You don’t, by any chance have Fatal Familial Insomnia? It may seem rude to ask, but some of us do have some experience with Motor Neuron Disease and maybe could point you toward someone who could help you.
What is going on here? Why you people are intelligent! Creative! Compassionate! Bad enough I am contemplating croaking in 12 or 14 months, now I have landed in an alternate universe. This can’t be the same planet earth I have been on for the last few years!
It must be all the morphene, neurotin, zoloft, ritlin and etc. I have been taking!
Let me go and adjust…in the meantime, thanks from a scared and beaten soul.
special k, i am in my twenties and do not have a life threatening illness. so i can’t even picture what you are going through. but i have gone through the shits (hardcore depression, random deaths, christianity->agnosticism->atheism->weird-hybrid-of-christianity-and-atheism, with-some-agnostic-and-gnostic-thrown-in-for-good-measure).
if i were in your shoes, i would cuddle up with my loved one and be wracked with sobs and cry and laugh until i could do either no more. but you may have done that already.
then i would (along with my loved one) think of what i want my childrens’ life to be llike in ten or twenty years. with me still in the picture. i would look at the pro’s and the con’s of that, and then figure out how to make the same thing possible without me.
that is, what do you want your kids and husband to be in x amount of years? how do you want them to be happy? what do you want them to think of you in the next few years? how do you want them to feel about life, and love, and infinity, and the wonders of existence?
finally, do what you can now to guide them toward these ends. draw them pictures that they can’t open for five years, and ten years. or write everybody that you love holiday greetings, with a provision in your will to have them mailed out. basically, find out what you and yours find special, and try and cultivate your speciaalness, even in your upcoming absence.
as i said before, i’ve been through the shits, and i’ve been through goodness. in the former i wouldn’t have hesitated to end it, and in the latter i would have tried to live forever. i don’t know how you feel about euthanasia, but it really should be a function of what you want the future to be (not the present).
i don’t believe in miracles, but i do believe in fortuitous combinations of the present. and even though i have never met you, realize that my heart goes out to you. if i had one thing to give to you, it would be your own past happiness. if anything, let everybody that you love know that they are loved. that’s it.
jb
Hello Special K. I lost my lovely wife to cancer when she was 36 (and the poster is correct, DR Brennen is a wonderful and compassionate surgeon) How we handled it was to enjoy out short time together, we were told she had 6 months but with the help and treatment at Memorial Sloan Kettering she lasted almost 3 years. She was the most important thing to me. Leave no thought unsaid,no deed undone- once when things were going bad we decided to go to Canada for a quick vacation (we lived in NYC) and while driving north,spoke of how we never got to Florida-well we ended up in Miami with coats and gloves. The other poster gave good advice, do what makes YOU happy! I will remember you in my Prayers -CWN
And while you’re at it, you might wanna get in touch with an Estate Planning attorney. If and when you do pass on, your family will not only be hit with the grief of your passing, but also with estate taxes, probate, and vultures knocking at your door claiming you loaned them money while you were still alive (when in fact you didn’t).
Good Estate Planning might not be able to reduce your estate taxes (if you want your property to go to anyone other than your spouse), but it can reduce or eliminate the rigamorole of Probate via things like Living Trusts. Probate can be long and costly if your family isn’t prepared for it.
Special K, I think I have some idea where you are coming from although it seems that your medical problems are more serious and more complicated than mine. I have had to think about what I would do if my doctors told me the worst, and I have decided that I would live it up while I could and then arrange to die as painlessly as possible before I degenerated too far. But I would have to be very, very certain that there was no hope at all before I would do that. Barring that certainty, I think the best thing to do is just lead a normal life. That’s what I’ve been trying to do ever since I was diagnosed.
May I offer another suggestion? Take a lock of your hair and put it in a locket, one of those old fashioned ones with the place for two photos, and put a photo of yourself in one frame along with your hair and a photo of each child in the opposite frame.
This may sound a bit weird, but it is what I did with my mohter, that way it is as though all I have to do is touch the locket and there she is.
Also on a practical side, get the funeral arrangements done now and out of the way. Get a book like Caring for the Dead, you can get a burial and all that stuff for $80.00.
Matter of fact I’ve already planned for my funeral so my family can blow any money left any way they please.
Take care of those two matters, so your kids will have a way to remember you, and your husband won’t go batty should the worst happen.
And, please, find another neurologist and get a definite diagnosis.
No use worrying about how to spend your last days, unless you know it is a sure thing.
Geesh, kid. Good luck, whatever that means.
Hello, Hello,
Many thanks to all who answered me. I sent a few personal replies out (e-mail) and hope that I did not offend anyone. I feel guilty about burdening some of the respondents with the details of my suffering and I have nixed the suggestion of my spouse to post the gruesome details of my problem. Nut cases and hypochondriacs want sympathy or attention, sick people just want to recover or they get disgusted and miserable. Witness my tracer treatment. Sorry.
I can’t drive the sports car I got for my birthday too much as I slip into comas and lose control of everything. But I do intend to hit the Carribean, Bahamas and try to make Egypt and Moscow in the next year. Medically, I am going to a special group at the National Institute of Health after some more tests from local specialists. Keep my e-mail address if any of you run down medical stuff or to harrass my spouse on the date in the next paragraph.
If you can calendar ahead for Sept 15, 2001 — I have asked my spouse to contact Straight Dope to provide the denounement details in the event that I am not able to do so. I shall also allow him to provide all the horrible details at that time. He sees this thing (and my response to it) making me some kind of a hero or something.
Special thanks to Lindsay and everyone who advised me to enjoy life and express my feelings. A local religious person had given me guilt about my hedonism and that started my inquiry. Spouse wants me to hire Lindsay to be my agent and do an AOL poll and article series. Fine, now I go out rich with the notable accomplishment of turning AOL into a tabloid!
The words of the song “Closing Time” keep coming to me,
Special K
Here I am, Special K. Tell your spouse I will do the lookups for free.
I think you have my e-mail, if you feel comfortable doing so you can tell me the Differential Diagnosis, and your Chief Complaint and I will search through Dr. Klawans many articles on Motor Neuron Disease, he wrote well over 300 papers.
Be glad to help.
For the record ALS and Parkinsons are thought to be caused by a toxin, which affects cells in the brain. People have differing degrees of susceptibility which is why some get illand others do not.
Parkinson’s can be brought on by cocaine use.
If these are caused by a toxin, then it is possible that a chelating agent can be developed which will attach to the poison and remove them from the body, the same way Wilson’s Disease can be treated.
K, my heartfelt sympathy.
I do have a suggestion for you.
My main point: if you are planning to end your life, please please please consider the children. You haven’t mentioned them or their role in your plans since your first post.
Please, be sure they understand what is happening and why, at whatever level of understanding they have (based on age, intelligence, and maturity.) They will certainly feel enormous loss when you are gone, but that loss may turn into resentment if they think that you “deliberately” left them. And don’t deceive them about it – if you and your husband pretend that you died of the disease, someone sometime will tell them a different version, and they may feel betrayed as well as resentful. (Obviously, this all depends on age; if they are too small to understand, then the deception that the illness killed you may be the best approach for a few years, but be sure your husband understands that he MUST tell them what happened as soon as they are old enough to understand and accept.)
You and your husband might discuss together how and when and what to tell them, but keep them in mind. Obviously, if they’re under 9, then don’t tell them too long in advance… they need a period – before and after your death – of grieving and coming to grips, and you need to judge how long that should be. Too quick is no good, and too long is no good. I’m not trying to tell you how to handle your kids, I’m only suggesting to think it through careful, and not be led astray by impulse. (There will be a natural impulse to tell them now, when you are making the decision… but that’s too early.)
There are organizations (such as the Hemlock Society) and books that can help your family cope with the psychological impact, both before and after your death.
Second, while there are plenty of unscrupulous and uncaring doctors out there, please don’t think ill of the entire profession just because you’ve bumped into a few jerks. Remember, 50% of all doctors graduated in the lower half of their class at medical school. You do have the right to insist on getting as clear a picture and as reasonable a diagnosis as they can give. And ditto with treatments. Tell them that you’re OK with knowing the “expected” range, you don’t need precision in their prognosis, you just want ballpark of “most likely expectation.” Then you can decide whether a specific treatment, at certain cost, is worth the risk. For some people, for instance, a chemo that may extend life six months to a year is worthwhile; for others, it may not be, on account of cost to family or potentially debilitating side effects.
Third, as others have noted, please be sure to do estate planning early. You’re spending enough on medical bills, there’s no reason to lose money to taxes after your death. And you might as well make things as easy for your husband later as you can.
Good luck, to you and your family, that whatever may come will be for the best. Knowing the time and method of your death can be viewed as an extraordinary blessing, that few are privileged to have.
My apologies, Special K., I erased your message, thinking that I wouldn’t hear from you again.
IF you feel comfortable doing so, you can e-mail me again.
Do so only if you want to, tell as little or as much as you wish.
This is only a suggestion, you are not obligated to tell me tell me anything. I don’t think you offended anyone. You certainly did not offend me.
IF your disease is all that rare, I would be very skeptical that someone could tell you that your condition will degenerate that quickly, how could anyone know?
You do need to ask about your next physician’s credentials, where did he graduate, was he first in the class. If he didn’t get the highest grades, find another doc.
If the guy is competent, he won’t mind telling you these things.
Allow me to point out that you are the doctor’s employer. Without you, he has no income. So you are entirely within your rights to demand that he finish in the top 10% of his class.
Dear Special K, just rec’d an my update on Neurological Diseases and Treatments via e-mail, if you want to send me your address I will forward them to you.
Special K, my heartfelt sympathy. My recent experiences are consistent with the recommendations previously posted. My best buddy died of cancer 5 years ago, and my mom 2 yrs ago. (My dad also died 2 yrs ago, but that was unexpected.)
One thing that really pissed me off about my friend’s and my mom’s last year was they put off things they really wanted to do, specifically travel, because their doctors said such plans would interfere with their treatment. Well, none of the treatment did a damn bit of good in extending their lives or improving the quality of their lives (to the contrary, in fact), and the result was simply that they missed doing something they wanted, with no upside. My buddy expressed these very sentiments to me the last time I saw him, the day before he cacked. Said he would have gladly died sometime earlier, and not cancelled his trips to Tibet and Egypt. So, I’m not saying go out and be wild. But as your recent post suggests, you are taking advantage of your present level of health to do what you can while you still can. Bravo for you.
One suggestion, consider using video and other media to create memories for your children. What do you want to tell your children when they are 21? You could set up a series of birthday messages. Be creative. Might sound ghoulish, but so does the whole idea of dying several decades before you should have to. I regret not “interviewing” my p’s in the year and 1/2 after my mom’s diagnosis. After she died, I intended to do the same with my dad, but he died the next month.
DON’T PUT ANYTHING OFF! Hell, if you want to take your kids out of school for your last year or so. They can always make it up later. It isn’t as though they are going to be in college at age 24 saying, “Damn, I wish I had already been working for 2 years! Why did my bitch of a mom force us to spend time with her before she died.”
The fact that we don’t have national health insurance is a tradegy. If the medical bills are going to eat you alive and destroy your family’s finances you might want to consider getting divorced. This was you (and not your husband) could declare poverty and get medicaid insurance. This would also protect some of your family assets (the ones you husband gets in the divorce). I would talk to a lawyer about this before I did anything.
I wish I had something more cheery to say.
Which brings me to ask, did you ever work outside the home? If so, then you could qualify for SSA and Medicare.
Medicare isn’t the greatest coverage, but you can buy an additional policy that would cover the gaps.
One gets rather self centered in my position and I did not stress how little help there is for people without assets or a support network. Yet they keep telling us, in all these fuzzy commercials that we are protected! My spouse frequently asks “where would we be if we were normal people?” Even if we both had slightly above average jobs when this hit? What about Joe Sixpack if this happened to his Misses?
A grim outlook. But it makes those who mentioned estate planning look sooooo smart! We have done the estate planning but read on as to the perils we narrowly avoided.
We have some extra life insurance due to a fluke. Hubby was buying a ton on himself so he bought a smaller pile for me. We never thought to calculate all the things a mom does, espically for kids. He is an attorney, has an MBA in finance and has education in a variety of other areas (He graduated from college in two years after graduating 179 out of 184 in high school - so he is a character). He also studies everything but we had only a cursory review of this. We also had assets and a steady income without working when this hit me. If I would have had to work as I became ill, I would have been fired from most places (the early symptoms just made me look like a jerk), lost health insurance, not had his time to help with the kids and home, and forget the extra money for flying around to see new doctors.
For the average person, the kids would become de facto institutional wards, either left in the cheapest place possible or put in foster care. And they haven’t done anything. Family helps but like most people, we have found that family and friends to be best when you know that they have their goals, time demands and priorities, too.
Finally, Social Security is a blessing but my prescriptions are so expensive that my spouse continues to pay about $750 per month to keep private health insurance just due to my prescription charges. Remember that Medicare has a low “cap” of about $2,000 a year. Have those people ever bought prescriptions for a serious illness? Since I have private coverage and have seen the response of doctors to Medicare, I have never used it. Where is the “safety net”?
Yep, it is there, for the average person it kicks in just in time to keep the shell alive with no assets, home or family left.
My thanks to all and if I do live and beat this thing, I’m sending gifts to all. Otherwise you will have an ending to read about. Don’t be too sad for me though, I have had my blessings in this reality we call life and intend to savor a few more in the next year or so. And I am resolved to go like the woman (Claudius’ mom) in “I, Claudius” - with grace and honor. Having a heads up, I want my husband to be able to tell all that I left with dignity and courage at “Closing Time”.
Special K
Oh yes, my spouse and I reviewed the offerings of “supplemental” health insurance coverage. This is the “gap” coverage sold by private insurers to augment Medicare. Reading their ads, wow, you would think that they just filled in the holes in the government’s program with a program to pay the rest of the bills for a reasonable charge per month. Just filled those holes right up.
Wrong.
First, most of the programs are just for people over 65. The programs even have names like 65 Special. Anyone on Medicare is already paying some amount although this is small (like $60 per month) and the private insurance programs do pay extra charges, for older people. Some of them offer HMO coverage and just manage where the government does not so they provide some extra coverage in other areas. All very reasonable and clear.
The only programs for disabled people I could find required you to be part of a group they already covered or had other stringent exclusions even to get in. They made it clear that they certainly do not want us wrecks who can’t even hold a job at age thirtysomething let alone at a charge of a few hundred per month. Just common sense - if you were an underwriter - would you want young disabled people? Heck, we don’t have anything to do but go to doctors! LOL
Further, the coverage, and coverage is a charitable word, on the one or two plans I found was about as poor as Medicare. Common sense again, why would they open the gates for a couple of hundred a month for really sick people to run up triple that amount in bills?
The next time you see an ad for that stuff, assume you are 35, on Medicare, and then read the fine print. You will find that someone with $500 to $800 per month in prescription charges and in home care, appliances and etc. (hardly unique or unexpected when a young body is totally destructing) is paying $500 to $1,000 per month out of their own pocket. They do not cover any more. So Joe Sixpack goes on and spends his family’s money. Until their assets are gone and Medicade or some other sort of welfare program kicks in. Also, the hospitals write off a lot of charges, I am told. After you are broke.
We concluded that an illness like mine would impoverish a lot of people and the ads do not give you any idea of that sort. I would have had to move to a cheap rental home with my husband working for a good income or to public housing if he had an average job. Well, at least I would not have to worry about estate taxes. This may be right or wrong but it is not the impression the advertisements give people.
On the doctors, I will still try. I am going in for more brain wave tests with a new group of doctors! Seems a specialist and supervising doctor in a neurology group that had earlier indicated that some tests I had were ‘normal’, even in a letter to my personal and family doctor - was wrong. They do not think they can cure me at this new place but they really want to test me. The supervising doctor who had written the erroneous review, well, they have wonderful advertisements for his big hospital specialty group. The new one I am going to has nice ads, as well.
I guess all I’m really saying is that a lot of the warm and fuzzy feeling they hand us is bogus.
Special K
Considering how rare and unnamed your condition is, have you considered turning around and asking these new doctors, “How much will you pay me for the privilege of studying my brainwaves?” Some of 'em might jump at the chance of being the pioneer who first diagnosed your condition, what with the prestige of getting your work published in the big snooty medical journals and all.
I am very, very sorry for your illness. I, too, send you warm regards and best wishes.
I don’t mean to be negative, but, not knowing if you are subject to a lot of pain or may be in the future, I would make sure that I had a doctor treating me who believed in aggressive pain treatment. There is no need to suffer needlessly.
Also, hospice care might need to be an option at some point–a lot better than spending days in a cold and impersonal hospital being waked up every night at 2 am to get your temp taken, etc.
If you don’t mind I would like to include you and your family in my prayers.