I need Help to Help my wife with her Big 0's

[Kat817 19]

Sounds very much like the description I was given when my SIL was diagnosed (I was with her at the Dr.). Is there a cause---a reason the "coating" is wearing off? Does the research say what the treatment is? How fast it progresses? Is there a certain area of the brain it tends to do this in?

Sorry for all the questions---

Kat

[Tired_Old_Man 1]

Sounds very much like the description I was given when my SIL was diagnosed (I was with her at the Dr.). Is there a cause---a reason the "coating" is wearing off? Does the research say what the treatment is? How fast it progresses? Is there a certain area of the brain it tends to do this in?

Sorry for all the questions---

Kat

No!! Do not be sorry. Two heads are better than one. When I find out, I will post it here.

I hope one of our nurse members reads this thread and has some first hand knowledge.

I do not think we have any doctors here at LBT. My EENT told me that he knows something about it, but not enough to discuss it in depth, so he is sending the MRI CD and report to the neurologist's office for my appointment on Monday.

[Kat817 19]

Well I am glad that you will have the CD with you, so you can ask questions, and see things for yourself as well. When they showed us my SIL's you could literally see white spots on the brain. The Dr. was willing to answer anything she ask him, unfortunately all of our questions occurred to us AFTER we left.

Now she takes a shot every Friday night. She feels kinda feverish and crappy for part of Saturday, she usually sleeps late, but by evening she is perking up...feels good through the week, winding down to Friday, when she gets her next shot. She has excellent insurance--we thought it was a good thing because the shots are over $500.00 a piece! BUT my niece has something that is in the MS family, and she is without insurance---and the meds she takes are actually paid for by the MS society. So regardless of your ins. status it seems to be well cared for, I thought that was amazing!

How do you feel Tina will take this---if you were to assume it is this "D" stuff?

Kat

[Tired_Old_Man 1]

Well I am glad that you will have the CD with you, so you can ask questions, and see things for yourself as well. When they showed us my SIL's you could literally see white spots on the brain. The Dr. was willing to answer anything she ask him, unfortunately all of our questions occurred to us AFTER we left.

Now she takes a shot every Friday night. She feels kinda feverish and crappy for part of Saturday, she usually sleeps late, but by evening she is perking up...feels good through the week, winding down to Friday, when she gets her next shot. She has excellent insurance--we thought it was a good thing because the shots are over $500.00 a piece! BUT my niece has something that is in the MS family, and she is without insurance---and the meds she takes are actually paid for by the MS society. So regardless of your ins. status it seems to be well cared for, I thought that was amazing!

How do you feel Tina will take this---if you were to assume it is this "D" stuff?

Kat

Thanks for the financial info.

Tina will not take it well. She has always been afraid that I will leave her by dying either from illness, doing dangerous work, being killed by criminals or being fat. One of the main reasons that I got my Lap Band was to show Tina that I was serious about being around for our 50th wedding anniversary (7-7-2017) which I have repeatedly promised that I be would be there for.

Oh, she also worries that I will be killed by someone in an argument over politics. I sometimes make cracks to people when I see a "Support the Troops" bumper sticker. I ask, "So you want the Troops home too?" or when I see people with the optional Florida License Plate Logo, "Choose Life", I sometimes say, "So you are against the death penalty, want the Troops home and want to fund food stamps, Medicare and Medicaid. Right?"

Life is short. You got to have fun.

[Kat817 19]

My DH is likely to meet the same end then!! He was "ask" at work to put a different shirt on, as his said "I am not Anti Bush, I am Pro Intelligence"....and with the company he works for that was a no no. He did not by the way cover it or change it!

I hate that Tina is going to be so distraught. I mean I would be scared to death, but would also want to be strong for Rick.

So it would be another 3 weeks if you opted to wait for an appointment where Tina could go with you?

How do you think she would react to knowing there was a chance---if you told her while she is in NY? Would it give her a chance to process the info, or make her to wigged out to get home safely? I would want to know, but others my Mom for instance would be a total and complete basket case...so waiting would be a necessity.

What about discussing this with your son/daughter---Brooklyn's parent---sorry I don't know which it is! Get their take on it all.

Kat

[Tired_Old_Man 1]

My DH is likely to meet the same end then!! He was "ask" at work to put a different shirt on, as his said "I am not Anti Bush, I am Pro Intelligence"....and with the company he works for that was a no no. He did not by the way cover it or change it!

I hate that Tina is going to be so distraught. I mean I would be scared to death, but would also want to be strong for Rick.

So it would be another 3 weeks if you opted to wait for an appointment where Tina could go with you?

How do you think she would react to knowing there was a chance---if you told her while she is in NY? Would it give her a chance to process the info, or make her to wigged out to get home safely? I would want to know, but others my Mom for instance would be a total and complete basket case...so waiting would be a necessity.

What about discussing this with your son/daughter---Brooklyn's parent---sorry I don't know which it is! Get their take on it all.

Kat

I spoke to my son and he agreed that his mother should not know about it until at least after she gets home. Tina would likely burst out crying and have no one, but her sleeping mother for support.

He is undecided about holding it in until after her birthday.

I could always wait until the day after her birthday and if she takes it too hard, I could say "APRIL FOOL".

Her birthday is March 31st.

[Kat817 19]

I think I would do it that way ONLY if YOU are feeling like a fool...she would have every right to clobber you!!!!

[Elisabethsew 50]

Demyelination is caused by an auto immune response in the body. Basically, this means that the body begins to harm itself. A certain degree of demyelination is part of the aging process so the treatment is going to depend on how the neurologist interprets your tests. It is quite unusual to be diagnosed with MS in your 60's but not unheard of.

My advice would be to wait until you hear what the neurologist has to say. There are many variables and many possibilities such as normal pressure hydrocephalis and viruses. I am attaching a link to some current research that is being done in this area.

I'll keep my fingers crossed that your news is good.

http://today.uci.edu/news/release_detail.asp?key=538

[Alexandra 55]

TOM, I'm so sorry to hear about this latest challenge! Personally, I'm of the mind that withholding information is never the best approach, but there's no reason to assume the worst or share that with Tina just yet. Let her know you've seen a doctor and they have a thought or two about what could be wrong, and you're following up with a specialist soon. Let her decide how much detail she wants/can handle right now.

I know if it were my husband, I'd want to know. Nothing would hurt me worse than the thought that he was trying to "protect" me by withholding important news. But what you've got right now isn't yet news, it's speculation.

There's no avoiding the full-plate syndrome. In my experience crises come in waves. But you and Tina can support one another by being gentle and honest, and not anticipating the worst when you really just don't know what's what yet.

Good luck with everything, TOM. You have our full support!!

[Sunta 4]

Hi TOM,

Firstly, I am very sorry to hear about your health concern. Is Demyelination considered to be MS? Or just a similar condition? My uncle has MS and has had it for many many years and just now they are coming out with new treatments and medicines that are helping him considerably. One thing to keep in mind is that every single day, medical science progresses, so a medicine that's not available today might well be available tomorrow. Also don't overlook clinical trials; many people I know have been helped by them. I'm sure you'll keep us all posted on updates and we're all wishing you the best.

Regarding your wife's birthday, my experience has told me thus: Whenever someone says "I don't want a fuss over my birthday"... they never really mean it. They might even think they mean it, they might even have convinced themselves they mean it. But deep down, no one does not want a fuss made over them. It's human nature to want attention, affection, friendship, and love, all of which are the very essence of birthday celebrations.

So whenever someone says they don't want a fuss made over their birthday I just go ahead and do it anyway. It's always turned out fantastic.

Here's an idea I used for my husband's 30th, when he was swearing up and and down, right and left, he didn't want ANYTHING done for his birthday. It might be the perfect solution for Tina.

I contacted every person my husband knew in the whole world, and via email or phone, told them his 30th birthday was coming up and that I was going to throw him a "virtual" birthday party. I had everyone email, call, send a gift, or something, on his birthday. It was mostly emails. He was flooded with like 50 emails, some from people he hadn't heard from in years. He was absolutely thrilled and delighted and he still talks about it to this day.

In order to do it, I had to contact people who didn't even know me, and get email addresses/phone numbers for all of his friends and co-workers.

I do have some more suggestions but must run out right this moment. I will write again later tonight or tomorrow.

Take care!!!

[BJean 16]

TOM: In your first post about this you wrote "Muscular" Sclerosis. Did you mean Multiple Sclerosis? Anytime someone in a doctor's office says a word like cancer, or multiple sclerosis, or alzheimers or any other possibly life altering disease, it is jars you to your very core. The very idea that there is a chance that your life could change dramatically or could even be shortened is a huge concept to have to deal with.

I've have had to deal with this several times in my life. Once for myself, the others with loved ones (and one very, very precious loved one). What I know for sure is that for a lot of people, getting the news in baby steps is much more bearable. Someone asked if Tina knows you went for the tests. If she did not, you might tell her something like: the doctor thinks my imbalance problem could be something we need to figure out by process of elimination. So he wants to give me lots of tests to rule out anything bad.

Then depending on when she is planning to be back with you, give it to her in very short, non scary bits, especially if she's still in N.Y. If Tina is anything like me, she will sense that you are concerned and she will want to know more, in fact demand it, and she deserves to know what you (actually both of you) might be up against. I think it will be up to you to sort of set the bar for how alarmed you both feel. If you appear to not be too worried, she will probably be less worried and be calmer. If you can focus on any positive possibilities, that should help both of you.

Let me ask you this, if the shoe were on the other foot, and Tina was in Fla and you were in N.Y. and she was undergoing tests, would you think it would be better for her to wait until you got home for her to tell you all about it? Would you want her to wait until after your birthday? Or would you rather she would share it with you and rely on you for moral support?

You're the only one who can answer that question, and the input you got from your son is the next best thing.

If I know you, you've already explored everything available on the subject of demyelinaton and MS, muscular or multiple, on the 'net and you've got a pretty good idea of what your worst case scenario is, as well as the best case. You know that there's a whole lot that plays into recovery or remission when it comes to illness and treatment. Much of it has to do with how you handle it. I have lots of faith in you and your ability to keep a positive outlook. You have a great sense of humor and although it might be hard to stay upbeat when you are worried, being depressed doesn't improve your prognosis, no matter what it is.

Oh geez, listen to me... I'm on Wellbutrin! I can say positively though, if you need an antidepressant, don't hesitate to take one!

Please, please keep us posted. You know we will all be thinking about you and wondering how you are and what you've found out! I wish I could give you a big strong bear hug, but for now this will have to do. :girl_hug:

[Tired_Old_Man 1]

Thanks to everyone who responding either here or via PM.

I will not tell Tina anything until she gets home on Tuesday.

I will make my other decisions depending on what the doctor says on Monday when I have my visit.

I am going to say something now which may upset some people, especially the women, I would assume. Tina and I are not equals. No two people are equals. Tina and I are so different that our friends were betting that we would not last mire than 2 or 3 years (even before we were married). We will have our 40th wedding anniversary in July.

One reason why is because we have made those differences work for us, not against us. I do some things that might appall many of you and Tina does things that might also shock you, but because we blend things together we have created a union that as a whole is greater than the sum of its parts. Where I am weak, she is strong and vice versa.

That means that she does things for me that many women would say, let the lazy bum do it himself, but I do things for her that people tall me she should be doing that for herself. But this is the way we like it and how we have made it all these years.

So when Alexandra said, "I know if it were my husband, I'd want to know," I believe her, but I don't think Tina can deal with it, at least not all at once. How do I know? We started dating in 1964.

I know when I have told Tina about problems and I needed her emotional support, she became so distraught that I wound up having to comfort her.

I know with MS, it would not be the case, but if I was told that I had 6 months to live, yes, of course I would share it with Tina. But if it is MS, ruining her birthday will not help and with all the other problems, I would rather wait for a while.

BJean asked, "TOM: In your first post about this you wrote "Muscular" Sclerosis. Did you mean Multiple Sclerosis? Anytime someone in a doctor's office says a word like cancer, or multiple sclerosis, or alzheimers or any other possibly life altering disease, it is jars you to your very core."

I am 100% positive about it. In fact it was just that one word "Demyelination" that I could not remember and when I found it by Googling, it was exactly as the doctor described it.

[BJean 16]

TOM: I find it very interesting that you and Tina have a similar relationship/marriage as my DH and I. We couldn't be more opposite I don't think. It definitely does work to make things very strong since where he has weaknesses, I am strong and vice versa. It has been an amazing marriage. From the sound of things, yours is at least as amazing as ours. Maybe even better and stronger. Congratulations!

Here's hoping that the reports on Monday will turn out to be very good and you will have spared her the opportunity to freak out. :girl_hug: I'm crossing my fingers for you. It's a little hard to type, but you're worth it.

[Carlene 12]

I can say positively though, if you need an antidepressant, don't hesitate to take one!

Or two....or three. Better living thru chemistry, I always say.

[Carlene 12]

Regarding your wife's birthday, my experience has told me thus: Whenever someone says "I don't want a fuss over my birthday"... they never really mean it.

Some of us REALLY mean it. Trust me on this.