Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Shelby I totally understand you, I been there with my daughter, I can feel you joy , I really wish your daughter gets better little by little , Im pretty sure all of us in this situacion live day by day and enjoy the little improvements in our childs life, God bless you and your daughter ..william hawthorne whhawt@...> wrote: Hello everyone, We are happy to say our daughter has improved some. After six months of laying on the sofa needing total care and not speaking, she is now talking (Sometimes it makes no sense.), feeding herself some meals and this morning requested to sleep late. Her neurologist is trying her on Aricept. Whether that is what has caused the improvement we don't know. We are enjoying the improvement while we have it. We are all too aware that it may not last long. Shelby Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Shelby I am so glad to hear your news. Thank you so much for taking the time to let us know. laurie > Hello everyone, > We are happy to say our daughter has improved some. After six months > of laying on the sofa needing total care and not speaking, she is now > talking (Sometimes it makes no sense.), feeding herself some meals and > this morning requested to sleep late. Her neurologist is trying her on > Aricept. Whether that is what has caused the improvement we don't > know. We are enjoying the improvement while we have it. We are all > too aware that it may not last long. Shelby > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Shelby, So happy to hear that you are seeing some improvement. I hope the improvement continues and you have many more beautiful days to share. Keeping you all in my prayers. Thank you for sharing your wonderful news!! Hugs, Ann-Marie Good news Hello everyone, We are happy to say our daughter has improved some. After six months of laying on the sofa needing total care and not speaking, she is now talking (Sometimes it makes no sense.), feeding herself some meals and this morning requested to sleep late. Her neurologist is trying her on Aricept. Whether that is what has caused the improvement we don't know. We are enjoying the improvement while we have it. We are all too aware that it may not last long. Shelby Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 That is wonderful news Shelby. No doubt it has a lot to do with all the love and care you have been giving her. Good news Hello everyone, We are happy to say our daughter has improved some. After six months of laying on the sofa needing total care and not speaking, she is now talking (Sometimes it makes no sense.), feeding herself some meals and this morning requested to sleep late. Her neurologist is trying her on Aricept. Whether that is what has caused the improvement we don't know. We are enjoying the improvement while we have it. We are all too aware that it may not last long. Shelby Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Shelby, Thank you so much for sharing your joy with the rest of us. I hope your daughter continues to improve. Hugs, william hawthorne wrote: >Hello everyone, >We are happy to say our daughter has improved some. After six months >of laying on the sofa needing total care and not speaking, she is now >talking (Sometimes it makes no sense.), feeding herself some meals and >this morning requested to sleep late. Her neurologist is trying her on >Aricept. Whether that is what has caused the improvement we don't >know. We are enjoying the improvement while we have it. We are all >too aware that it may not last long. Shelby > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 -Hi Laurie, That is good news missed you on the chat take care. Hugs, Donna K-- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Hi > > My Baclofen was increased last Friday and I have not had a single > episode of dystonia. I'm still getting some minor cramping, but living > with that is easy. I've been able to start back on a few stretches and > will gradually increase them in hopes of getting back to my > pre-dystonia level. > > laurie > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hi Laurie, I have been taking Baclofen for years now. It is one of my wonder drugs also. I also take sinemet too. Have you tried that? --- amerikooch@... wrote: > -Hi Laurie, > That is good news missed you on the chat take > care. > Hugs, > Donna K-- Laurie Fitzgerald > laurie.fitzgerald@...> wrote: > > Hi > > > > My Baclofen was increased last Friday and I have > not had a single > > episode of dystonia. I'm still getting some minor > cramping, but living > > with that is easy. I've been able to start back on > a few stretches and > > will gradually increase them in hopes of getting > back to my > > pre-dystonia level. > > > > laurie > > > > > > Medical advice, information, opinions, data and > statements contained herein are not necessarily > those of the list moderators. The author of this e > mail is entirely responsible for its content. List > members are reminded of their responsibility to > evaluate the content of the postings and consult > with their physicians regarding changes in their own > treatment. > > > > Personal attacks are not permitted on the list and > anyone who sends one is automatically moderated or > removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Irene I haven't taken Sinemet. It is out there in the wings. The Baclofen dose I was on before worked for about 4 of the 8 hours. Increasing the number of doses plus an increase in my nighttime dose has been absolutely wonderful. I e-mailed my neuro to let him know how great things were going. His response was " fantastic " . Do you have dystonia? Have you had any genetic testing done? I ask as I found an article about adult onset dystonia in mito with a defect in a gene in mtDNA - complex I. I have that defect which was felt to be insignificant at the time of testing. laurie > Hi Laurie, I have been taking Baclofen for years now. > It is one of my wonder drugs also. I also take sinemet > too. Have you tried that? > > > --- amerikooch@... wrote: > > > -Hi Laurie, > > That is good news missed you on the chat take > > care. > > Hugs, > > Donna K-- Laurie Fitzgerald > > laurie.fitzgerald@...> wrote: > > > Hi > > > > > > My Baclofen was increased last Friday and I have > > not had a single > > > episode of dystonia. I'm still getting some minor > > cramping, but living > > > with that is easy. I've been able to start back on > > a few stretches and > > > will gradually increase them in hopes of getting > > back to my > > > pre-dystonia level. > > > > > > laurie > > > > > > > > > Medical advice, information, opinions, data and > > statements contained herein are not necessarily > > those of the list moderators. The author of this e > > mail is entirely responsible for its content. List > > members are reminded of their responsibility to > > evaluate the content of the postings and consult > > with their physicians regarding changes in their own > > treatment. > > > > > > Personal attacks are not permitted on the list and > > anyone who sends one is automatically moderated or > > removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Hi Laurie: regarding baclofen. I take it two times a day now and upped dosage. But I had mentioned simemet. I take cardopa/levodop 25/100 it is cheaper than sinemet. And it's another wonder drug. --- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Irene > > I haven't taken Sinemet. It is out there in the > wings. The Baclofen > dose I was on before worked for about 4 of the 8 > hours. Increasing the > number of doses plus an increase in my nighttime > dose has been > absolutely wonderful. I e-mailed my neuro to let him > know how great > things were going. His response was " fantastic " . > > Do you have dystonia? Have you had any genetic > testing done? I ask as > I found an article about adult onset dystonia in > mito with a defect in > a gene in mtDNA - complex I. I have that defect > which was felt to be > insignificant at the time of testing. > > laurie > > On 5/4/06, Irene Sussmann issnowwhite54@...> > wrote: > > Hi Laurie, I have been taking Baclofen for years > now. > > It is one of my wonder drugs also. I also take > sinemet > > too. Have you tried that? > > > > > > --- amerikooch@... wrote: > > > > > -Hi Laurie, > > > That is good news missed you on the chat take > > > care. > > > Hugs, > > > Donna K-- Laurie Fitzgerald > > > laurie.fitzgerald@...> wrote: > > > > Hi > > > > > > > > My Baclofen was increased last Friday and I > have > > > not had a single > > > > episode of dystonia. I'm still getting some > minor > > > cramping, but living > > > > with that is easy. I've been able to start > back on > > > a few stretches and > > > > will gradually increase them in hopes of > getting > > > back to my > > > > pre-dystonia level. > > > > > > > > laurie > > > > > > > > > > > > Medical advice, information, opinions, data > and > > > statements contained herein are not necessarily > > > those of the list moderators. The author of > this e > > > mail is entirely responsible for its content. > List > > > members are reminded of their responsibility to > > > evaluate the content of the postings and > consult > > > with their physicians regarding changes in > their own > > > treatment. > > > > > > > > Personal attacks are not permitted on the > list and > > > anyone who sends one is automatically moderated > or > > > removed depending on the severity of the > attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Irene After last night, I may need a wonder drug. I went 10 days without any dystonia and only mild cramping and then everything returned with a vengence yesterday evening. So far, so good today, so I'm hoping yesterday was a blast from the past and has returned to hiding. I am taking 10 mg at breakfast, lunch and dinner and 20 mg. at bedtime. I can only go up another 10 mg., so keep your fingers crossed for a good night tonight. laurie > Hi Laurie: regarding baclofen. I take it two times a > day now and upped dosage. But I had mentioned simemet. > I take cardopa/levodop 25/100 it is cheaper than > sinemet. And it's another wonder drug. > > > --- Laurie Fitzgerald laurie.fitzgerald@...> > wrote: > > > Irene > > > > I haven't taken Sinemet. It is out there in the > > wings. The Baclofen > > dose I was on before worked for about 4 of the 8 > > hours. Increasing the > > number of doses plus an increase in my nighttime > > dose has been > > absolutely wonderful. I e-mailed my neuro to let him > > know how great > > things were going. His response was " fantastic " . > > > > Do you have dystonia? Have you had any genetic > > testing done? I ask as > > I found an article about adult onset dystonia in > > mito with a defect in > > a gene in mtDNA - complex I. I have that defect > > which was felt to be > > insignificant at the time of testing. > > > > laurie > > > > On 5/4/06, Irene Sussmann issnowwhite54@...> > > wrote: > > > Hi Laurie, I have been taking Baclofen for years > > now. > > > It is one of my wonder drugs also. I also take > > sinemet > > > too. Have you tried that? > > > > > > > > > --- amerikooch@... wrote: > > > > > > > -Hi Laurie, > > > > That is good news missed you on the chat take > > > > care. > > > > Hugs, > > > > Donna K-- Laurie Fitzgerald > > > > laurie.fitzgerald@...> wrote: > > > > > Hi > > > > > > > > > > My Baclofen was increased last Friday and I > > have > > > > not had a single > > > > > episode of dystonia. I'm still getting some > > minor > > > > cramping, but living > > > > > with that is easy. I've been able to start > > back on > > > > a few stretches and > > > > > will gradually increase them in hopes of > > getting > > > > back to my > > > > > pre-dystonia level. > > > > > > > > > > laurie > > > > > > > > > > > > > > > Medical advice, information, opinions, data > > and > > > > statements contained herein are not necessarily > > > > those of the list moderators. The author of > > this e > > > > mail is entirely responsible for its content. > > List > > > > members are reminded of their responsibility to > > > > evaluate the content of the postings and > > consult > > > > with their physicians regarding changes in > > their own > > > > treatment. > > > > > > > > > > Personal attacks are not permitted on the > > list and > > > > anyone who sends one is automatically moderated > > or > > > > removed depending on the severity of the > > attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Hi Laurie, I am hopeing right along with you, that that episode was just a blast from the past. You sure have had more than your share lately. Stress also causes so many problems. So don't let it get to you. Hope you will get some relief soon. --- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Irene > > After last night, I may need a wonder drug. I went > 10 days without any > dystonia and only mild cramping and then everything > returned with a > vengence yesterday evening. So far, so good today, > so I'm hoping > yesterday was a blast from the past and has returned > to hiding. I am > taking 10 mg at breakfast, lunch and dinner and 20 > mg. at bedtime. I > can only go up another 10 mg., so keep your fingers > crossed for a good > night tonight. > > laurie > > On 5/9/06, Irene Sussmann issnowwhite54@...> > wrote: > > Hi Laurie: regarding baclofen. I take it two > times a > > day now and upped dosage. But I had mentioned > simemet. > > I take cardopa/levodop 25/100 it is cheaper than > > sinemet. And it's another wonder drug. > > > > > > --- Laurie Fitzgerald > laurie.fitzgerald@...> > > wrote: > > > > > Irene > > > > > > I haven't taken Sinemet. It is out there in the > > > wings. The Baclofen > > > dose I was on before worked for about 4 of the > 8 > > > hours. Increasing the > > > number of doses plus an increase in my > nighttime > > > dose has been > > > absolutely wonderful. I e-mailed my neuro to > let him > > > know how great > > > things were going. His response was > " fantastic " . > > > > > > Do you have dystonia? Have you had any genetic > > > testing done? I ask as > > > I found an article about adult onset dystonia > in > > > mito with a defect in > > > a gene in mtDNA - complex I. I have that defect > > > which was felt to be > > > insignificant at the time of testing. > > > > > > laurie > > > > > > On 5/4/06, Irene Sussmann > issnowwhite54@...> > > > wrote: > > > > Hi Laurie, I have been taking Baclofen for > years > > > now. > > > > It is one of my wonder drugs also. I also > take > > > sinemet > > > > too. Have you tried that? > > > > > > > > > > > > --- amerikooch@... wrote: > > > > > > > > > -Hi Laurie, > > > > > That is good news missed you on the chat > take > > > > > care. > > > > > Hugs, > > > > > Donna K-- Laurie Fitzgerald > > > > > laurie.fitzgerald@...> wrote: > > > > > > Hi > > > > > > > > > > > > My Baclofen was increased last Friday > and I > > > have > > > > > not had a single > > > > > > episode of dystonia. I'm still getting > some > > > minor > > > > > cramping, but living > > > > > > with that is easy. I've been able to > start > > > back on > > > > > a few stretches and > > > > > > will gradually increase them in hopes of > > > getting > > > > > back to my > > > > > > pre-dystonia level. > > > > > > > > > > > > laurie > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, > data > > > and > > > > > statements contained herein are not > necessarily > > > > > those of the list moderators. The author > of > > > this e > > > > > mail is entirely responsible for its > content. > > > List > > > > > members are reminded of their > responsibility to > > > > > evaluate the content of the postings and > > > consult > > > > > with their physicians regarding changes in > > > their own > > > > > treatment. > > > > > > > > > > > > Personal attacks are not permitted on > the > > > list and > > > > > anyone who sends one is automatically > moderated > > > or > > > > > removed depending on the severity of the > > > attack. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Irene Thanks for caring. It was only a single 24 hour period and back to relief. Now, I am trying to figure out what caused it - may never know with mito. I have a question for you and others. Do you have proximal renal tubular dysfunction? I am trying to see how many have both PRTD and dystonia (also called spasticity by some or severe cramping by others). laurie > > Hi Laurie, I am hopeing right along with you, that > that episode was just a blast from the past. You sure > have had more than your share lately. Stress also > causes so many problems. So don't let it get to you. > Hope you will get some relief soon. > > > --- Laurie Fitzgerald laurie.fitzgerald@...> > wrote: > > > Irene > > > > After last night, I may need a wonder drug. I went > > 10 days without any > > dystonia and only mild cramping and then everything > > returned with a > > vengence yesterday evening. So far, so good today, > > so I'm hoping > > yesterday was a blast from the past and has returned > > to hiding. I am > > taking 10 mg at breakfast, lunch and dinner and 20 > > mg. at bedtime. I > > can only go up another 10 mg., so keep your fingers > > crossed for a good > > night tonight. > > > > laurie > > > > On 5/9/06, Irene Sussmann issnowwhite54@...> > > wrote: > > > Hi Laurie: regarding baclofen. I take it two > > times a > > > day now and upped dosage. But I had mentioned > > simemet. > > > I take cardopa/levodop 25/100 it is cheaper than > > > sinemet. And it's another wonder drug. > > > > > > > > > --- Laurie Fitzgerald > > laurie.fitzgerald@...> > > > wrote: > > > > > > > Irene > > > > > > > > I haven't taken Sinemet. It is out there in the > > > > wings. The Baclofen > > > > dose I was on before worked for about 4 of the > > 8 > > > > hours. Increasing the > > > > number of doses plus an increase in my > > nighttime > > > > dose has been > > > > absolutely wonderful. I e-mailed my neuro to > > let him > > > > know how great > > > > things were going. His response was > > " fantastic " . > > > > > > > > Do you have dystonia? Have you had any genetic > > > > testing done? I ask as > > > > I found an article about adult onset dystonia > > in > > > > mito with a defect in > > > > a gene in mtDNA - complex I. I have that defect > > > > which was felt to be > > > > insignificant at the time of testing. > > > > > > > > laurie > > > > > > > > On 5/4/06, Irene Sussmann > > issnowwhite54@...> > > > > wrote: > > > > > Hi Laurie, I have been taking Baclofen for > > years > > > > now. > > > > > It is one of my wonder drugs also. I also > > take > > > > sinemet > > > > > too. Have you tried that? > > > > > > > > > > > > > > > --- amerikooch@... wrote: > > > > > > > > > > > -Hi Laurie, > > > > > > That is good news missed you on the chat > > take > > > > > > care. > > > > > > Hugs, > > > > > > Donna K-- Laurie Fitzgerald > > > > > > laurie.fitzgerald@...> wrote: > > > > > > > Hi > > > > > > > > > > > > > > My Baclofen was increased last Friday > > and I > > > > have > > > > > > not had a single > > > > > > > episode of dystonia. I'm still getting > > some > > > > minor > > > > > > cramping, but living > > > > > > > with that is easy. I've been able to > > start > > > > back on > > > > > > a few stretches and > > > > > > > will gradually increase them in hopes of > > > > getting > > > > > > back to my > > > > > > > pre-dystonia level. > > > > > > > > > > > > > > laurie > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, > > data > > > > and > > > > > > statements contained herein are not > > necessarily > > > > > > those of the list moderators. The author > > of > > > > this e > > > > > > mail is entirely responsible for its > > content. > > > > List > > > > > > members are reminded of their > > responsibility to > > > > > > evaluate the content of the postings and > > > > consult > > > > > > with their physicians regarding changes in > > > > their own > > > > > > treatment. > > > > > > > > > > > > > > Personal attacks are not permitted on > > the > > > > list and > > > > > > anyone who sends one is automatically > > moderated > > > > or > > > > > > removed depending on the severity of the > > > > attack. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 That's wonderful, Shelby. It's always great to hear good news on this board! Best, Shayna > > Hi all, > I must share our good news. Our 32 yr old daughter with a clinical > diagnosis of mitochondrial disease had been doing very poorly. She > went for 6 months without knowing who we were, did not speak, had > significant dementia and could do nothing for herself. On a lark her > neurologist tried her on Aricept and she improved some. He then added > Namenda to the cocktail and she has improved dramatically. She knows > who we are, carries on simple conversations and can feed herself. > Today she put a 25 piece puzzle together and was able to go riding and > out for a sorbet treat. We are overjoyed with the improvement. We > have no idea how long it will last but we plan to enjoy it while we > have it. Just had to share. > Shelby, 's mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Shelby, This is wonderful news!! I am so happy to hear that is enjoying life and was able to get out and have a sorbet. What amazing strides she is making, doing a puzzle, carrying on simple conversations, and most of all knowing who her Mom and Dad are. That is the best.!! I hope that she continues to improve with her new medications. God Bless you all Love and Hugs, Ann-Marie Good news Hi all, I must share our good news. Our 32 yr old daughter with a clinical diagnosis of mitochondrial disease had been doing very poorly. She went for 6 months without knowing who we were, did not speak, had significant dementia and could do nothing for herself. On a lark her neurologist tried her on Aricept and she improved some. He then added Namenda to the cocktail and she has improved dramatically. She knows who we are, carries on simple conversations and can feed herself. Today she put a 25 piece puzzle together and was able to go riding and out for a sorbet treat. We are overjoyed with the improvement. We have no idea how long it will last but we plan to enjoy it while we have it. Just had to share. Shelby, 's mom Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Thank you so much for sharing your WONDERFUL news!!! william hawthorne wrote: >Hi all, >I must share our good news. Our 32 yr old daughter with a clinical >diagnosis of mitochondrial disease had been doing very poorly. She >went for 6 months without knowing who we were, did not speak, had >significant dementia and could do nothing for herself. On a lark her >neurologist tried her on Aricept and she improved some. He then added >Namenda to the cocktail and she has improved dramatically. She knows >who we are, carries on simple conversations and can feed herself. >Today she put a 25 piece puzzle together and was able to go riding and >out for a sorbet treat. We are overjoyed with the improvement. We >have no idea how long it will last but we plan to enjoy it while we >have it. Just had to share. >Shelby, 's mom > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 , This is wonderful news to read here on Mitoldies. Thank you for sharing it and congratulations to all of you. I know how this has to feel. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Shelby That is wonderful news. You must be so excited. I really appreciate that you shared your good news about . You will all remain in my thoughts and prayers. Hugs, laurie > > Hi all, > I must share our good news. Our 32 yr old daughter with a clinical > diagnosis of mitochondrial disease had been doing very poorly. She > went for 6 months without knowing who we were, did not speak, had > significant dementia and could do nothing for herself. On a lark her > neurologist tried her on Aricept and she improved some. He then added > Namenda to the cocktail and she has improved dramatically. She knows > who we are, carries on simple conversations and can feed herself. > Today she put a 25 piece puzzle together and was able to go riding and > out for a sorbet treat. We are overjoyed with the improvement. We > have no idea how long it will last but we plan to enjoy it while we > have it. Just had to share. > Shelby, 's mom > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Shelby, This is wonderful, heartwarming news! I hope there will be more improvements for you to report in days to come. Hugs, Marie _____ From: [mailto: ] On Behalf Of william hawthorne Sent: Sunday, June 04, 2006 2:12 PM To: Subject: Good news Hi all, I must share our good news. Our 32 yr old daughter with a clinical diagnosis of mitochondrial disease had been doing very poorly. She went for 6 months without knowing who we were, did not speak, had significant dementia and could do nothing for herself. On a lark her neurologist tried her on Aricept and she improved some. He then added Namenda to the cocktail and she has improved dramatically. She knows who we are, carries on simple conversations and can feed herself. Today she put a 25 piece puzzle together and was able to go riding and out for a sorbet treat. We are overjoyed with the improvement. We have no idea how long it will last but we plan to enjoy it while we have it. Just had to share. Shelby, 's mom Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 This is terrific Shelby - will have to find out about these wonder meds and thanks for sharing with us all! Pamela From: [mailto: ] On Behalf Of william hawthorne Sent: Sunday, June 04, 2006 2:12 PM To: Subject: Good news Hi all, I must share our good news. Our 32 yr old daughter with a clinical diagnosis of mitochondrial disease had been doing very poorly. She went for 6 months without knowing who we were, did not speak, had significant dementia and could do nothing for herself. On a lark her neurologist tried her on Aricept and she improved some. He then added Namenda to the cocktail and she has improved dramatically. She knows who we are, carries on simple conversations and can feed herself. Today she put a 25 piece puzzle together and was able to go riding and out for a sorbet treat. We are overjoyed with the improvement. We have no idea how long it will last but we plan to enjoy it while we have it. Just had to share. Shelby, 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Thank God for good news now and then. And more glad that you shared it with us. I hope you stay on that white cloud with continued good news. I will continue to pray for everyone especially us mito gang, and hope that we all get some white cloud to float on now and then. Thanks again for sharing, and I'll keep my fingers crossed. --- william hawthorne whhawt@...> wrote: > Hi all, > I must share our good news. Our 32 yr old daughter > with a clinical > diagnosis of mitochondrial disease had been doing > very poorly. She > went for 6 months without knowing who we were, did > not speak, had > significant dementia and could do nothing for > herself. On a lark her > neurologist tried her on Aricept and she improved > some. He then added > Namenda to the cocktail and she has improved > dramatically. She knows > who we are, carries on simple conversations and can > feed herself. > Today she put a 25 piece puzzle together and was > able to go riding and > out for a sorbet treat. We are overjoyed with the > improvement. We > have no idea how long it will last but we plan to > enjoy it while we > have it. Just had to share. > Shelby, 's mom > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 \Shelby keep up the positive thinking for her. This is so neat to read that there is still hope! Thanks for sharing! O Mito mom to three Mito babies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 I just had a call from my attorney. My hearing has been set for May 2. That is such a load off my mind knowing that the end may be near. Kimber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hi Kimber, I had a very good disability attorney. My hearing date was all set for a certain day. My lawyer some how moved it up a few days and took care of all the paperwork and everything all by himself. I got approved without even going before anyone. I was so happy because I was so nervous. So good luck to you. I hope everything goes well. Debbie T.Co-Moderatorkimber31_1963 wrote: I just had a call from my attorney. My hearing has been set for May 2. That is such a load off my mind knowing that the end may be near.Kimber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Kimber, that's great (assuming that by "the end being near," you mean disability assistance!). Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: good newsDate: Thu, 22 Feb 2007 20:13:37 -0000 I just had a call from my attorney. My hearing has been set for May 2. That is such a load off my mind knowing that the end may be near.Kimber Win a Zune™—make MSN® your homepage for your chance to win! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Good. I am happy for you.. Some times it takes baby steps, but they forget to tell you it might hurt a little along the way.I will be praying for good things for you. Huggs I just had a call from my attorney. My hearing has been set for May 2. That is such a load off my mind knowing that the end may be near.Kimber Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
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