Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 Can you imagine if a person with LBD all by him or herself had to navigate the insurance system?! Incredible. Good luck today, and keep us posted. Regards, Helene in NY > > thanks linda, pat, kate(kathy) and others for the financial advice. i printed them out for when i contact an elderlaw attorney. in the mean time, we go see kay's (LBD-probable) treating dr. tomorrow- a neuropsychiatrist. have some questions for him. a neurologist we saw mentioned wanting to do a lumbar puncture. i am not in favor of that at this time. what would he be looking for? and would it be curable anyway? Kay's back is already in bad shape and a puncture is not a piece of cake. i will however finally approve the 2-4 hr neuropsych test. it will be tiring for kay. my insurance wouldn't approve of the neurologist's referral because they said it would be a conflict of interest because he also runs the testing facility. Go figure. i think i can get the referral from the psychiatrist. anyway, you all have the best Christmas you can. i will continue to read and check back in after the New Year..................gary > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 , Does Kay have tremors or neuropathy? I haven't heard of a lumbar puncture done for LBD until recently, and I'm still not sure why. But if there are other neurological conditions present, that might be the reason for the puncture. Maybe ask the neuro a lot of questions and ask him to explain this recommendation? If it hasn't started, try to get Kay to not think of this as a test. Think of it more as a survey to find out where she needs help and what can be offered to her. She needs to be as calm as possible before the survey begins. I had the same survey because of some memory scares combined with ever worsening tremors and it isn't so bad. Long, but not bad. And the " tester " is usually someone who is very attune to the needs of the person being surveyed. Kay should not try to hide difficulties or frustrations. These will be important in the diagnosis. It isn't a test you want an " A " on. It's a survey to find out as much as possible about Kay and see what her (and your) options are. It all sounds grueling, but it really isn't if you look at it as something other than a " test. " I'd say good luck, but that sounds too much like hoping for an " A " on a " test. " So, instead, I'll say to you and Kay that I hope you end up with a diagnosis and recommendations you can work with. Kathy On Tue, Dec 13, 2011 at 8:53 PM, gary.s.dale@... < gary.s.dale@...> wrote: > ** > > > thanks linda, pat, kate(kathy) and others for the financial advice. i > printed them out for when i contact an elderlaw attorney. in the mean time, > we go see kay's (LBD-probable) treating dr. tomorrow- a neuropsychiatrist. > have some questions for him. a neurologist we saw mentioned wanting to do a > lumbar puncture. i am not in favor of that at this time. what would he be > looking for? and would it be curable anyway? Kay's back is already in bad > shape and a puncture is not a piece of cake. i will however finally approve > the 2-4 hr neuropsych test. it will be tiring for kay. my insurance > wouldn't approve of the neurologist's referral because they said it would > be a conflict of interest because he also runs the testing facility. Go > figure. i think i can get the referral from the psychiatrist. anyway, you > all have the best Christmas you can. i will continue to read and check back > in after the New Year..................gary > > > -- Kate Knapp, OIT University of Minnesota " We ask ourselves, 'Who am I to be brilliant, gorgeous, talented and fabulous?' Actually, who are you not to be? Playing small does not serve the world. " - Mandela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 I asked once, at Mom's SNF, about what happens with all the forms if the patient doesn't have someone of their own to handle them. The unit social worker told me that those cases are rare, but when it happens it is up to her to get the basic required paperwork in. She works closely with the county and they seem to be able to accept whatever she can submit for those patients and forgive the rest. She sends in just enough to be sure Medicaid and insurance covers the costs. What I've wondered about is how a spouse in his/her eighties and nineties (often with his/her own ailments) handles caregiving. In my mind, those caregivers are nothing less than heroes. To handle the financial and medical issues, if at home much of the direct care and if at a nursing home the frequent and every night visits to a spouse that is often unpleasant would, I think, be a monumental effort for someone 10 or 20 years younger! I can't even imagine the strength these caregivers show. I'm hoping some of it rubs off on me. Kathy > ** > > > > > Can you imagine if a person with LBD all by him or herself had to navigate > the insurance system?! Incredible. > > Good luck today, and keep us posted. > > Regards, > Helene in NY > > > > > > > > thanks linda, pat, kate(kathy) and others for the financial advice. i > printed them out for when i contact an elderlaw attorney. in the mean time, > we go see kay's (LBD-probable) treating dr. tomorrow- a neuropsychiatrist. > have some questions for him. a neurologist we saw mentioned wanting to do a > lumbar puncture. i am not in favor of that at this time. what would he be > looking for? and would it be curable anyway? Kay's back is already in bad > shape and a puncture is not a piece of cake. i will however finally approve > the 2-4 hr neuropsych test. it will be tiring for kay. my insurance > wouldn't approve of the neurologist's referral because they said it would > be a conflict of interest because he also runs the testing facility. Go > figure. i think i can get the referral from the psychiatrist. anyway, you > all have the best Christmas you can. i will continue to read and check back > in after the New Year..................gary > > > > > -- Kate Knapp, OIT University of Minnesota " We ask ourselves, 'Who am I to be brilliant, gorgeous, talented and fabulous?' Actually, who are you not to be? Playing small does not serve the world. " - Mandela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2011 Report Share Posted December 14, 2011 My dad's neurologist wanted to do a lumbar puncture on my dad. I can't remember if it was to rule out some diseases or to help to diagnose LBD. Either way, LBD was suspected and the lumbar puncture was going to be part of the testing. I opted out of that for my dad. He really did not like needles so I didn't want to put him through that. He was tested for heavy metals, lead, Huntington's...just to name a few, as a process of elimination. My dad was diagnosed with LBD at the age of 58, in 1995, and passed away Sept. 2002. We live in Des Moines, IA and I have to say the team of neurologists at Mercy Ruan Neurology Clinic are very knowledgable on all sorts of neurological diseases. SandieDes Moines, IAdad, Merle, passed from LBD 9-20-02, age 65 ----- Re: possible more tests Date: Wed, 14 Dec 2011 09:13:16 -0600 , Does Kay have tremors or neuropathy? I haven't heard of a lumbar puncture done for LBD until recently, and I'm still not sure why. But if there are other neurological conditions present, that might be the reason for the puncture. Maybe ask the neuro a lot of questions and ask him to explain this recommendation? If it hasn't started, try to get Kay to not think of this as a test. Think of it more as a survey to find out where she needs help and what can be offered to her. She needs to be as calm as possible before the survey begins. I had the same survey because of some memory scares combined with ever worsening tremors and it isn't so bad. Long, but not bad. And the " tester " is usually someone who is very attune to the needs of the person being surveyed. Kay should not try to hide difficulties or frustrations. These will be important in the diagnosis. It isn't a test you want an " A " on. It's a survey to find out as much as possible about Kay and see what her (and your) options are. It all sounds grueling, but it really isn't if you look at it as something other than a " test. " I'd say good luck, but that sounds too much like hoping for an " A " on a " test. " So, instead, I'll say to you and Kay that I hope you end up with a diagnosis and recommendations you can work with. Kathy On Tue, Dec 13, 2011 at 8:53 PM, gary.s.dale@... < gary.s.dale@...> wrote: > ** > > > thanks linda, pat, kate(kathy) and others for the financial advice. i > printed them out for when i contact an elderlaw attorney. in the mean time, > we go see kay's (LBD-probable) treating dr. tomorrow- a neuropsychiatrist. > have some questions for him. a neurologist we saw mentioned wanting to do a > lumbar puncture. i am not in favor of that at this time. what would he be > looking for? and would it be curable anyway? Kay's back is already in bad > shape and a puncture is not a piece of cake. i will however finally approve > the 2-4 hr neuropsych test. it will be tiring for kay. my insurance > wouldn't approve of the neurologist's referral because they said it would > be a conflict of interest because he also runs the testing facility. Go > figure. i think i can get the referral from the psychiatrist. anyway, you > all have the best Christmas you can. i will continue to read and check back > in after the New Year..................gary > > > -- Kate Knapp, OIT University of Minnesota " We ask ourselves, 'Who am I to be brilliant, gorgeous, talented and fabulous?' Actually, who are you not to be? Playing small does not serve the world. " - Mandela Quote Link to comment Share on other sites More sharing options...
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