Wife's RARE MS beating me down

[mirey45]

I have been a little busy to write, but have been following along daily to all your comments and concerns.

Wildflower I read your post on "playing" What If. I just have to say we all have done it in one form or another. You can't plan for what this "thing" might bring. MS is like snowflakes, no two are alike. Just when you get it all plotted out as to how your going to proceed, it "LOVES" to go somewhere you never expected, and all your planning is "out the window"and it's got the better of you or it thinks it has. Take every day on it's own. Wake up every morning and say to yourself, " What can I do to make sure this does not get the better of me or my family today." After as long as I have been dealing with this it's the only way I have found to survive.

Valor76, you made the comment that I have been dealing with this longer then you have been alive. Look at it this way, after all these years I'm still out here, still by her side and still fighting this "****". All of us took a vow, and swore " In sickness and in health ", because of the deep love we felt for that special person. I tease my wife and get her laughing by reminding her that it says "til Death", so once we get to the afterlife she's on her own. Marriage is a partnership, not always 50-50, and you have to protect the "assets" of that partnership. In this case it's our partner and family. I have two children, and more times then I care to remember had to be both Mother and Father. I look at them now with so much pride as to what they have become as adults, that's what it's all about.

A lot of people with this are fortunate to find and fall in love with someone that has a great Inner strength to carry them and there loved ones through this thing called "life". All of you at the next family gathering look at your in-laws and ask yourself "Could any of them deal with what I go through?" chances are the answer would be NO. I have 5 BIL & SIL and I know none of them could deal with what I do on a daily basis.

Keep strong "family", someday we will get the better of this "monster". Remember "Don't give up, Don't ever give up"

[betterpartofvalor76]

@wallflower

I know what you mean. It's so easy to just pretend sometimes. If I place all my focus on work, our daughter, cooking, etc., there's really not a whole lot of time to face what's going on. It's probably not the healthiest way of coping, but right now it's better than facing it all. When I slip and face it head on... I can barely manage to escape the shock.

I understand the pulling away from God, too. Honestly, I didn't realize I had until recently. We've kept going to church through all this, still as active as possible. But when talking to a friend recently, I recounted the first time I was able to go to church after my DW first started experiencing her symptoms. She had been in the hospital for just over a week and her best friend flew in from Florida to sit with her for the weekend and give me a break. As our church family had been so supportive, I felt "obligated" to attend the service and express our gratitude and give a report.

It was still so early in the game that we didn't even have a diagnosis yet. That loss was already so obvious, though. My DW, once a consumate professional, couldn't perform elementary level logic problems.

As I sat by myself in our usual back corner, with most of the congregation not fully aware of the situation, it came time for the most heartbreaking hymn possible: "It Is Well With My Soul."

I thought I was going to lose my mind right then and there, and we'd only been dealing with her symptoms for a couple of weeks. It felt like a slap in the face. Some horrible cosmic joke at our expense. The one place you're always supposed to find comfort ripped away part of my soul that day. I will never, EVER forget that experience.

I'm making a call some time this week to get an appointment for counseling. My friend helped me realize just how much I need it. If you can get it, I suggest the same for you.

Our partners may not be physically gone, but that loss and the need to grieve is VERY real.

[wallflower]

@ valor

wow. i'm SO sorry to hear of your situation, your 'loss.' my dh got ms when we were 2 months pregnant with 2nd child. he's been doing well up until January. i just don't know what's going on. he has so much pain all the time. he never gets a break. his feet have been on fire for 2 1/2 years, and in the past several weeks he's had pain everywhere. he's a different person. i still am grieving.

he tries so hard, but so many times he doesn't 'realize' that he should be concerned about something, or his reasoning is sooo 'off' I'm just in shock about it. he still works FT, and is certain not in the condition your dw if is in, but i still think i can relate on some level. we both lost our soul mate, lost our dream, lost our plans. i can't control my tears when i hear about couples 'just starting out' whether it be new love, marriage, new baby... takes me back to what we planned and looked forward to... and now its like a lost dream. like a death. i guess i keep hoping the MS will go away, or reverse, but i know it won't.

i've pulled away from God over the past 2 years. I feel like he spit on my family. sounds horrible, but i do. really i know he probably weeps for us.

this all probably sounds so dramatic. this is low time.

[Lattedah]

as someone who used to be a real go getter, is it possible your wife can't discuss any of this because it would be admitting to herself and to you that she is no longer in control of her own body, not the women she used to be , etc ?
Am not trying to say its all a matter of self pride and denial, MS does play some pretty nasty tricks on the thinking process
but there are things I do not say outloud about this awful disease and how it affects me, or my family because saying it outloud makes it so .

[betterpartofvalor76]

Sucks to live with and I would guess it is difficult to be around.

...

From the sound of your decription of your wife, she sound's like a real Go-Getter?

Difficult doesn't even begin to describe it. I can't imagine what it's like for you. I don't want her condition to be about me. It's not that. It's just... Once, ONCE I'd love to hear her say how much this sucks.

Yeah, she was a real go-getter. Emphasis on the was. MS has taken away almost everything about who she was, including that. She's got no drive. No passion. Heck, sometimes I wish she'd just be even a little concerned. She's just turned into a Pollyanna.

She's been through PT and OT. They helped a lot in getting her to where she is now, but she plateaued in August of last year.

Thanks for your words, though. I'm glad you've been able to find some relief.

[tommylee]

It's like she aged 50 years in the span of a few weeks..

Yup. That is pretty much what it feels like.
Like your youth and strength have been taken overnight.

Sucks to live with and I would guess it is difficult to be around.

Invasion of the Body Snachers? I wish I could just walk out of this crappy sci-fi movie.

From the sound of your decription of your wife, she sound's like a real Go-Getter? If she has not tried it yet; she may bennefit from some PT.
PT and diet have made a big improvement for me, it may help her?

I have not pooped my pants in over a year!
Now I can walk on my own and look pretty normal.

I don't claim that PT is a cure-all or want to give you any false hope.
But PT and diet have shown slow steady improvement for me, It my help her?

[betterpartofvalor76]

mirey45 and others in the same, similar boat...

I can barely read your stories. In so many ways they hit too close to home. In others, I feel guilty for having felt so sorry for myself this past year. Of course, if I hadn't been feeling so miserable lately I never would have found this place today. Since I'm new here, I suppose I should introduce myself and my situation.

I'll be 34 this year and we'll celebrate our 9th anniversary not long after my birthday. Not long after that, we'll celebrate our daughter's 4th birthday.

My wife was once one of the strongest people I'd ever met. She worked harder (graduated from our private college with a 4.0), played with more abandon and cared more deeply than just about anyone. All of those traits, and then some, combined a few years ago when we decided to start our family. Like many couples, we had some difficulty conceiving. My wife was required to make some lifestyle changes for a time and she did so happily.

In time, our daughter was born. She was so perfect and we were so looking forward to wrapping her in our arms and surrounding her in love from that first moment. Unfortunately, I was the only one who got to do that the first few days. My wife went into congestive heart failure as labor began. Only through her OB's quick response and God's timing and grace was my wife's life spared. She spent the first 3 1/2 days of our daughter's life in ICU.

I'll never forget the moment I got to watch them meet one another face-to-face that Christmas Eve, and witnessed that bond form.

My wife's always been a workaholic, which is why I listed that trait first as I began to describe her. The wonderful thing about her, though, is that she pours that intensity into the effort she gives everything - not just her profession. She was an amazing mother from the start. She poured her everything into loving and caring for our daughter. I'd always been proud to call her my wife, but the joy I got knowing she's the mother of my child was indescribable.

Life eventually got simpler. My wife's health returned and her heart strengthened. She went back to work and juggled motherhood and profession like an old pro. She even managed to get a promotion.

Things took another downturn a January/February 2009, though. After the rapid onset of a series of severe symptoms and lengthy hospital stays, my wife was diagnosed with MS. Over the course of 38 days and, she had three separate stays totaling 23 days in the hospital. She spent another 4 of those 38 in an in-patient rehab facility.

The MS attacked both her body and mind. For a long time she wasn't herself, even once she started to improve. She wasn't able to care for herself, so she had to live an hour and a half away with my MIL while I kept our daughter at home and played single dad.

She's been "better" (and home) since August, but that's not saying a whole lot considering I once spoke to her PCP about needing to be told in no uncertain terms if things ever started to go downhill quickly.

She's lost a lot of her hearing. Her mental faculties have diminished greatly. Just got our daughter potty trained last summer and now my wife's in diapers. She's almost completely incontinent (both urinary and bowels). She's got no stamina. Her coordination's all but gone and she's had to stop driving. She's gone from a career-driven woman to staying at home watching the Game Show Network most of the day. It's like she aged 50 years in the span of a few weeks.

In short, I've gone from living a happy life with the woman of my dreams one minute to scraping by as a single parent to two "children" instead of one.

I don't know if it's the meds or her particular condition, but she stays "up" all the time. It's hard to live with someone so... oblivious. Especially when that person is supposed to be the one who "gets" you more than anyone else in the world. We rescued a puppy from the pound just a couple of months after we were married. She loved that dog as much as I did. We had to put it to sleep in January because of widespread cancer... and my wife couldn't understand why I was so upset.

Sometimes I think the hardest part is that she *has* recovered so much more than we once expected. Some days it seems she's so close to being the woman I fell in love with all those years ago, yet that only shines a brighter light on all the ways she isn't.

People who see her when we go to church or whatever, always say she's doing so well. She can get around on her own. She's always got a smile. Etc. Her family is great and there's no way I could have gone through this without them, but they refuse to acknowledge how much we've really lost of who she once was. I try so hard to share in their optimism that at least we still have what's left, but I hurt all the time.

I've felt so alone in all of this. Sometimes I wish my strength lay more in doing things for myself instead of doing for others. I want so much to run away. This isn't what I signed on for.

But it's not what she signed on for, either. Ditto for our daughter.

All our close friends have long since moved away. I have no time to make new ones. Family's no help emotionally / psychologically speaking. Don't have the time or money to see a therapist.

But I'm losing it. And it's only been a year. Mirey45's been dealing with this since the year I was born. I know a lot of you others have been dealing with it for a long time, too. I just had to stop reading after a while.

Anyway. I just wanted to introduce myself. I hate to know there are others out there experiencing anything close to what I am (if not worse), but knowing it does bring a small bit of comfort.

Peace to you all.

[Lattedah]

mirey45.. reading this thread has been as heartwarming as it has been heartbreaking. Your dedication and commitment to your wife brings some peace to my mind regarding what lies ahead for my dh, he too is a very , kind , loving, dedicated man and it breaks my heart that MS will be such a burden on his life. a couple years ago during a bad MS flare, I desperately tried talking him into leaving and getting on with his life. He told me I was his life and made me promise to never try to get rid of him again. of course , I still feel guilty and I am certain at times he wonders to himself how he will deal with the MS when it goes from bad to worse. but we aren't giving up !

[wallflower]

i think its dh's cognitive problems, 'cog fog,' forgetfulness, lack of awareness that someone is talking to him, not understanding what is said to him that are more painful than physical problems. its like i'm losing a piece of him if i lose his mind... physical isn't nearly as important when i compare.

[gphxgphx]

While I agree there are people who misuse ms (or anything else) as an excuse to behave badly your remark below troubles me. It is like saying a person's Alzheimer's is problematic for others and they better learn to remember at least what others consider important. At the grocery store the other day my gf asked me six times which kind of pizza was better and I didn't even know she was talking to me. I asked her why she didn't poke me or something and she said she did and I didn't notice that either. Telling me I should change wouldn't help a thing, I surely would if I could. I don't mean to judge what you said because I don't know specifically what you're referring to and in your context what you said may be entirely appropriate and you have my sympathies and appreciation in any event.

I think that one of the points/issues that needs to be considered "is it ok for the MS patient to ruin my quality of life because he has MS?" I would say not. He needs to learn to control at least a portion of his behavior.

[mirey45]

One more thing, upon looking at her latest Brain MRI, I found a couple interesting points I would like to share and see if others might have seen them.

" The lateral ventricals are disproportionally large in comparison to the size of the cerebral sulci." and " A 6 x 4 mm, T2W bright, T1w dark focus in the right frontal corona radiata may be an old infarct vs MS plaque.".

I know a lot of "jargon" but this has me stumped. Trying to research it or get Dr. to translate for me( lot's of luck). If anyone out here can help I would really welcome the comments.

Thanks one and all.

[mirey45]

HubbyMS, here is the report that was sent to my wife's primary care Dr. I hope it helps you or anyone else on our board.

" I evaluated M B R in the Memory and Aging Clinic on 1/21/10. The evaluation is enclosed. To summarize, she is a 55 year old female with a long history of Multiple Sclerosis who has more recently been having memory and other cognitive problems, She and her husband were wondering if this was from the MS or from another problemsuch as stroke or Alzheimer's.

On exam her speach was halting. She scored 22/30 on the MMSE, (Mini-Mental State Exam). She was unable to draw interescting pentagons or a clock. Her vision is poor, but it seemed to be more of a Cognitive Issue. Howevershe had no trouble with word finding (naming animals). Her physical exam showed neurologic changes consistent with her MS.

After review of the literature, I feelthat her cognitive problems are most likely secondary to her Multiple Sclerosis. Only 5-6% of patients with MS develop cognitive dysfunction, but the discription of the abnormalities seem to fit her pattern. There is probably a less then 10% chance that this is early Alzheimer's disease. interestingly there has been a study using donazepil in patients with MS dementia and there was modest benefit. This may be worth trying. She has an appointment with a neurologist in Springfield for another opinion on treatment for her MS. She is mainly interested in trying naltrexone. If this doesn't help, then consideration could be given to trying Aricept."

I just want to add 2 things, one this Dr. was suggested to me by the local chapter of the Alzheimer Asst. NMSS was and as far as I know is still useless in helping those of us who have to deal with form of it. Two, The final conclusion of the study done by Dr. Bruce Cree at UCSF, in which he gave in a double-masked, plecebo-controlled 8 week study using 4.5mg nightly naltrexone over an Eight week period.

"LDN significantly improved mental health quality of life indices. Further studies with LDN are warranted."

This looks promising to me. I have had DW on it for a week but only the 3.0mg dose. Given the timing from Dr. Cree's study if it helps then we should see something at about 12-16 weeks.

I hope this information helps anyone of my MS "family". The answer's are out there we just have to find them ourselves and get someone to listen, until then remember,

"Don't give up, don't ever give up".

[chalknpens]

Thanks, Mirey

I have been reading this thread since its beginning, and believe it contains the best responses and support that I have seen on these boards.

Your patient, determined model of support for your wife warms us all ... I, too, am blessed with a husband who will stay the course, doing the shots that i can't reach or stay steady with, reminding me of things without chastisement, and encouraging me to do what I love (teach and write), and not focus on what I can no longer do comfortably (knitting, painting, driving in the dark hours.)

I am still working, but he holds down the fort on everything else at home (and that is considerable.) I have partners at school who are aware of my diagnosis and support me when things become more than I can deal with alone. I have only a few more years left, and with their support and kind friendship, and my husband handling everything else at home to allow me to maximize my energy for school, I will make it, and retire safely with a pension and health insurance. It is hard, but I am not alone. Bless him, and them, and you.

[mirey45]

Went to the Springfield Clinic here in Illinois on Monday. DW saw a really great Doctor there Tues. morning. Very patient, professional and very easy going in wanting to work with her for treatment of the MS.

She has had it 34 years now and his feeling was "If you want to get on some medication for the MS fine if not your doing so well now and have had it for so long that if you don't that's fine too."

We discussed LDN for her, he said that he saw nothing wrong with trying it. He said he had 10 other patients doing it and they are all doing well on it. He agreed that the relief we were seeking, ( sleep, bladder, and brain functions) could be helped by LDN and he was happy to let us try it. Gave us a scrip for 3.0 ( that's all he writes for, feels that dose gives the best chance. )

Got it and sent it off the next day to Skip's in FL for filling, now just waiting to get her started on it.

I also yesterday found the research article from a study done by Dr. Bruce Cree of UCSF on LDN. Bottom line of the article is "LDN significantly improved mental health quality of life indices. Further studies with LDN in MS are warranted".

To me this seems like a real positive step to help all of us dealing with the level of MS that affects the mind more then the physical. We will see only time will tell.

Until then all of us need to stay strong and hang in there.

[Paloums410]

Cognitive stuff

Cognitive problems are not a problem to Drs. and pharmacutical companies. You can't make money by curing a disease.(my opinion) only treating it. They always say depression,or try to put you in a nice little labeled mental box. They just don't get the statement that MS is personal. "It affects different people in different ways, and the same person differently on different days." We know the people we love and care for better than anyone.
Hang in there with the rest of us(my dh ms dx in 88)He has both physical and cognitive problems.
Try to remember it's all perception to people who do not have disabilities or a disease (including Drs.) If you don't look sick or disabled then most people think you're just fine.
Hope to see you in caregivers chat room tonite.