I'm wondering if I can find a better way to handle this. Every time there is a new sense of decline, even a slight one like just feeling like Hu is fading farther from me, it seems like a 3-year-old wound is ripped open.

Has anyone found a way to think of this, prepare for it, deal with it, so that it doesn't feel like such fresh pain every time? I'm trying to think of a tolerable analogy but I can only think of awful things. I've found imagining how I want to feel a help in dealing with difficulties, but I'm having a hard time coming up with a picture for this one.

Hu is sick, possibly with strep throat. He was supposed to fly to an uncle's funeral this morning but couldn't go because he still has a fever even though we've started antibiotics. He is feeling awful and disappointed but is easily comforted, thank goodness. It's nice to get a chance to baby him since memantine has made him more independent, ha!

He skiied two days with the grandchildren last week. He said now that he's 60 he doesn't want to ski with the men. One of the grandkids noticed he doesn't make good decisions about how he skis in relationship to other skiers, something we had not thought about. We think maybe this will be his last winter to ski, but he wants to buy better and safer skis, oh dear!

I find it helpful to imagine how much time Hu may have rather than just feeling the unknown open-endedness. Right now I think of it as 5-10 years, and that's easier for me to live than the unknown, even though I know it's only a guess. I can always revise my guess. How do you think about it? Hope to hear from others with spouses with EOAD. -Mary Morken

Jim , Has said it so well.You have to be prepared for sudden changes and accept them for what they are.Sometimes there are answers for the changes, medicine, orher times it could be something physical, and thetre are times when it is just the disease.If you are use to consistency, be prepared to let they go.

Hi Chris,

Your husband may not fit into an neat little cubby hole with symptoms all the time. Soimetimes the symptoms change from day to day and may be indicative of other dementia causes too.

I think many CGs have trouble with the day at a time living--I know I did until I finally realized that it just may be a blessing that I don't have to figure out tomorrow until it gets here.

And as far as consistancy with these diseases--you can usually count on the fact that there will be changes--sometimes constant changes from day to day or during the day too. With us, the change is our only constant.



...

CAOlson,
This is so difficult. As MaryMorken said, it seems like a wound has been opened each time something new is forgotten and like a gift each time something is remembered.

Reinachan

Reinachan,

Welcome to the forum! I have been involved with this forum for the past few months and find it to be so helpful. I especially enjoy the fact that the forum is divided into many topics which encourages people to discuss the many facets involved with any diagnosis.

My husband (age 59) was diagnosed with frontotemporal dementia at the Mayo Clinic in March. Up until that point I questioned his many symptoms trying to find a profile on the computer that matched his many and varied symptoms. Although FTD is different than AD, the journey is quite similar. Roger began exhibiting symptoms as long ago as 1999, and it was such a frustration trying to figure it all out. I, too, was the type of person that liked to everything planned out for our lives, so it's been an adjustment for me to learn to live in the now. But, living in the "now" isn't all bad, it's just something new.

I feel that I've come a long way in the acceptance of Roger's illness. I've moved from living in denial to accepting the illness for what it is and doing my best to balance my husband's needs as well as my own. I must say that the friends that I've found on this forum have helped me hugely in my acceptance of my husband's illness and with my need to address my own needs and the needs of our children.

Please write again as we're all here to help each other the best that we can.

Hugs, Chris

From your message, I am guessing that we are in the same boat. My husband is also 60 and although he has not been diagnosed with Alzheimer's, I am very fearful that is what is wrong. I am working very hard to enjoy one day at a time and not look ahead. In my life, I have ruined many of my todays by worrying about my tomorrows. I do not want to do it this time. I want to enjoy the days we have. It is very difficult.

Chris/Judy

From one that has been there, I strongly reccommend following through with the Mayo appointments if there is any doubt in your mind about going. My wife is 54 and has been diagnosed with early onset. She has deteriorated drastically over the last four years. She went from self sufficient to fulltime care. We just returned from the Mayo Clinic in Scottsdale, AZ and it was a very very pleasant experience. Unfortunately, the outcome was not any different than what had already been determined but, at least I do feel they were extremely thorough and I have done all that is possible for my wife. They did find some abnormalities that the doctors here overlooked. Her copper content was more than twice normal which, they felt could indicate Wilson's Disease (copper poisoning). However, her liver and urine were clear so they ruled out Wilson's but, still can't explain the high copper content. Also, there were some abnormalities in her EKG which the neurologist said could be the sign of oncoming seizures. He therefore prescribed a drug to prevent that from happening. Again the doctors here didn't recognize any of this. So, if you have exhausted your resources where you live and feel you need to do more then by all means get the appointments. They will give you a complete printout of all the tests results and all the comments from the doctors exams.

I have provided copies of this report to my wife's primary care physician here for follow-up medical care. Also a couple of the doctors at the clinic have contacted her doctor here with specific directions for her care. I am still expecting a final report with a summary of the doctors findings and a plan for further care.

Good luck! The care doesn't get any easier but God will help you endure.

Billy G

Joan Marie. thank you for encouraging others to find answers.When we have o idea what we are dealing with we can seek no answers.I have had experiences dating back to my daughter as an infant.Shortly after birth she began vomiting but not your usual way or contents.It would squirt out like a hose.The doctor kept changing her formula.Then I noticed she would turn extremel white and then become blue around the mouth, nails and eyes.I was told of this excellent doctor.He saw her and immediately suspected heart problems.Back then hey did not have te means of testing as they do now .She went to Childrens Hospital of Phila.,EXCELLENT HOSPITAL.SShe was diagnoised with a hole in the lower chambers of her heart and enlarged arteries.She was placed in an oxygen tent and givem digitalis and diamox.After 2 weeks there she came home and remained on this medicine fr 12 years.We went for check ups every 3 months.She never was required to have srgey as the specialist said her body had done, successfully, what surgery would have done.She is now 44 years old.It was learned this was an inherited condition.My x husbands other daughter had the same problem but required surgery.I was very young but knew enough to seek answers.I have friend who have not settled for just a few diagnosis and were successful in their attempts.So many doctors treat the same problems all the time and are not up to date on all medical information.We may not always get the positive answers we want but we get a reason for a loved ones condition. My husband had a problem with colotis.He would tell his doctor something is wrong.Being the doctor assumed he had al the answers , passed this on as all in his head.We got another opinion and without testing this doctor knew my husband had colon cancer.Testing confirmed he had , had the cancer for at least 8 months.He had a nonreversible colostomy done.This too can be an inherited disease as you inherited the personality that causes the colotis.My son the same thing.He had severe ear problems.Our doctors just gave him medicine and I was not happy so I took him to an ear specialist.He was not hearing and had severe ear infection.Had tubes so many times.If I had not sought another opinion he would have suffered in so many ways.When we have had one doctor for so long they become to complacient.

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.

The "positive synergistic serendipity" of our Forum family is at work again!

Okay, so that's a mouthful... ...but it was my first thought when reading these last three posts by Judy, Chris, and May.

To tell the truth, I hope the diagnostics lead to thoroughly treatable and truly curative solutions for Judy, Chris, and especially their husbands. In fact, I'm sure there are many who would say the same thing. But even if the diagnostics lead elsewhere, there is great value in knowing what you and your loved one are facing, how a disorder can best be treated, and extending the quality of life we all seek. Godspeed to each of you and those you touch.

Both of you are quite courageous to keep going in spite of the difficulties but know you are not alone. Please allow me to reiterate May's words and ask you to return with updates. Because the Forum is visited often by unregistered users, your words could help many more than you may ever know. Don't stop!

With love and hope...Joan Marie

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

Joan Marie, thank you for giving these ladies more information to help them make their decisions.It is so good to have other options presented.Yo also know the need to be encouraged to go further when there is a need for answers and possibly a treatment.Too many times we give up and never find answers that help us and our loved one.I am so glad the ladies have chosen a course of action that will satisfy them one way or another.That is all we ask for when dealing with the unknown.When we have that gut feeling we need to act on it.I had it with mother and fought tooth and nails, but Pa. medical establishment makes all decisions on their profit and loss statements.We have a very large elderly population and the care is simply awful.The NH are lacking in comparrison to othe states.ladies, I congratulate you on moving forward and not wanting to settle for less.I hope you find the answers that will guide you on this journey.Please inform us once you receive ay information.

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 all,

I wanted to post a message here getting you all "up to speed" on the latest events regarding a possible Mayo visit. As you may recall, I had my annual physical on January 31 and spoke that day with our doctor about further testing at Mayo for Roger. That following week the nurse contacted Mayo in an effort to set up an appointment, and I was assuming there would be a good three-month wait for an opening. You won't believe this: on Monday Mayo called saying they had had a cancellation, and Roger could be fit into their schedule on Feb. 23. Can you absolutely believe it?

Yes, I'm still struggling with the decision, but feel it is the right thing to do. Being that we live in Minnesota and Rochester is only five hours away, it seems only right to go there when others fly in from all over the world to seek care at their facility. Plus, our two adult children feel it is the right thing to do, and I need to consider their feelings as well as my own.

No, I have not told Roger about the appointment as it would only cause him stress. I'll tell him about it on Sunday before we head south. I'm sure it will be stressful for him, but hopefully the thought of "eating out" will outweigh the stress of additional testing!

Thanks for your support and comfort; you are a great group of friends!

Love, Chris

Thank you for a great idea, Joan Marie! I've been sitting here feeling that there wasn't another way to get back to further checking. I believe this can be done without to much difficulty, especially since its all part of his 'checkup'..May, thanks also for your encouragement. The cardiology apt.is in mid-March. My children and I have all been wondering what to do next..so now we have a plan! This will be a better day. Thank you.
Judy

[QUOTE]Originally posted by Judy: ... My first thoughts were that if we could get to some identifying factor with this new round of tests, then we could get to work on either 'fixing'or delaying it. Now that once more all the tests are normal, my husband has evidence that all is well and he is quite relieved. I am thankful he is healthy but it means to me that it is much more likely that we aren't dealing with anything fixable. ... /QUOTE]

Dear Judy...

On one hand, I'm glad to learn there wasn't anything but "normal" results for your husband but on the other hand, I know that CT scans and MRIs are not always the telling factor when it comes to diagnosing the tricky demon Alzheimer's or other neuro-degenerative diseases in the earlier stages.

Please do not give up! My husband was also one of those people who "passed" all of his radiological testing with flying colors until his SPECT scan results came in. You still have avenues here, despite the current results. When you see the cardiologist, privately ask for another referral to a neuro-psychiatrist who specializes in the diagnosis and treatment of Mild Cognitive Impairment and/or Early Stage AD. Hopefully, you can "cover your tracks" by saying that it's part of the cardiology workup. In any case, there are yet other scans that can be quite helpful here, one is called the SPECT scan which is available through Scripps and the PET scan which is available through the Mayo Clinic. There are additional scanning diagnostic services available throughout the country at various teaching hospitals and the Veterans Administration.

Although there is no drug yet available that will "fix" AD, there are more than a few now that can delay progression of the symptoms your husband has been experiencing. I realize this is a very frustrating time for you and your husband isn't exactly willing to pursue more testing but I want to seriously encourage you to not stop until you find a reason for his untoward behaviors. Memory loss, hampered judgement, and personality disorders can be a lethal combination to the person who is effected and those around them.

Please keep in touch with us and know that we are pushing for you and with you...
Joan Marie

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

Judy, It is most difficult not to know what you are dealing with.You cannot put a name on it or know what the treatment could be.I think we all have this gut feeling that the answer is there if we persue it.I have discoverd the not knowing is a stressful as knowing.Trust in yur feelings and do what you feel needs to be done.We are wth you and want to be kpt informed.I neverdid get answers to others problems or her real cause of death, but I am continuing to work on that.I am now awaiting her records from the hospital.Some will be goven free.If I want day to day reports, I will have to pay.I will see what they send me and decide if I do or do not go further.I know I will go further.I want to know what decisions were made, by whom and all the medicines , amounts, she was given. My own experence is that you may have to go to more than on specialist to get answers.I had to go to 3 different dermatologists before I got a diagnosis.The one always seemed to e so rattled at the many patients he was to see, the second did not do any testing , not even touch my skin and made a diagnosis.Well I told them he was the worst doctor I had ever encountered and would not be back.The third was great.He did the biospy and determined I have several problems.Still have to have the allergy tests.I have talked to many , recently, that stated that sometimes the answer is their and you have decide whether it is important enough to persue.It is an individual decision.One that will satisfy you and help hubby

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.

Hello again
My husbands MRI results arrived last week and everything is normal. Every report from his physical exam was normal except that there has been a slight change in a heart murmur. He will see a cardiologist next week. Like Chris, I don't really know what else to do. I feel like having the medical reports laminated to show that I've tried. I would like the doctor to put something in writing (not sure what). My first thoughts were that if we could get to some identifying factor.with this new round of tests,then we could get to work on either 'fixing'or delaying it. Now that once more all the tests are normal, my husband has evidence that all is well and he is quite relieved. I am thankful he is healthy but it means to me that it is much more likely that we aren't dealing with anything fixable.
I am going to try to read that Mayo Clinic article also.
Thank you again for being right here.
Judy

Thank you, Mary, May and Joan Marie for your responses. I am grateful for your thoughts on this issue, as you've been there/done that. My thinking at this moment is to go ahead and schedule the appointment at Mayo, and sort out the decision to go or not to go as I await the appointment. I understand that there is a good three-month wait, so I'll have plenty of time to process the decision!

Thanks, Joan Marie, for clarifying the location of the Mayo article. I read the article and it certainly sounds like finding a cure for Alzheimer's is a priority to them.

If you have more thoughts on the subject, feel free to share your insight into this bizarre disorder.

Love, Chris

PS for Chris and interested additional parties...

After posting my response to you, I tried to test out the link below for the "Mayo at Front on Alzheimer's Efforts" only to find it unavailable for reasons not understood by my plebian mind.

This article CAN be accessed by visiting our Forum's News & Research Topic, under the On Line Articles Thread via my January 24, 2004 post. Sorry for the confusion... ...but it is well worth the read!

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

quote:

---

Originally posted by Chris: ...
Our doctor and I talked about the possibility of going to Mayo in the hope of finding a definite diagnosis. Roger's symptoms are so many and so varied, that he has everyone stumped. What is your thinking? Should we go to Mayo? Will a diagnosis (if they're able to determine one) really change anything? Am I wasting our time and money, or is it a good thing? I would value your opinions. ...

---

Hello Chris...

As Mary Morken and May have stated so very well, this is a tough personal decision which requires weighing the pros and cons both for your husband and for yourself.

With that said, as I recall, you've mentioned Roger is only receiving the limited benefit of his cranial shunt to relieve normal pressure hydrocephalus without any other drugs to relieve his continuing and escalating bevy of symptoms. In addition, I also recall you stating more than once you continue to have a "gut feeling" there may be something more going on here. As for me, I'm a firm believer of paying attention to those "gut feelings" and since you're still questioning this issue, I think you may be such a believer too.

The Mayo Clinic is a leader in diagnostics and treatment of Alzheimer's disease and related neuro-degenerataive disorders. In fact, you might want to read Sarah Skidmore's article from the Jacksonville Times-Union which cites the Mayo Clinic's research capabilities as well: Mayo at Front on Alzheimer's Efforts One of the most interesting things I found about this article was that it truly explained the disease without once referring to it as "dementia." You may find this attitude quite helpful when seeking further diagnostics and relevant treatment for Roger, especially if there is a concomitant disorder.

Good luck to both of you, Chris, and we look forward to hearing from you again.

Joan Marie

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

[This message was edited by Joan Marie on February 04, 2004 at 03:30 PM.]

Chris, it is so difficult not to be able to put a name to a problem. Is there a team of doctors, that you have faith in, that would meet with you to disguss these concerns? You are the one that has to make that final decision.If you have weighed the pros and cons of more testing , then you know what you want to do.IF ONE DOES NOT TRY WE FEEL WE SHOULD HAVE DONE MORE.The other side is will the testing be beneficial to the afflicted or cause them more anguish than good.The not knowing is so hard on the person lookng for answers to help the loved one.I never got answers for my mother, not even after her passing.

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.

Sorry, I hit "post" by accident...

...questions that can't be answered, like whether or how fast there will be decline, how much time you have, etc.

Hope you will come to a clear decision you can really live with. I will pray for you. -Mary