Hello to my extended forum family. It has been a long time since I've been able to post, or even read a post...

Is there no one else around with a spouse who has EOAD??? I don't wish this dreadful disease on anyone, but sure would like to hear from folks who have a LO in the early to mid EOAD.

It is really difficult to get through some days even in the early stages....especially when you know what is to come!! At times I think I'm the one who's losing my marbles and am not sure if the personality changes I sense in my husband are realy or is it my imagination?

Maybe someone out there is in the same stinking boat as I am and would be willing to share some insight and/or frustrations .

"Friends are angels who help us to our feet when our wings forget how to fly."

Gwen

Hi Gypsy,

Yes we did go to Mexico the week after Thanksgiving. Everything was good until the day before we got ready to come home. I don't know what happened but my wife got very emotional and she also became angry and afraid of me. For whatever reason she thought I was doing something illegal and was going to be arrested. She said I was "scamming" people and she knew what I was doing. I had a real difficult time getting her home. She kept saying she wanted to go home and when I told her that we needed to wait for the plane she would be appeased for a few minutes and then she would start in again about how I was scamming people and she wanted to go home. It was difficult to get her to walk down the corridor to get on the plane and then she wouldn't sit in the seat she was suppose to. She would just sit down wherever she wanted and then I had to fight with her to move.

She was angry with me for several weeks after. Then my son was finally able to convince her that she probably had seen something on TV and thought it was real. No matter what I tried she wouldn't let it go but when he said it then all was ok. She's been in a pretty good mood since.

Overall the trip was good. We couldn't do a lot but we did manage to go on a couple tours. We were in Acapulco so one of the tours was to see the cliff divers and to the Chappel on the hill and the "Flea Market" for shopping. Most the time we just hung out at the resort. We toured the resort several times and we watched a lot of TV in our room. I got in the ocean a couple times and rode a tube in the "lazy river" one day. There were a lot of stairs getting down to the beach so my wife only went down with me once. The other times I left her in a chair by the pool where she could still see me. She won't go in the water because she can't see the bottom. She can't see the steps under the water and she doesn't trust me to help her down the steps getting in. If she can't see the step she won't go.

It would be nice if I could find a travel companion so I could do more and let the companion look after my wife part time while I play golf or play in the ocean. I'll keep trying.

Got a couple short trips planned but nothing out of the country for awhile. Hope you have a good time on your trip.

Billy G

Welcome back, Billy G. I think the last time you posted you were getting ready to go to Mexico. How was your trip? I am sorry you didn't get better news at the Mayo Clinic but am glad she is getting the new med. Hopefully they will discover new treatments soon. Any more trips in the works? We are planning to go to Victoria for Thurs. to Tues. of the Easter weekend. We made a trip down in Dec. and will stay at our favourite hotel. Gypsy

BillyG, I wish your news from the clinic had been more positive.I am so sorry. For your wife to feel more positive is good.She needs something to hold on to.It is not easy to look to the future wit her having EOAD, but you have many days to enjoy.We take each day as it comes and hope tomorrow is as good or better.I hope she experiences all the good that can come from the medicine.So many have had such positive results and gives them moments they felt were lost. Thank you for sharing and welcome back

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

Hi group,

I've been away quit awhile and haven't kept up with all the discussions. However, I would like to share some recent events regarding my wife. She was diagnosed about three years ago with "Early Onset" and she is only 54 years old.

We just returned from the Mayo Clinic in Scottsdale, AZ. Unfortunately, we didn't get good news. It was a very pleasant experience and I would fully reccommend the clinic to anyone that might be considering that option. The main outcome was that she was prescribed the new drug Namenda which I have heard good things about. We'll have to wait and see how that works.

There was a small shred of hope when the lab tests showed that she had a high liver enzyme count, i.e, high copper content in her blood. The doctors thought she could have Wilson's Disease or copper poisoning, which is stoppable with medication and diet change. However, her urine test and liver sonogram did not specifically support that finding. Her liver is not damaged and her urine was clean. They still don't have an explaination for the high content in her blood.

Just the visit to the clinic made my wife have a new attitude. She tells everyone she is doing better and that makes our relationship a little better.

quote:

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Originally posted by Judy:
Just a note to say I think we're working on trying to get another medical test which may help. Does an MRI give more information than a CAT scan? My husband has had two CAT(CT)scans and both were "NORMAL"..Its been nearly three years since the first one..Interestingly he went to a local clinic for a painful bump on his back, his blood pressure was noted as 180/108..Doctor didn't notice bp.but later left a message at home..about reviewing the record of husband's visit and noticed bp..duhh..so I called husbands primary dr. and mentioned the current events with memory..We used bp as method of getting him in for his regular checkup anyway..and dr. addressed the memory issues and suggested a MRI. Husband agreed. We're on. Hope it helps.
Just wanted to let you know.

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This is great news, Judy...
Strange how things seem to come to pass just when we need them!

To answer your question, CT scans are typically used to rule out the presence of a mass or tumor while MRIs are used to rule out the untoward effects of stroke. Unfortunately, the result of those small and transient strokes don't often show up on MRIs after a few days. What you might want to push for is a SPECT scan which will show what areas of the brain are no longer working at their primary levels of function.

Because many folks with exceptional intelligence and/or abilities are able to compensate during the standard MiniMental testing and psychological batteries used to screen AD patients, this type of radiological testing may be necessary. The last time I researched it, SPECT scans had a 98% accuracy rate in the diagnostic path for AD determination.

Good luck to you and your husband. Please keep us posted.
Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Welcome back, Chris...

Setting up trusts and protecting assets are only two of the specialties offered by elder law attorneys. Sonia is offering you excellent advice here and there is no time like the present to get busy with that critical paperwork.

And, if you haven't done so yet, please allow me to encourage you to also develop your Durable Powers of Attorney for both medical and financial management as well as determining the Advance Directives aka Living Will.

By doing so now, you will be able to involve your husband in the development of his future planning and minimize the stresses later if these issues are left unresolved.

As always, wishing both of you the best...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Judy, hello, I wish my mothe had received a cat scan.We may have learned so much.She was in , what is suppose, to be a great AD hospital unit, in Phila.They chased me down to get me to sign for one , but never had one.She returned to me worse than when she went in.I fired her doctor and told the social worker not to come close to my home.They tale me into taking her there to get answers.I got answers all right.I knew more than they did and they were not pleased that I was not afraid to say so.She had cat scans that revealed nothing until the end.They did one to her stomach and showed very small kidney stones.I had her in a local hospital that was affiliated with this very hospital.The first words were this hospital,Jefferson of Phila, was top notch in AD.I asked him where he got such information.I told him I had experienced there treatment and found it to lack any substance.If I had it to do over I would have sued them for admitting her under false pretense.I do not believe mother had AD but a form of dementia.I am beginning to believe this area is not well adversed in this area.The first word out of their mouths is are you placing her.They have no idea how close I come to smacking them.The Jefferson unit was the worst I have ever seen.I never found out why they never did the MRI.I understand they are beginning to use the MRI instead of doing a colonoscopy.Less invasive, all done within a few hours.But they do no surgey if a pallup is found.So we never did have answers that would have benefited us.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

Just a note to say I think we're working on trying to get another medical test which may help. Does an MRI give more information than a CAT scan? My husband has had two CAT(CT)scans and both were "NORMAL"..Its been nearly three years since the first one..Interestingly he went to a local clinic for a painful bump on his back, his blood pressure was noted as 180/108..Doctor didn't notice bp.but later left a message at home..about reviewing the record of husband's visit and noticed bp..duhh..so I called husbands primary dr. and mentioned the current events with memory..We used bp as method of getting him in for his regular checkup anyway..and dr. addressed the memory issues and suggested a MRI. Husband agreed. We're on. Hope it helps.
Just wanted to let you know.

Chris,
This is a legal jungle that can't be addressed here by persons unfamiliar with your legal needs. You need the services of an ElderLaw Attorney. Ask around for recommendations, or click on the link below to help you find one in your area.

http://www.naela.com/Applications/ConsumerDirectory/index.cfm

Hi all,

Just a note to get some conversation going here about asset preservation. Are any of you familiar with setting up a trust or anything to preserve your assets in case your LO has to go to a nursing home? I'm on that journey, and it's overwhelming. Any input?

Thanks, Chris

GWEN? Where are you? Please take a moment and let us know how you are.

Gwen... Where are you? We miss you. Please come back to us... ...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Hello Chris...

No problem about the switch in names, especially since it did give me the opportunity to share how Alan stopped driving with minimal rancor. Hopefully, it will assist someone else facing the same dilemma.

Fine lines and semantics. Oh yes, we all know about those, don't we? But before I answer your specific question I would like to reiterate not all stages of Alzheimer's Disease are synonymous with dementia. The earlier AD and related diseases are detected and appropriately treated, the longer a person may have before the actual onset of this debilitating level. It is worth noting accurate use of semantics to describe this disease is critical when teaming with the effected, the medical community, and legal/financial entities.

To answer your question, the person I mentioned who is benefiting from a cranial shunt and Aricept does suffer from both NPH and early stages of AD. That is not to say your husband's diagnosis will be the same but further testing may help both of you, even if it simply results in peace of mind. With that said, please be aware it is not uncommon for neuro-degenerative comorbidity to exist, e.g. Parkinson's and Alzheimer's Disease or Multiple Sclerosis and Alzheimer's Disease.

Godspeed to you and your husband.
Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Hey Joan Marie,

Just a note to follow up on the responses to my posting of yesterday. I'm sorry that I got the names goofed up. Apparently I was having a "senior moment", too, huh?

A question about the person with NPH but taking Aricept for dementia. Was that person actually diagnosed with Alzheimer's, or were you simply saying that the symptoms were the same so they were treating it as such? (Yes, a very fine line, I know).

Thank you to all of you for your support and insight.

Love, Chris

The gentleman in Texas that killed and injured so many is going to be tried on vechicle homicide. I am almost betting his defense will be he has Alz. What his family may or may not realize is they also can be sued if he has Alz. because they did not take away the keys. When we had Milly diagnosed stated with her diagnoses was that she should not drive. Allowing her to drive after a diagnoses could have been viewed as allowing someone who drank at your house to drive after that person was too drunk to drive.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

Dear Judy...
RUN, DO NOT WALK, TO ANOTHER DOCTOR!

Please gather yourself, pull together your detailed notes, grab those records, ALL of those records, and head to a new neurologist...hopefully one that specializes in proactive recognition and treatment of Early Stage AD. MCI has a proven 80% turnover rate to classic AD and there IS treatment available.

My heart, and many others here, go out to you. Don't stop! Begin again...we're with you.

Sincerely...
Joan Marie

I'm here. Thank you for your helpful comments. I appreciate you all for listening and am so thankful for this place. I understand fully the concerns you've shared and feel those and more every day. We've had the tests (blood,CAT,psychiatric,etc)..His doctor encouraged him to run for office.. Gave him a clean bill of health. The psychiatrist told him he had MCI and he could keep a notebook. Make lists, write things down, etc. I feel the doctor was in denial and that I couldn't get him to understand how important it was for us to get help. I was wanting help, my husband finally refused to go to another appointment or have another test. That is a familiar story to many of you maybe.
Again thank you for being here. You bring comfort to so many.
Sincerely
Judy

quote:

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Originally posted by Chris: ... To be honest, we still don't have a diagnosis other than normal pressure hydrocephalus, but my gut tells me that we're dealing with more than NPH. But, I'm working hard at acceptance without diagnosis, as having an actual diagnosis doesn't alter the symptoms that you need to manage each day. ...

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Hello again, Chris...

Your position is understood, especially since your husband is using a cranial shunt and you don't have the benefit of an additional or supplementary diagnosis. However, one of the people who was in my husband's support group for early stage AD also is diagnosed with NPH yet suffers with the same symptoms you mentioned earlier. In addition to the cranial shunt, this woman also uses Aricept (a cholinesterase inhibitor) to offset some of those same symptoms. My purpose for sharing this with you is that perhaps you really should heed that "gut feeling" and pursue additional diagnosis. If nothing else, it will give you peace of mind should the results be negative. If the results prove true, then additional treatment is available to improve the quality of your husband's life as well as your own.

Chris, you do have a wonderful attitude regarding your spousal caregiving challenge. Don't stop! And please don't ever forget to make time and take time for yourself during the caregiving process.

By the way, my name is Joan Marie and it isn't my husband who had the problem with giving up driving. We chose a weaning approach. First, he never drove alone and then we cut off his driving at noon. After that, it was his option to drive to some place and if there was a problem, I drove back. Eventually, he gave up the keys. I will say this process was enhanced by a rear-end collision that totaled our car while we were at a full stop. That driver was admittedly "distracted" and, gratefully, Alan never did forget it.

Warmest regards to you and your husband.

"Dream as though you will live forever. Love as though you will die tomorrow."

Chris, I never got a diagnosis for my mother and I had her in a hospital that was supposed to be top rated.You said it so right.We are dealing with the symptoms which can mimic other forms of dementia, etc. You are so right when you say we do the best we can.That is all we can ask of our selves.We must never compare our style and abilities with anothers.It is so difficult to be thrust into the position of doing everything when you once shared things with your spouse.THERE IS NOT ANOUGH OF YOU TO GO AROUND OR THE ENERGY LEVEL CAN NEVER BE THE SAME AS THOUGH THERE WERE TWO.I hope you are able to get the respite care.Every little bit helps.I am just beginning the process and they want to get me someone to come in so I can have time to be away for a few hours.Sounds like you are going to get the relief that you deserve.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.