[KathyM]

I have been struggling with the beginning stages of amyloidosis-related dementia. I warned my friends years ago this would occur. They claimed to understand and promised to be there for me. They have all turned their backs on me because I am not as much fun or useful as I used to be.

There is no specific treatment for amyloidosis-related dementia. At my last doc visit, I brought my husband in with me. I wanted my doc to explain to him how amyloidosis effects the central nervous system and brain. Doc looked like a deer caught in the headlights, and I realized he had no idea what I was talking about. All he could offer was a referral for a neuropsychological evaluation.

This made me angry because I am already acutely aware of my deficits and behavior. I'm devastated, humiliated, and terrified - knowing society has no compassion or empathy for people like me. I canceled the evaluation for several reasons: 1) we are poor and medicaid won't pay for this $4000 evaluation; 2) the evaluation would be worthless because those doing the testing have no knowledge of amyloidosis and it's progression - their results and recommendations would be worthless.

This isn't just about me. It's about my husband and son too. They are really struggling too, and I need to be strong for them. My illness interferes - the harder I try, the worse I get, the more trouble I cause.

My husband......He's treated like dirt at work and on the streets because of his Mexican heritage - or they think he's some sort of "Middle Eastern terrorist." BTW, he's 100% American - born and raised in Arizona, and so were his parents. My husband's blood pressure is very high, and I'm afraid he's going to explode. Home is no longer his sanctuary because I've become such a handful.

My son......He warned me when he first came home "Careful Mom, the military made me very hard." I see now it has also made him explosive and mean - even his "gangster" friends are afraid to cross him. He's been having horrible nightmares and sometimes lashes out at me for no apparent reason. This makes him even more upset because I know how much he loves me. I'm afraid he's becoming suicidal - he'd rather take his own life than take mine.

I live for my husband and son. Without them, I have no reason to live. It feels selfish of me to fight for my own survival because it's apparent I'm only making it worse for them.

If you were in my shoes, what would YOU do?

[Christina86]

I wish I knew what I'd do in your situation... but I don't know what I would do, honestly! Except find another doctor who could actually help more. I guess it's a situation of "manage the symptoms" instead of being able to cure the disorder? I'm sorry that this is happening to you. I'm also sorry about your son and husband - that really is a lot of stress for you all, everything combined.

Edit: Actually, since I don't know anything about MedicAid, is there any way perhaps of having counselling (for you and/or your family) to deal with everything? Someone to talk to??

[pachyderm]

Originally Posted by KathyM

At my last doc visit, I brought my husband in with me. I wanted my doc to explain to him how amyloidosis effects the central nervous system and brain. Doc looked like a deer caught in the headlights, and I realized he had no idea what I was talking about.

Can you do some Internet research and educate him? Or find other help resources that way?

[KathyM]

Thank you ((Christina)) and ((Pachyderm))

Hopefully, my son will be receiving counseling for his PTSD through the VA. My husband and I have always had to deal with racist jerks, but it became worse after 9/11 - and even more so when politicians decided to highlight immigration problems in our country. I'm not sure how a counselor could help us deal with the racist attitudes and attacks from others.

My corneal specialist here in Chicago is the most familiar with my illness, but focuses only on my eyes. He's the one who diagnosed mom and remembers her very well - described her as "very bitter," then shuddered. When I asked him about treatment, he shrugged his shoulders and said "We haven't a clue - just have to watch you and see what happens."

There are literally only a handful of us throughout the world with this disease. Dr. Kiuru-Enari, a neurologist in Finland, conducted research, but she admits very little is known about this form of amyloidosis. There aren't enough of us on hand to study. The only literature out there focuses more on our physical appearance or simply documenting cases found throughout the world - never even a hint of treatment.

I've been told more cadavers are needed for study....I'm more useful to them dead than alive.

[pachyderm]

Originally Posted by KathyM

When I asked him about treatment, he shrugged his shoulders and said "We haven't a clue - just have to watch you and see what happens."

Sounds like an honest man, anyway.

[(JD)]

Hi KathyM. I'm sorry you are struggling and aren't gaining much support IRL. I was wondering how you were diagnosed since you have had the full workup. Generally I trust opthalmologists with their cautions from changes in the eye that they see. However, there are no documented cases of this type of amyloidosis-related dementia passing from mother to offspring. That should be good news for you...and maybe give you hope that you don't have exactly the same thing.

I suspect that depression is causing you to feel so hopeless, along with the normal reaction if such a thing is true. Of course, if you have such a disease, generally denial won't help... but it might in this case? I mean, surely set your "affairs" in order, organize your life as best you can, write notes for those who will care for you should you need that total assistance (such as your favorite foods, things you are allergic to... etc, you know? Make a nice book about YOU!)

What have you tried to offset the symptoms..... there are herbs that can help stave off similar ones ( Kelp, Butcher's Broom, Ginkgo Biloba )

Get yourself as healthy as you can, exercise, eat right, go to positive places to draw on spiritually, educate yourself about your symptoms, research free studies and pursue obtaining approval for those tests! Create a support team of doctors, nutrititionists, physical therapists, psychologists and counselors. Let each one treat what symptom they know to treat and maybe together you will have a better outcome than your mom. Please don't assume things... it isn't in your own best interest.

Keep pushing your son to contact the VA and get into PTSD counseling asap. The sooner he's debriefed and begins, the less time it generally takes to find a decent life.

You husband also sounds burned out and may be depressed also... and right now with this Mexican flu going about, he may feel even worse. Find positive affirmations and print them off or write them down and post them around your home...read them...believe them. He may also benefit from counseling; most people do.


AND THEN? Find a life to live NOW while you're still you! WHY NOT?

((((kathyM))))))))))))))))))))) Im so sorry all this is going on at once.
I wish i could wave my magic wand and make it go away.
The only thing that comes to mind right now is maybe consulaing for all of you.
not sure if that helped. Scares me alittle with my son going in.

please know I care and I wish i had a answer.
Push your son to get help threw the VA i do know that. Or even else where
(((((((big hug to you )))))))))))))))))))))))))))))))))))))))))))))))))

[KathyM]

Hi Sky

By the time my mother was properly diagnosed, I was working at a hospital and living on my own. I didn't believe her because I had access to the medical library. There was nothing about amyloidosis causing blindness, and everything I found said it was quickly fatal - an end-stage disease. I attributed all her problems to her diabetes, as that can also cause neuropathies, blindness, heart and kidney problems. She would often tell me her eye doc wanted to see me too, but I continually blew her off. When she died in 1991, her cause of death was listed as a "sudden onset of sepsis."

Five years after she died, I went to LensCrafters for a new pair of glasses. When the optometrist looked into my eyes, he literally freaked out and rolled back in his chair. He said he had never seen anything like it before. He said it looked like I had Christmas trees etched into my corneas, and I needed to see a specialist.

I was able to track down Dr. Sugar, her eye doc. When he looked into my eyes, he was like a kid in a candy store. He also pointed out my facial twitches and "frozen" forehead. He brought in all of his medical students, residents, and colleagues to take a look and he told me the story of my mother.

Mom showed up in his office because our local docs had given up on her and referred her to him at the Univ. of IL. It so happened he had just read an article about a very rare disease discovered in Finland that caused corneal lattice dystrophy II, which was later found to be familial (hereditary) systemic amyloidosis. Not only did mom have the same symptoms, the patients photographed in the article were her cousins in Finland. Mom was the first documented case in the U.S., although my grandmother had it too (she died before the disease was discovered).

Finding no answers on treatment/cure, I became desperate. I wrote an open letter to the University of Helsinki in 1998. Dr. Kiuru responded and was very helpful. She had studied my family and wrote her doctoral thesis on our familial disease - even traced the mutation back 700 years to a single ancestor. She sent me a copy of her doctoral thesis, and it blew me away. It was almost like reading mom's diary of symptoms that we all blew off as "hypochondria."

Why would you say "IF" I have this disease? If you don't believe me, contact my eye doc: Joel Sugar, M.D. - Univ. of IL Medical Center.

[(JD)]

Well I did say if because I'm not a medical doctor and you haven't had that work up. But it wasn't as if I was completely doubting that you are suffering from this disease... I'm trying to be optimistic.

Generally I trust opthalmologists with their cautions from changes in the eye that they see.

That it's so rare makes it very difficult...all the way 'round

I think the ideas/suggestions I gave were good. It's always good to attack a problem if you have such anger or energy...if you can do so in your own best interest. Alzheimers is close to what this disease is, and I would be trying those remedies, even the herbal...and I wasn't jesting about the spirituality. I believe your own body can heal itself, and at the very least slow down any dis-ease.

You might try some of the cancer support websites..they have wonderful mindfulness and meditational healing resources.

You have choices. They aren't necessarily good ones... but we all run into life/death/illness issues and we make the best decisions we can and go on... to find the best life, considering.

A short time back I made a "bucket list" for myself. It helped me change my perspective about what I want out of life. You know I am a faither in God, and He is huge in my life. It makes a difference to me to have this in my life. I hope you can find suitable resources to give you the best life you have for now. There is always hope that maybe something they find for alzheimers will also work for you...and that could be next month, we just don't know!

Let PC know what kind of support you wish us to give you, and I'll bet we'll be right there!

[KathyM]

Originally Posted by _Sky

Get yourself as healthy as you can, exercise, eat right, go to positive places to draw on spiritually, educate yourself about your symptoms, research free studies and pursue obtaining approval for those tests! Create a support team of doctors, nutrititionists, physical therapists, psychologists and counselors. Let each one treat what symptom they know to treat and maybe together you will have a better outcome than your mom. Please don't assume things... it isn't in your own best interest.

Sky

Dr. Kiuru-Enari confirmed my diagnosis back in 1998.

I'm as healthy as I can be at this point, and eat healthy foods when I'm able to eat solid foods. I'm whole in my spirituality and relationship with God. I've been educating myself on this disease for the last 13 years, not to mention growing up observing the behavior of a "patient" very close to me (mom). I know all the medical and personal stories of my ancestors in Finland.

I appreciate your efforts to help, but I don't think you understand. It's like telling a patient with Alzheimer's disease if they focus on nutrition, education and positive reinforcement, they will no be forgetful and confused.

The amyloid protein that effects the brains of Alzheimer's patients is the same type of protein that is produced in my bone marrow and is flowing through my bloodstream. The amyloid plaques slowly lodge and build up wherever they choose - organs, nerves, and all tissue down to the cellular level. My face is paralyzed/drooping with what they call a "classic Bloodhound look," my corneas now look like the surface of the moon, my kidneys are producing way too much protein, I have a dilated aortic root in danger of dissection, orthostatic hypotension causes me to faint - even sometimes when I'm sitting, and occasional cardiac arrhythmia. My skin tears at the slightest scratch and develops dark purple sores. I have peripheral neuropathy in my arms/legs, as well as autonomic neuropathy (causing the heart rhythm/BP and gastrointestinal problems). I also have intermittent bouts of trigeminal neuralgia. It has also begun to infiltrate my lymph nodes.

I don't qualify for a stem cell rescue as with other systemic types because mine is hereditary. Due to a mutation on the 9th chromosome, the gene would continue to instruct my bone marrow to produce an overproduction of amyloid.

I deal with my pain and overall health problems as best as I can. It's the problems I'm now having with my brain function that concerns me most. Medical literature confirms a build-up in the frontal lobe.

Would you give the same advice as you gave me to an Alzheimer's patient? Wouldn't the professionals you mentioned need to have at least SOME knowledge of Alzheimer's disease in order to help the patient? That's my problem - no one has any real knowledge of my illness and are quick to assume the effects of the amyloid don't matter.

As for my husband, you're right about it causing him more grief out on the streets. I wish people would stop calling it the "Mexican flu" and blaming it on Mexicans. It only leads to further discrimination. That kid in Mexico who first got the disease got it from a nearby pig farm owned and operated by a U.S. company. I'm glad they're not calling it the "American Business flu."

My mother-in-law is a nurse in Arizona. A frantic doctor approached her the other day and said "I just came in contact with a MEXICAN! WHAT SHOULD I DO!?!" My husband joked she should have told him "Give me your wallet and your expensive watch and you'll be safe.'"

[(JD)]

Perhaps I've only added to your anguish, and should have waited until you tell the entire story so as not to suggest anything you've already tried, as that obviously upsets you.

I don't do the "oooohhh what a pity" type posts very well.

I think I do understand though, and was trying to find some idea that might send you onto a new idea... since you are so mired in the negative with it all. It does sound terribly negative, and isn't any way to live. But what else could I say? I doubt that, "suck it up we all have horrible things to live and die with" would have hardly been supportive. And it isn't who I am. I am always looking for the glimmer in the distance.

You still have choices. If you feel you have completely exhausted all of the resources and there simply is no hope for cure or slowing of this disease, what are they? You can continue and only focus on panicked researching, you can stop and try to live what life you have left to it's fullest, you can lie down and die, or even some other choice maybe.

I'm here to support you in whatever choice you make, except to lie down and die. You wouldn't need PC for that.

I am terribly sorry you feel you are at the end of the good life, and indeed you may be. But I speak from experience that I have been at that point (more than once actually) where there was NO hope... yet here I am. If it happened to me, and it's happened to others, it can with you. I just want to try and give you that glimmer you might have ahead.

[KathyM]

Originally Posted by pachyderm

Sounds like an honest man, anyway.

Thanks Pachyderm - he's very honest.

During my first visit with him, he made me angry because he appeared so gleeful. I was reeling in a state of shock by this news I had never believed before. For my entire life, I vowed I would NEVER, EVER be anything like my mom. This jerk was looking deep into my eyes and telling me I was EXACTLY like my mom - all the way through. How DARE he.

While he was still looking into my eyes and taking excruciatingly painful photographs, he said to me "How do you feel about all of this - your mom was very bitter." I wanted to slap him for insulting my mother.

I asked him if he had ever talked to mom about me. He laughed and said "Yeah, I heard you were a real brat and pain in the butt. How come you never came to see me?"

Gotta love that man's honesty. We have a good relationship now because I know I can trust him to give it to me straight.

He likes to show me off to his colleagues. At my last visit, he had someone in from the East Coast take a look into my eyes. The doc looked through the slit-lamp into my eyes, sighed and wistfully uttered "beauuuuuuutiful." Then he caught himself and realized he was looking into the eyes of a living person and quickly apologized for....um....calling me beautiful. It's a sad day when calling a woman "beautiful" would be considered an insult.

[KathyM]

[quote=muffy;1010920Scares me alittle with my son going in.

[/quote]((Muffy)) I'm just as worried for your son. Rest assured he'll be in my prayers the moment he enters boot camp. Many of them do come home unharmed - I pray he'll be one of them.

Thanks to our beloved Vietnam and initial Gulf War vets, and the sacrifices they made, I think we've got a better handle on caring for them. I hope all those who claim to support and honor the troops" will understand it's never "over" for them.

[nightbird]

Hi Kathy,

As I was reading your thread, I thought about support groups or a foundation for your illness... is there one and if not, there are packets available on starting one... that's one source of support.

Your son, I hope, will utilize the PTSD groups and support at the VA or in programs out there for free support groups, but he's better off with the VA as they can help him if medication is needed.

I found real live support groups to be my saving grace, and coming here where I've met many helpful, caring friends.

You could ask your primary care Dr. to test you for your illness, so you can get an drops or medications that help... and as Sky suggested, there are wonderful herbal tinctures and teas with natural plant and root medicine in them for the eyes... you might see an herbalist as they are cheaper in the long run.

Also, have you checked out for any clinical trials going on for your illness?

That would be a great source of care and oversight of your illness, plus it will help others, the findings... your Dr. can find out for you and as I've learned, you can do the research for yourself.

You can join other types of support groups out there, where you can make new friends and have the encouragement and understanding you need... there are many, so you can ck out what type of groups are in your local hospitals and in your community first... then see if your life is affected by the topic the group addresses, like depression, PTSD, Chronic Illness, etc.

It's the best way out of yourself and into more positive perspectives... and I especially like that in many groups, they look at living your life as fully as possible, and help each other understand their illness, it's effects, and it's uniqueness... where you may be able to stall off the effects, say, for years... or even hope for a remission... it's all a possibility, yes?

So, I am telling you these things because I have been a cancer patient, and took steps to improve my situation, and make it easier for those around me by addressing the anxiety my illness brought into my life ~ it's much better now... and the fear ~ which I have found outlets to release it... and the other unigue aspects, well, I live and learn everyday, and that is just fine and dandy with me!

I hope that you can get more info, and research your resources in your area... and I will be thinking of you in your endeavor here, and hope with you that things get better all around for everyone!

Peace and Support,
Nightbird
xoxo

[KathyM]

Hi Nightbird

I was diagnosed in 1996. It was confirmed in 1998. By 2004, I was deemed permanently and totally disabled due to this chronic, progressive and terminal illness - NO cure or treatment is available. I'm homebound, losing my eyesight, mobility, and now brain function.

There are only FOUR people in the U.S. with my type of amyloidosis - a man in Boston, a man in Arizona, a woman in California, and me in Chicago. The only doctors who are knowledgeable and familiar with my type reside in Finland. They stopped research several years ago to focus on Alzheimer's disease.

A few years ago I attended a support group meeting for people with primary amyloidosis. It was depressing because none of it applied to me because I have the hereditary form. They have treatment options available - I don't. They have doctors who know about their illness and have treated others - I don't. They have funding for research and doctors conducting clinical trials - I don't, therefore no hope on the horizon for treatment. The meeting wore me out and left me feeling even more isolated.

I'm not comfortable being outdoors or out in public. The stabbing pain in my eyes is excruciating due to the corneal erosions. It triggers the autonomic neuropathy and puts me at risk of either fainting or vomiting/gagging in public. Due to the facial paralysis, I'm not able to smile. When I attempt to smile at someone it looks more like a scowl, so people usually turn away from me. Children appear frightened and confused when they look at me, and their parents don't want them to speak or stare at me.

I'm glad to hear you were able to survive cancer and find a way to move on with your life.

I know it's not much considering all you are facing, but it's all I got at the moment.

[nightbird]

I'm sorry ((((Kathy)))) to hear how difficult this situation is ~ but I'm a hope fiend so I'm going to write one more thing... did you know there are resources for funds and hotel stays, and corporations that lend their private jets to get people to clinical trials?

It doesn't have to be in your area, as you can get there, stay at hotel or place nearby with funds for your housing, and expenses... this is something I think is wonderful that the corporations in America can do for those who are terminal.

I wouldn't at all be surprised that you couldn't get to Finland thru this avenue.

Anyway, just the last suggestion I could think of...

I know that things feel bleak, and look bleak now.... but there is something about 'hope' that helps us hold out for a better time, or a good day.

I still am fighting my cancer, Kathy, and I've been through the mill, but my saving grace was hooking up with a small group of women going thru cancer in my community, and I found we re-inforce our strengths for each other, and if nothing else can happen for any individual, we find some healing inside ourselves, so that if we don't overcome the cancer, we have the healing and peace within to make each day count, as best we can, being human and all ~

I hope that you find your strength and hope and it carries you to where you may find relief.... and I do get alot out of reading books about individuals who face serious illness and books on nutritional healing foods that help us fight illness, in general, and then specifically.

Another thing I love to do now is listen to tapes at night ... of guided imagery and affirmations, relaxation, and specific tapes to address some symptoms I have, like anxiety, fatigue, and my need for general wellness ... so, it keeps me a little busier in the healing aspects of living.

There is definitely a difference in my life, I find, now that I am moving forward, so that I wish it for everyone.

I understand you are isolated out there, so I hope if anything, you can introduce some new healing techniques into your life... with choices like acupuncture, massage, exercise like yoga and qi gong, whole foods and juicing to help strengthen and heal many aspects of our health in general, traditional chinese medicine (they may have something for you there with herbs as well and the cost is very cheap compared to our medicine)... and the tapes that address symptoms by teaching our minds how to turn things around and start some new beginnings....

Anyway, that's all I have too... I'm sorry. );

If you want to have an affirmations thread or something on wellness, we could do that here if you think it will help.

If you start a thread, I'll be there. You can take that to the bank!

Peace and Healing Within,
Night
xoxoxo