Help
Does any one know what to do when the doctors have no answers. My husband is only 63, we found out from the family dr that he has alzheimers about 3 yrs ago. We were referred to a neuro dr who placed him on Exelon patches that was working until he became upset with me in Nov of 2009. He got mad at me and tried to jump out of the car. Well he stayed in the car and got out at the next light to walk home. He fell walking and broke his knee cap, start of one hospital stay and a rebabilation stay at a rest home. With in the next several months 2 more hospital stays with the local drs thinking that he now has LBD too. His Neuro dr referred us to Duke Hospital for answers Will 9 months later no answers. Brain scans shows no damaged, drs do not want to prescribe no medical because they think the dizzyness is interaction of the medicine. SO NO MEDICINE FOR ALZHEIMERS OR LBD NOW. My husband stays dizzy, fall around in the house, sleeps from 11pm to 6 or 8 pm the next day, confused, talks about the same things several times a day, only care for the animals that are in the house, wants me under foot all the time when I have to work to pay the bills.HELP do I drag him for another diagnosis at some where else or just go on like this? I feel lost, confused, don't know where to turn. He says not to worry because there is no help for him. He knows something is wrong be he doesn't know what. He doesn't understand why he can not remember things.
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Help
Does any one know what to do when the doctors have no answers. My husband is only 63, we found out from the family dr that he has alzheimers about 3 yrs ago. We were referred to a neuro dr who placed him on Exelon patches that was working until he became upset with me in Nov of 2009. He got mad at me and tried to jump out of the car. Well he stayed in the car and got out at the next light to walk home. He fell walking and broke his knee cap, start of one hospital stay and a rebabilation stay at a rest home. With in the next several months 2 more hospital stays with the local drs thinking that he now has LBD too. His Neuro dr referred us to Duke Hospital for answers Will 9 months later no answers. Brain scans shows no damaged, drs do not want to prescribe no medical because they think the dizzyness is interaction of the medicine. SO NO MEDICINE FOR ALZHEIMERS OR LBD NOW. My husband stays dizzy, fall around in the house, sleeps from 11pm to 6 or 8 pm the next day, confused, talks about the same things several times a day, only care for the animals that are in the house, wants me under foot all the time when I have to work to pay the bills.HELP do I drag him for another diagnosis at some where else or just go on like this? I feel lost, confused, don't know where to turn. He says not to worry because there is no help for him. He knows something is wrong be he doesn't know what. He doesn't understand why he can not remember things.
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I can not belive this--Health nurse came from the insurance company today to review my husbands medicine. She asked some questions about his health situation. Well long story short, how does a rn not know what lbd is? I had to turn on my computer and pull up the site to let her review the situation. Health care HA HA
I can not belive this--Health nurse came from the insurance company today to review my husbands medicine. She asked some questions about his health situation. Well long story short, how does a rn not know what lbd is? I had to turn on my computer and pull up the site to let her review the situation. Health care HA HA
Hello there,
I am so sorry to hear about your husband and the struggle you've been through to get a diagnosis. My advice to you is to stay persistent in getting one. The changes in him are major. There IS something up. And if they tell you it's not Alzheimer's or LBD, then what is it? There are so many things that can cause cognitive impairment and the other sypmtoms he's experiencing. Insist that a doctor work through the list of possibilities to start ruling things out.
I know it's so frustrating when you feel like you have to educate the experts, so to speak, but don't give up! If you don't act as your husband's advocate, no one will.
hugs to you!
Missy
Hello there,
I am so sorry to hear about your husband and the struggle you've been through to get a diagnosis. My advice to you is to stay persistent in getting one. The changes in him are major. There IS something up. And if they tell you it's not Alzheimer's or LBD, then what is it? There are so many things that can cause cognitive impairment and the other sypmtoms he's experiencing. Insist that a doctor work through the list of possibilities to start ruling things out.
I know it's so frustrating when you feel like you have to educate the experts, so to speak, but don't give up! If you don't act as your husband's advocate, no one will.
hugs to you!
Missy
I would suggest you contact a local Alzheimers society just to maybe get an assessment from a qualified source. It can be frustrating when a loved one has quite unexplained symptoms and there is no firm diagnosis. Have you thought about getting second opinions with regards to his health sometimes you have to be pushy and assertive with doctors, you live with this person so you know him best. Keep a diary of what happens on a daily basis so when you visit the doctor this can give him more of an insight into what is wrong. Research on the web, find out as much as you can about the medication he is on and the possible side effects or the interactions of combined medications go to the doctors armed with KNOWLEDGE! don't let them dismiss your views. Find out if there are support groups near you which will help you in what is a very stressful time. I am not sure if you live in the UK otherwise I could perhaps help more. Hope this of some use to you Good Luck!
I would suggest you contact a local Alzheimers society just to maybe get an assessment from a qualified source. It can be frustrating when a loved one has quite unexplained symptoms and there is no firm diagnosis. Have you thought about getting second opinions with regards to his health sometimes you have to be pushy and assertive with doctors, you live with this person so you know him best. Keep a diary of what happens on a daily basis so when you visit the doctor this can give him more of an insight into what is wrong. Research on the web, find out as much as you can about the medication he is on and the possible side effects or the interactions of combined medications go to the doctors armed with KNOWLEDGE! don't let them dismiss your views. Find out if there are support groups near you which will help you in what is a very stressful time. I am not sure if you live in the UK otherwise I could perhaps help more. Hope this of some use to you Good Luck!
I just read something in my German information paper about research in the USA and I am all excited..
The University of South Fl , my Alma Mater, has just found some exciting information about a protein, called Microliacells that
seem to attack the plaque in the brain that can lead to AD. . and so to speak eat it up or kill it.
There is a machine translation of the report, which I received in German...below the ------------ line..I would call the University of Fl to see what exactly they found and get in on the research...if I lived in Fl still.
But it does sound a bit exciting. This protein GM -CSF is already available in a form of medicine that is now used for people suffering from Cancer...so it is available and the researchers are wanting to try it this year, (2010?? or early next year, not sure) on Alzheimer's patients. Oh, I pray that this is something that can help our loved ones, and that it is very quickly available.....especially for you younger folks in the early stages.
Scientists at the University of South Florida have found that rheumatoid arthritis patients have a reduced risk of Alzheimer's with. The reason for this is a cycle occurring in their blood protein.It seems that the ]Mi This protein is called "GM-CSF" and is in the body as a result of the inflammatory process in the joints are released. It called to speak the body's "garbage" on the plan, ie, special cells, the microglia are called to be active through this form of inflammation and plaques in the brain to the access, Alzheimer's disease can lead to one.
The good news is that the protein GM-CSF exists in at a cancer drug has proven form. Thus, the researchers this year attempts to Alzheimer's patients still lead. They hope that the performance of the brains of Alzheimer's patients can be improved by protein transfer.
I just read something in my German information paper about research in the USA and I am all excited..
The University of South Fl , my Alma Mater, has just found some exciting information about a protein, called Microliacells that
seem to attack the plaque in the brain that can lead to AD. . and so to speak eat it up or kill it.
There is a machine translation of the report, which I received in German...below the ------------ line..I would call the University of Fl to see what exactly they found and get in on the research...if I lived in Fl still.
But it does sound a bit exciting. This protein GM -CSF is already available in a form of medicine that is now used for people suffering from Cancer...so it is available and the researchers are wanting to try it this year, (2010?? or early next year, not sure) on Alzheimer's patients. Oh, I pray that this is something that can help our loved ones, and that it is very quickly available.....especially for you younger folks in the early stages.
Scientists at the University of South Florida have found that rheumatoid arthritis patients have a reduced risk of Alzheimer's with. The reason for this is a cycle occurring in their blood protein.It seems that the ]Mi This protein is called "GM-CSF" and is in the body as a result of the inflammatory process in the joints are released. It called to speak the body's "garbage" on the plan, ie, special cells, the microglia are called to be active through this form of inflammation and plaques in the brain to the access, Alzheimer's disease can lead to one.
The good news is that the protein GM-CSF exists in at a cancer drug has proven form. Thus, the researchers this year attempts to Alzheimer's patients still lead. They hope that the performance of the brains of Alzheimer's patients can be improved by protein transfer.
Maryland Gal sent me this info to share..re the above information.
Here are a few links for more info on that...
http://www.msnbc.msn.com/id/38956888/ http://www.sciencedaily.com/releases/2010/09/100901132144.htm http://insciences.org/article.php?article_id=9434 http://www.nytimes.com/2010/09/02/health/research/02alzheimer.html
There are more if you do a Google search on the words: cancer drug protein alzheimer
I send thanks to Maryland Gal for the above info..
Maryland Gal sent me this info to share..re the above information.
Here are a few links for more info on that...
http://www.msnbc.msn.com/id/38956888/ http://www.sciencedaily.com/releases/2010/09/100901132144.htm http://insciences.org/article.php?article_id=9434 http://www.nytimes.com/2010/09/02/health/research/02alzheimer.html
There are more if you do a Google search on the words: cancer drug protein alzheimer
I send thanks to Maryland Gal for the above info..
Thank you for all your advice. I have started a log with what happens each and everyday. I am on the internet trying to research and get all the information I can read and trying to understand what is going on in our life. I have been going to a support group for almost 3 years. When I first found the support group my husband went with me to them, that was what made him realize that he had a problem and that we need to find out what.
Thank you for all your advice. I have started a log with what happens each and everyday. I am on the internet trying to research and get all the information I can read and trying to understand what is going on in our life. I have been going to a support group for almost 3 years. When I first found the support group my husband went with me to them, that was what made him realize that he had a problem and that we need to find out what.
I would definitely take your husband to another specialist. Keep trying until you get a dr that understands and is competent. Keep on top of this doctor and be very involved with his care - ask questions and don't let the dr rush you - if he does, change drs!
The suggestion for the local Alzheimers Society was a good one, also = look for someone that is board certified in Neurology and specializes in treating Alzheimers.
It sounds like he is definitely depressed. Make sure the doctor knows this. This may be part of the reason he sleeps so much.
Don't forget to care for yourself. You need support -- look for a support group for Alzheimer Caregivers and Family members. This is extremely important bc you can't have the frustration of the situation affect his care!
Good Luck.
I would definitely take your husband to another specialist. Keep trying until you get a dr that understands and is competent. Keep on top of this doctor and be very involved with his care - ask questions and don't let the dr rush you - if he does, change drs!
The suggestion for the local Alzheimers Society was a good one, also = look for someone that is board certified in Neurology and specializes in treating Alzheimers.
It sounds like he is definitely depressed. Make sure the doctor knows this. This may be part of the reason he sleeps so much.
Don't forget to care for yourself. You need support -- look for a support group for Alzheimer Caregivers and Family members. This is extremely important bc you can't have the frustration of the situation affect his care!
Good Luck.
Thanks for all your help and advice. The only thing the doctors found at duke hospital was that his vitamin b12 levels was low.They want us to get vitamin b12 shorts every month and to see them in Febrauary for a 6 months check up.Yes i am involed in an alzheimer support group that meets once every month. When I first started going to the suppor meeting, he went with me, this is what made him realize that we had a problem. When he sleeps alot he usually says that he does not feel well.I can tell a different in his actions, memory etc when he does not feel well.
Thanks for all your help and advice. The only thing the doctors found at duke hospital was that his vitamin b12 levels was low.They want us to get vitamin b12 shorts every month and to see them in Febrauary for a 6 months check up.Yes i am involed in an alzheimer support group that meets once every month. When I first started going to the suppor meeting, he went with me, this is what made him realize that we had a problem. When he sleeps alot he usually says that he does not feel well.I can tell a different in his actions, memory etc when he does not feel well.
Crazywife, My husband was dizzy and sick and confused all the time he was on Excelon or Aricept. As soon as we took him off that he got better and wasn't confused, sick or dizzy. He still takes the Namenda and Seroquill to sleep. They had him on this medication for over a year and each time they increased the dosage, he would start really acting crazy. What medication is he on? My husband also gets B12 shots monthly. This doesn't give him any energy, in fact the doctor said its just that he needs the B12 and it works different on a dementia patient than it would work on you or I. They don't feel any energy from it i guess. My husband is tired all the time too.
Crazywife, My husband was dizzy and sick and confused all the time he was on Excelon or Aricept. As soon as we took him off that he got better and wasn't confused, sick or dizzy. He still takes the Namenda and Seroquill to sleep. They had him on this medication for over a year and each time they increased the dosage, he would start really acting crazy. What medication is he on? My husband also gets B12 shots monthly. This doesn't give him any energy, in fact the doctor said its just that he needs the B12 and it works different on a dementia patient than it would work on you or I. They don't feel any energy from it i guess. My husband is tired all the time too.
My husband was on Exelon patches of almost 3 years without any side effects. In November he fell, breaking his knee cap, and facturing his hand. Starting in January he started seeing double, dizzy, blood pressure dropping, seeing people that has already passed on, in general alot of the signs of lewery body dementia signs. Doctors localy said lewy body and sent us to Duke hospital, He is currently off all medicine for altimzers or dementia and is still having signs of lewery body.
My husband was on Exelon patches of almost 3 years without any side effects. In November he fell, breaking his knee cap, and facturing his hand. Starting in January he started seeing double, dizzy, blood pressure dropping, seeing people that has already passed on, in general alot of the signs of lewery body dementia signs. Doctors localy said lewy body and sent us to Duke hospital, He is currently off all medicine for altimzers or dementia and is still having signs of lewery body.
I haven't been keeping up with this forum lately and I miss it, but I had been concerned about my son. He was having some problems that appear with lung cancer and I was a bit worried....with grounds it seems. My little story is pasted below.
I am sorry that I have not posted lately. My heart has stayed with you all though.. My son Kenny, 51, had lung cancer. We had prayed that a clot would break lose and hit his heart so that the awful last stage of the lung cancer could be avoided/
Well, we got our wish. One did break lose, but it went to his brain and he had a stroke. Could not speak so well and was frustrated that he could not say what he wanted, but it did start improving. He was able to say that he did not want to live that way, that he knew it was his time and that he was ready to go. I spoke to him on the phone from here, Germany, and he knew it. The next day he had a really massive stroke, and needed a breathing tube , which did allow me to speak to him again....then since his lungs were filled with a lot of clots, the Dr. said he had no chance to live if he were not on the ventilator. So, we removed the ventilator...as he would have wanted. He died peacefully a few minutes later. I will travel to Fl now for his funeral. Life is hard....I am hoping that the nurse who will come twice a day to give hubby his medicine, and the man who will come every day to deliver dinner, and a friend who can come for a few minutes each day, will be enough to keep him OK while I am gone. He is not quite to second stage....but please send good wishes our way.
I haven't been keeping up with this forum lately and I miss it, but I had been concerned about my son. He was having some problems that appear with lung cancer and I was a bit worried....with grounds it seems. My little story is pasted below.
I am sorry that I have not posted lately. My heart has stayed with you all though.. My son Kenny, 51, had lung cancer. We had prayed that a clot would break lose and hit his heart so that the awful last stage of the lung cancer could be avoided/
Well, we got our wish. One did break lose, but it went to his brain and he had a stroke. Could not speak so well and was frustrated that he could not say what he wanted, but it did start improving. He was able to say that he did not want to live that way, that he knew it was his time and that he was ready to go. I spoke to him on the phone from here, Germany, and he knew it. The next day he had a really massive stroke, and needed a breathing tube , which did allow me to speak to him again....then since his lungs were filled with a lot of clots, the Dr. said he had no chance to live if he were not on the ventilator. So, we removed the ventilator...as he would have wanted. He died peacefully a few minutes later. I will travel to Fl now for his funeral. Life is hard....I am hoping that the nurse who will come twice a day to give hubby his medicine, and the man who will come every day to deliver dinner, and a friend who can come for a few minutes each day, will be enough to keep him OK while I am gone. He is not quite to second stage....but please send good wishes our way.
Thinking of you in your time of lost.
Thinking of you in your time of lost.
Thank you much Crazywife....Life is hard, but we all go through it , one way or another... I also love your "name! "
Thank you much Crazywife....Life is hard, but we all go through it , one way or another... I also love your "name! "
Finaly, got my husband's family doctor to listen and to read the journal I have been keeping for the last month. He agreeded something is wrong. He found out what when he stands up from laying down his blood pressure is dropping realy low. He is scheduling a sleep study, s mult-function table test, and an ecocaragram for him to try to find answers. Also is getting him a plush walker with a seat. Boy what a relief, I hope this works. Wish us luck!!!! Thanks for being my sounding board.
Finaly, got my husband's family doctor to listen and to read the journal I have been keeping for the last month. He agreeded something is wrong. He found out what when he stands up from laying down his blood pressure is dropping realy low. He is scheduling a sleep study, s mult-function table test, and an ecocaragram for him to try to find answers. Also is getting him a plush walker with a seat. Boy what a relief, I hope this works. Wish us luck!!!! Thanks for being my sounding board.
Have not been postig on the blog lately, lots of things going on in our life. We have had many many test done in the last 5 months. Ecograms, tilt table test, ccta scan on the heart, ect. Finaly meet with Dr. Cuoco from MUSC in Charleston, SC, he is a cardiology with internal medicine/ clinial cardiac electrophysiology. Finally a answer within 1st visit. My husband's heart has an complete heart blockage, which is where the top of the heart is not communicationing with the bottom, no electrical information is being pocessed. Surgery wa scheduled the next Tuesday. New icd inplanted. So fair so good, lots of bumps and bruises to let thru lots of pain that is questionable. We have been back to the weekly clinic every week since for check ups. When we get comfortable with this new pacemaker we will restart pushing to find out what type of dementia my husband has. Some people close to me has adressed it as vascular dementia now since the new heart problems has showed up. BEST ADVICE I CAN GIVE TO THOSE THAT ARE CAREGIVERS IS TRUST YOUR HEART, YOU KNOW YOUR LOVE ONE BETTER THEN ANY ONE ELSE. KEEP PUSHING UNTIL YOU GET THAT ANSWER THAY YOU NEED. Thank you for listening and for any advice you have given, for your prays and thoughts you give us all.
Have not been postig on the blog lately, lots of things going on in our life. We have had many many test done in the last 5 months. Ecograms, tilt table test, ccta scan on the heart, ect. Finaly meet with Dr. Cuoco from MUSC in Charleston, SC, he is a cardiology with internal medicine/ clinial cardiac electrophysiology. Finally a answer within 1st visit. My husband's heart has an complete heart blockage, which is where the top of the heart is not communicationing with the bottom, no electrical information is being pocessed. Surgery wa scheduled the next Tuesday. New icd inplanted. So fair so good, lots of bumps and bruises to let thru lots of pain that is questionable. We have been back to the weekly clinic every week since for check ups. When we get comfortable with this new pacemaker we will restart pushing to find out what type of dementia my husband has. Some people close to me has adressed it as vascular dementia now since the new heart problems has showed up. BEST ADVICE I CAN GIVE TO THOSE THAT ARE CAREGIVERS IS TRUST YOUR HEART, YOU KNOW YOUR LOVE ONE BETTER THEN ANY ONE ELSE. KEEP PUSHING UNTIL YOU GET THAT ANSWER THAY YOU NEED. Thank you for listening and for any advice you have given, for your prays and thoughts you give us all.
Glad to hear you are getting somewhere at last with your husbands diagnosis. My mother had vascular dementia and it was a fine balancing act with monitoring her blood pressure and thinning her blood to prevent clots.It is caused by the blood vessels to the brain reducing in size so the flow was reduced and this caused her to collapse when she stood up. She suffered high blood pressure and also AF (arteriol fibrilation) which is an irregular heartbeat. She needed tablets to control the AF,tablets for High blood pressure and digoxin and clopidogrel for the blood. It took a while to get the right dosage as one medication conflicts with the other, but we got there eventually! I suggest a book called 'contented dementia' (strange title I know) but it has lots of useful ways of dealing with the very frustrating (especially for the sufferer) symptoms of dementia. Also get onto the Alzheimers society web site and look up the SPECAL method in caring for dementia patients which has been recognised by the British Medical Assoc. Hope this is helpful to you, my thoughts are with you Best wishes
Glad to hear you are getting somewhere at last with your husbands diagnosis. My mother had vascular dementia and it was a fine balancing act with monitoring her blood pressure and thinning her blood to prevent clots.It is caused by the blood vessels to the brain reducing in size so the flow was reduced and this caused her to collapse when she stood up. She suffered high blood pressure and also AF (arteriol fibrilation) which is an irregular heartbeat. She needed tablets to control the AF,tablets for High blood pressure and digoxin and clopidogrel for the blood. It took a while to get the right dosage as one medication conflicts with the other, but we got there eventually! I suggest a book called 'contented dementia' (strange title I know) but it has lots of useful ways of dealing with the very frustrating (especially for the sufferer) symptoms of dementia. Also get onto the Alzheimers society web site and look up the SPECAL method in caring for dementia patients which has been recognised by the British Medical Assoc. Hope this is helpful to you, my thoughts are with you Best wishes