day, however. I still fall occasionally and some of > them require trips to ER, but that has only happened once this year, in > January. I have had to see the State Hospital's doctor for x-rays once, > too. I fell and blood started pouring out my nose. This was in the office > area and a Social Worker, who also has a tendency to fall, was right behind > me and said that I just seemed to fall stiff and on my face. I didn't trip, > get pushed, or anything. I just went down with no warning. My nose wasn't > broken, but I did have two cracked ribs. They healed quickly, Thank You, God. > > The progression I have noticed is an increase in spasticity, which was > relieved by an increase in my baclofen. Either that, or the four wheeled > walker a doctor with whom I work loaned me. I got both the same day and > don't know which is the important variable. I have frequent close calls > with falls, but the other day my left stiffened while I was walking and I > didn't fall. This has always led to a fall for me. Also, I have noticed > some problems with my neck and shoulders getting stiffer and sore almost > daily. This has decreased some, again after the med increase and the use of > the wheeled walker. Still no way to determine the more important variable > without changing one of them, which I am not willing to do. > > My hands have become stiffer and my ankles and lower legs have begun to > swell and stiffen during the latter part of the day, but I don't believe it > related to PLS. I'm not going to make it the scapegoat for everything, > unless it is convenient for me > > I know others have been telling you some of their stories and I hope some > will also tell you about their progression. I can only tell you what my > neurologist told me when pressed for what I could expect in the future. > " I'm not a fortune teller. Only time will tell. " I don't worry about it. I > let tomorrow worry about itself. Attitude seems the best way to manage this > disease that " sucks. " With a good attitude, your good days are much more > frequent than your bad days. If you pay too much attention to the negative > and not the positive, then your mind will automatically look for the bad > and ignore the good. The healthy mind does not judge, it just takes in what > we give it. We make it what we want it to be according to our belief system. > > Sorry, I just felt I had to do a lecture. I get carried away sometimes. > > Take good care of yourself and look for the positives. > > Mike Gray Logansport IN > > At 12:25 PM 7/6/02 +0000, you wrote: > >Hi , > >Thanks for responding to my question. You helped me understand PLS > >much better. > >You said your PLS was fast, how fast? I am trying to gage where I > >am with my progression. I have a note book I try to keep gaged, > >but when I have a good day, I think I'm just beeing too pesimistic > >with my ratings the day before. How long does it take before you > >say this is worse (instead of saying: I'm just having a bad day)? > >Thanks for your time, > >Donna > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 Dear Donna, Ronnie said: Of course, I'd rather not have PLS, but then I'd also like to be rich, skinny and pretty. Those things aren't going to happen either, but they don't keep me from being happy and positive. I have too many other things to think about. While she gave you some wonderful advice, she was horribly wrong in one area. She said: " I'd also like to be rich, skinny and pretty. " She may not be rich, she's just a little bit away from being skinny, BUT she is one of the most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet as they come so don't let her mislead you. She's also from WV so she has to be good!!! Take care and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 Dear Donna, Ronnie said: Of course, I'd rather not have PLS, but then I'd also like to be rich, skinny and pretty. Those things aren't going to happen either, but they don't keep me from being happy and positive. I have too many other things to think about. While she gave you some wonderful advice, she was horribly wrong in one area. She said: " I'd also like to be rich, skinny and pretty. " She may not be rich, she's just a little bit away from being skinny, BUT she is one of the most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet as they come so don't let her mislead you. She's also from WV so she has to be good!!! Take care and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 Dear Donna, Ronnie said: Of course, I'd rather not have PLS, but then I'd also like to be rich, skinny and pretty. Those things aren't going to happen either, but they don't keep me from being happy and positive. I have too many other things to think about. While she gave you some wonderful advice, she was horribly wrong in one area. She said: " I'd also like to be rich, skinny and pretty. " She may not be rich, she's just a little bit away from being skinny, BUT she is one of the most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet as they come so don't let her mislead you. She's also from WV so she has to be good!!! Take care and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 AW, SHUCKS! I hope no one finds out how much you got paid to say that, but thank you just the same. Takes one to know one. Re: Donna > Dear Donna, > > Ronnie said: > Of course, I'd rather not have PLS, but then I'd also like to be rich, > skinny and pretty. Those things aren't going to happen either, but they > don't keep me from being happy and positive. I have too many other things > to think about. > > While she gave you some wonderful advice, she was horribly wrong in one area. > She said: " I'd also like to be rich, skinny and pretty. " She may not be > rich, she's just a little bit away from being skinny, BUT she is one of the > most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet > as they come so don't let her mislead you. She's also from WV so she has to > be good!!! Take care and God Bless. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 AW, SHUCKS! I hope no one finds out how much you got paid to say that, but thank you just the same. Takes one to know one. Re: Donna > Dear Donna, > > Ronnie said: > Of course, I'd rather not have PLS, but then I'd also like to be rich, > skinny and pretty. Those things aren't going to happen either, but they > don't keep me from being happy and positive. I have too many other things > to think about. > > While she gave you some wonderful advice, she was horribly wrong in one area. > She said: " I'd also like to be rich, skinny and pretty. " She may not be > rich, she's just a little bit away from being skinny, BUT she is one of the > most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet > as they come so don't let her mislead you. She's also from WV so she has to > be good!!! Take care and God Bless. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 AW, SHUCKS! I hope no one finds out how much you got paid to say that, but thank you just the same. Takes one to know one. Re: Donna > Dear Donna, > > Ronnie said: > Of course, I'd rather not have PLS, but then I'd also like to be rich, > skinny and pretty. Those things aren't going to happen either, but they > don't keep me from being happy and positive. I have too many other things > to think about. > > While she gave you some wonderful advice, she was horribly wrong in one area. > She said: " I'd also like to be rich, skinny and pretty. " She may not be > rich, she's just a little bit away from being skinny, BUT she is one of the > most BEAUTIFUL people I have ever had the honor of meeting. She's as sweet > as they come so don't let her mislead you. She's also from WV so she has to > be good!!! Take care and God Bless. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 I have to add an emphatic " ditto " to the sentiments about Ronnie. She is indeed, a beautiful person. Dolores P.S. Ronnie, how much are you paying us? I'll have to adjust my next estimated IRS payment. Re: Donna > > > > Dear Donna, > > > > Ronnie said: > > Of course, I'd rather not have PLS, but then I'd also like to be rich, > > skinny and pretty. Those things aren't going to happen either, but they > > don't keep me from being happy and positive. I have too many other things > > to think about. > > > > While she gave you some wonderful advice, she was horribly wrong in one > area. > > She said: " I'd also like to be rich, skinny and pretty. " She may not > be > > rich, she's just a little bit away from being skinny, BUT she is one of > the > > most BEAUTIFUL people I have ever had the honor of meeting. She's as > sweet > > as they come so don't let her mislead you. She's also from WV so she has > to > > be good!!! Take care and God Bless. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 I have to add an emphatic " ditto " to the sentiments about Ronnie. She is indeed, a beautiful person. Dolores P.S. Ronnie, how much are you paying us? I'll have to adjust my next estimated IRS payment. Re: Donna > > > > Dear Donna, > > > > Ronnie said: > > Of course, I'd rather not have PLS, but then I'd also like to be rich, > > skinny and pretty. Those things aren't going to happen either, but they > > don't keep me from being happy and positive. I have too many other things > > to think about. > > > > While she gave you some wonderful advice, she was horribly wrong in one > area. > > She said: " I'd also like to be rich, skinny and pretty. " She may not > be > > rich, she's just a little bit away from being skinny, BUT she is one of > the > > most BEAUTIFUL people I have ever had the honor of meeting. She's as > sweet > > as they come so don't let her mislead you. She's also from WV so she has > to > > be good!!! Take care and God Bless. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 I have to add an emphatic " ditto " to the sentiments about Ronnie. She is indeed, a beautiful person. Dolores P.S. Ronnie, how much are you paying us? I'll have to adjust my next estimated IRS payment. Re: Donna > > > > Dear Donna, > > > > Ronnie said: > > Of course, I'd rather not have PLS, but then I'd also like to be rich, > > skinny and pretty. Those things aren't going to happen either, but they > > don't keep me from being happy and positive. I have too many other things > > to think about. > > > > While she gave you some wonderful advice, she was horribly wrong in one > area. > > She said: " I'd also like to be rich, skinny and pretty. " She may not > be > > rich, she's just a little bit away from being skinny, BUT she is one of > the > > most BEAUTIFUL people I have ever had the honor of meeting. She's as > sweet > > as they come so don't let her mislead you. She's also from WV so she has > to > > be good!!! Take care and God Bless. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 I am going to attend the support group in Somerset, which is about one hr. from here. I am going to stand up and tell my story, and hopefully, there is someone there who is close by to me. I also plan to print up some flyers and I was thinking of putting them into pain centers. Any advice on what to print? Donna Tom Nation wrote: Donna, Do you have anyone that could help you get a group started? That would be very helpful. If you can't, what I've heard to do is fix up some pamphlets about RSD and put your name/number on the back as a contact. See if you can put them in doctor offices, waiting rooms, wherever someone might pick it up and read it. When you find others with RSD you can see if they would be willing to help. Deb and I worked together in making fliers and taking them to pharmacies, pain centers, where they do massage therapy, medical equipment stores, etc. Some places have a policy that they can't put something up, but they can let customers know about it. We put notices in newspapers, TV stations, etc. Even a letter to the editor could be helpful. It has been for us. You need to find a place that would be willing to let you meet--preferably free. Ours is held in a hospital conference room. At first you will want to spend time getting acquainted and telling your story. You could also speak on a topic that you have researched, and maybe provide information you've found on the subject. As the group grows, you can start to invite speakers. Hope this helps and I hope you can get something going.Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 I am going to attend the support group in Somerset, which is about one hr. from here. I am going to stand up and tell my story, and hopefully, there is someone there who is close by to me. I also plan to print up some flyers and I was thinking of putting them into pain centers. Any advice on what to print? Donna Tom Nation wrote: Donna, Do you have anyone that could help you get a group started? That would be very helpful. If you can't, what I've heard to do is fix up some pamphlets about RSD and put your name/number on the back as a contact. See if you can put them in doctor offices, waiting rooms, wherever someone might pick it up and read it. When you find others with RSD you can see if they would be willing to help. Deb and I worked together in making fliers and taking them to pharmacies, pain centers, where they do massage therapy, medical equipment stores, etc. Some places have a policy that they can't put something up, but they can let customers know about it. We put notices in newspapers, TV stations, etc. Even a letter to the editor could be helpful. It has been for us. You need to find a place that would be willing to let you meet--preferably free. Ours is held in a hospital conference room. At first you will want to spend time getting acquainted and telling your story. You could also speak on a topic that you have researched, and maybe provide information you've found on the subject. As the group grows, you can start to invite speakers. Hope this helps and I hope you can get something going.Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 Donna, Hope your migraines stop migrainineing! It is one of the few things I don't get very often. Only a small headache if I don't eat on time. These Yankee candles are sooo great. I gotta go get a cuke/cantalou[pe one too and a maple syrup. They just sound so yummy! My husband loves the peach one. I think that one you can smell a mile away...The honeydew melon was very mild. I had to move it close, don't think I will get that one again. My daughters are stuck on them too and found a supplier that carries them all right in town. hugs, Vonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 I third that sentiment.....keep us posted. LeanneIrn3189@... wrote: Donna, I'm Hoping & Wishing you get Positive News on Tuesday! Irene PF 03/07 Raynauds's Disease 09/07 Canada---- Original Message ----From: Joyce <janne5303>To: Breathe-Support Sent: Wed, 26 Sep 2007 10:48 amSubject: Re: Transtracheal Oxygen / Donna ... Donna, I pray to God that you get positive news on the 2nd. Let us know as soon as you know. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Well, I will find out if I'm a transplant candidate on Oct 2nd. If I'm a> candidate I will not have that done. If I'm not a candidate then I will> consider this procedure, it is not for cosmetic, I don't mind the cannula.> But I don't get enough air with just the cannula. That is why I need the> hi-ox mask with the bag to walk around. And I don't get enough flow to walk> very much. My decision is based on being able to move around more than I can> now on less oxygen. For those of us in the end stage of this disease, it is> better to live your life the best you can. And right now that is hard to do,> so this procedure may be worth checking into if I'm not a candidate. It may> help someone else too. Oxygen suppliers don't mind giving the oxygen when> the flow is low, but when it is higher and the insurance is paying the same> (the negotiated amount) and you are using about 3 times what you used to> use for the same money, the oxygen supplier wants to cut back and not give> you what you need. Thus they try to get you on a concentrator as you always> have oxygen, only when plugged in and they think you should just stay home. > Been fighting this fight since the first of the year. That is why I now have> a liquid tank also that gets filled once a month. Hopefully things will> change soon. We should not have to fight for air to be move. > > > Donna> Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 I third that sentiment.....keep us posted. LeanneIrn3189@... wrote: Donna, I'm Hoping & Wishing you get Positive News on Tuesday! Irene PF 03/07 Raynauds's Disease 09/07 Canada---- Original Message ----From: Joyce <janne5303>To: Breathe-Support Sent: Wed, 26 Sep 2007 10:48 amSubject: Re: Transtracheal Oxygen / Donna ... Donna, I pray to God that you get positive news on the 2nd. Let us know as soon as you know. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Well, I will find out if I'm a transplant candidate on Oct 2nd. If I'm a> candidate I will not have that done. If I'm not a candidate then I will> consider this procedure, it is not for cosmetic, I don't mind the cannula.> But I don't get enough air with just the cannula. That is why I need the> hi-ox mask with the bag to walk around. And I don't get enough flow to walk> very much. My decision is based on being able to move around more than I can> now on less oxygen. For those of us in the end stage of this disease, it is> better to live your life the best you can. And right now that is hard to do,> so this procedure may be worth checking into if I'm not a candidate. It may> help someone else too. Oxygen suppliers don't mind giving the oxygen when> the flow is low, but when it is higher and the insurance is paying the same> (the negotiated amount) and you are using about 3 times what you used to> use for the same money, the oxygen supplier wants to cut back and not give> you what you need. Thus they try to get you on a concentrator as you always> have oxygen, only when plugged in and they think you should just stay home. > Been fighting this fight since the first of the year. That is why I now have> a liquid tank also that gets filled once a month. Hopefully things will> change soon. We should not have to fight for air to be move. > > > Donna> Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 I third that sentiment.....keep us posted. LeanneIrn3189@... wrote: Donna, I'm Hoping & Wishing you get Positive News on Tuesday! Irene PF 03/07 Raynauds's Disease 09/07 Canada---- Original Message ----From: Joyce <janne5303>To: Breathe-Support Sent: Wed, 26 Sep 2007 10:48 amSubject: Re: Transtracheal Oxygen / Donna ... Donna, I pray to God that you get positive news on the 2nd. Let us know as soon as you know. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Well, I will find out if I'm a transplant candidate on Oct 2nd. If I'm a> candidate I will not have that done. If I'm not a candidate then I will> consider this procedure, it is not for cosmetic, I don't mind the cannula.> But I don't get enough air with just the cannula. That is why I need the> hi-ox mask with the bag to walk around. And I don't get enough flow to walk> very much. My decision is based on being able to move around more than I can> now on less oxygen. For those of us in the end stage of this disease, it is> better to live your life the best you can. And right now that is hard to do,> so this procedure may be worth checking into if I'm not a candidate. It may> help someone else too. Oxygen suppliers don't mind giving the oxygen when> the flow is low, but when it is higher and the insurance is paying the same> (the negotiated amount) and you are using about 3 times what you used to> use for the same money, the oxygen supplier wants to cut back and not give> you what you need. Thus they try to get you on a concentrator as you always> have oxygen, only when plugged in and they think you should just stay home. > Been fighting this fight since the first of the year. That is why I now have> a liquid tank also that gets filled once a month. Hopefully things will> change soon. We should not have to fight for air to be move. > > > Donna> Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
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