Wife's RARE MS beating me down

[mirey45]

Finally got the cataracts done in DW's eyes. Her vision is back to 20/40. She was considered blind in her left eye a 20/4000, for years all the eye doctors did was give her a stronger RX and tell her it was due to the MS, never even looking for cataracts, until I took her to the Dr. that did my eyes. He looked at her and asked if she ever took steroids for the MS. When told her treatment over the first 10 years was ACTH, he had his answers. He told us that steroids "feeds" cataract production.

For the first time in over 30 years she does not need glasses except to read, it's like living with a "different" person, I got so used to her wearing glasses. So I guess what I am saying is if your having vision problems, check for cataracts if found get them done, it will be one of the best things you can do for yourself and partner.

One more thing, this is to all the partners going through hard days dealing with there loved ones and the MS. This "monster" is not "kind" it will wreak havok and pure HE** not only on the one with it but all their family and friends. You are NOT ALONE, we all have been there, and trust me you can get through it. Almost 4 years ago I was dreading that I came to the point in our life that it was time to look in to nursing homes for my DW, her MS Dementia had gotten that bad. I found this sight, vented, got support from the "beautiful" people out here and found the strength to keep up the fight even harder then before. It all is working out, prospects are even better then I could have thought.You can do it, you can beat this.

" The world is a very mean and ugly place, and it will beat you down and keep you there if you let it. You, me don't nobody hit as hard as life. But it ain't about how hard you can hit, It's about how hard you can get hit and keep moving forward. "

My best to all my "family" here 3 more month till our Grandbaby gets here, buy the way it's a little girl, is Grandpa gonna spoil her.

[mirey45]

My mom's MS has gotten severe and my dad is her main caregiver. He is really getting worn out and my mom is in denial about her condition. I am here trying to figure out how to help them both.

Hats off to you for your dedication to your wife!

Overboard, I have read your other posts also and I can only extend what ever support I can offer to you and your parents.

The pressure on your Dad with your Mom's denial has got to be taking a toll on him both mentally as well as physically. When Father's day rolls around I would like you to tell him "Thank You". Not many partners stay around when this DX is given, he stayed for your Mom, you and anyone else he needed too. You sound like a very caring, loving person just think what might have happened had he not been there to help raise you, had not "picked" up the slack.

My son had a job interview about a year ago, one of the questions to him was "Who are your hero's"? He looked at the interviewer and answered right away, "My Parents. My Mom has MS, My Dad spent his life both taking care of her and making sure my sister and I were raised right, taken care of, and together they worked hard no matter what that we both graduated college, and became the best we could be".

Be proud of him, he sounds like he did a great job.

I hope your Mom will "wake" up, and allow the plans for assisted living to go through, maybe your Dad can contact "city" services in his town and find someone to come in and help if the other thing does not work out. You might also contact their church, and see if you could get some volunteers to come in and help, my DW's Aunt had that help with her MS.

Good Luck, Hang in there Overboard, there is always a way.

"Don't give up, don't EVER give up"

[overboard57]

You're a hero

My mom's MS has gotten severe and my dad is her main caregiver. He is really getting worn out and my mom is in denial about her condition. I am here trying to figure out how to help them both.

Hats off to you for your dedication to your wife!

[Marchmama]

Wow

Wow reading this from some of you that have experienced it first hand as well as as the caregiver to someone with MS.

My Mom has had deep depression and attacked verbally for decades. I now know this is part of her MS. She can track back 30 yrs to the start of her MS but the true physical decline from the MS started 5 yrs ago.

I am deeply saddened as I have lost my Mom my friend.

I will never go for walks with her again but her rages and anger have taken her farther away from me than I ever imagined.

I know it is the MS and not my Mom that hates life, her family. It still sucks.

[CasinoKathy]

Mirey- thanks for sharing your story! I'm glad your DW is getting better. And also a big THANK YOU for reminding me to never give up, no matter how hard life gets. There is always hope- for without hope we have nothing! Hey- congrats to you and your wife on your upcoming grandchild!!

[BeneathTheLies]

Mirey I just wanted to say thank you. It took me almost 2 months to read this entire thread and at times I think I read the same posts 4 or 5 times lol. Crazy MS. I was just dx in June 2011 and reading this has given me hope.

Not only hope that my fiance will marry me, but stay with me and fight along side me against this horrible monster. I can only hope that he can have the same compassion and drive to continue through anything we may face. You are true inspiration and an amazing, wonderful person. Your wife is so incredibly lucky to have you.

So again I say thank you for sharing your story and your battle against this monster. I'm so happy that your wife is improving and I hope it continues. Congrats on the wonderful news, I'm sure you'll be an excellent grampa. Good luck to you and your family.

Heather

[mirey45]

On the go way too much lately. Found out in late August DW has cataracts in both eyes. Told by the eye Dr. that the ACTH and other steroids she received when first DX acted like "yeast" and just fed the cataracts.

We just got back from Chi-town where we saw a Neuro-Opth to get a 2nd opinion. Concerned about her losing all up close vision. He checked her over and told us that it would be OK to go ahead. Taking the lens out gives you a clean slate so to speak and her vision would be just fine needing reading glasses. Another problem faced and beat down.

I can't say this too much, this is my partner, my love and I will do whatever I can to fight this thing.

On a side note I want to share this with all of you. On Sunday my son called, said something came up he had to talk to us about, so could I go by "Mom" and put the phone on speaker.He told us his DW was "pretty sick the Dr. told her she had a "virus", but not to worry it would be gone in about 270 days. So don't worry Grandma & Grandpa."

The look of joy on my DW's face was beyond all I could imagine. She told me that when she was Dxed all she could think of was she would NEVER enjoy a "normal" life and now she's going to have a grandchild. Seeing her and hearing the love pouring out at that moment made this whole fight for 35 years worth it.

The rewards we all will get is worth it, hang in there, "don't give up, don't EVER GIVE UP"

best to you all my "family" here
"Grandpa" Mirey45

[Paloums410]

Happy for you and DW.
Thanks for the pep talk.
Your DW is at least willing to try something.

[Toomnyhats]

Thank you for the encouragement Mirey!

Glad to hear your DW is doing better - she's lucky to have you in her life and I think you are equally blessed with her!

[mirey45]

I have not been writing as much as I should, (BAD COMPUTER, TOO OLD) but I have been reading and now that I have a new Comp I can get back to my second love, this forum.

I have noticed a lot of "new" people writing here on the forum about their life and the struggles they are having with this "thing" we all face everyday.

Dealing with this from one side or the other seems like an eternal battle. It's rough, one of the toughest things any of us will ever face, but you can get through it. Heck 2 years ago when I started this posting I had hit bottom after fighting it for 34 years, and seeing what it was doing to my love, the person I decided to share my life with, my DW. Her MS was making her mind so bad my children and I wondered if it was time for her to be put in a nursing home, that's how bad the MS Dementia had gotten. I got it out on here, and then after getting it all off my chest took on the fight again, finding a treatment that helped her and gave us back each other.

To the people with MS, your not alone remember it hits not only you, but your partner, children family and friends. It's very hard for a partner to dream, and plan for your future together and see it all crumble around us, we react and most times we hurt the one that means the most to us.

To the partners, the one thing that gets forgotton most in our anger is why we decided to spend our life with this person. We love them more then ANYONE ELSE in this world, just because they got this did not change them or why we love them. NEVER FORGET THAT!!

My family over the years have found three quotes that we live everyday by,
" It ain"t about how hard you can hit, It's about how hard you can get hit and keep moving forward, how much you can take and keep moving forward"

" MS can take my body, it can take my mind, IT CAN NOT take my heart, my soul, my spirit or the love I have for that one special person"

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

You can do it you can survive this "monster", your not ALONE. Out here you have a large and loving "family" brothers and sisters willing to share listen and support any way we can. There is always an answer, always a way, and we are here for you.

Stay strong all of us.

[mirey45]

I'm sorry that I am not keeping up out here like I should. The progress my DW is having with her LDN treatment is going so well we seem to be "on the go" a lot more then the last 20 years.

Had to go back to Chi-town for a sad moment for the both of us. Her Uncle Bill passed in May. Bill was a special person to us both, but in my case even more so. He was married to my MIL's twin sister who also had this "monster" until she left all of us in 89. Bill was a "mentor" for me, always there to help, support and advise whenever I asked, even after his wife's passing. We shared a bond being the only partners in the family going through this, I could always count on him.

When I first met them, I could see that they were concerned about their niece and her future. They soon after felt everything was going to be alright, she was with someone who was NEVER going to let this get the best of her, someone who would fight with everything he had for her and loved her deeply. I thank him for all that he did for me and made this life I have a little easier.

I also had to undergo 2 eye surgeries in the last 4 weeks, cataracts. No problem very easy, but seeing my wife come in after the first one when I could see a lot better, and seeing the big smile on her face reminded me just how much I love her and just how lucky I am to have her.

Hang in there everyone, it's not as hard as it seems, life with the one you truly love is worth it no matter what you have to face.

[Loved]

Since I can't edit, I will post a correction.

In my previous post, I accidentally typed [but his grief and sorry led him]. The word [sorry] should read sorrow.

I am sorry for my mistake.

[Loved]

In one of the posts, someone mentioned the song 'It is Well With My Soul' and how that song was hurtful to them as they were dealing with MS. I think their words were that it felt like a slap in the face.

I'm sorry you felt this way. I know that an MS diagnosis brings all kinds of emotions and all of the 'unknowns' of a diagnosis like this are indeed difficult.

But I want to encourage you as well by telling you about the song you were wounded by. The man who wrote this song, Horatio Spafford, knew the struggle of hard circumstances. He tragically lost a son. And then when his family was sailing to Europe, he lost four of his daughters when their ship was in an accident. He wrote this song at the very place in the Atlantic where his daughters' had died.

When peace like a river attendeth my way, when sorrows like sea billows roll. Whatever my lot, Thou hast taught me to say it is well, it is well with my soul.

This man was not speaking in simple platitudes. He wasn't just throwing out pie in the sky good feelings and thoughts. This man was writing about what he had experienced and knew to be true. He had buried four daughters in the Atlantic ocean, a grievous event, but his grief and sorry led him to cry out to God and in his cry, he was given comfort from the Lord. He learned that even in the midst of great personal loss, all was truly well with his soul. The Lord was caring for him and giving him peace. That is a message we need to hear. It is not a slap in the face, my friend. It is an encouragement to cry out to the Lord who loves you and cares about what you are going through. He hears your cries and will answer.

He has heard my cries. And He has lovingly cared for me as I have lived with MS for the past 27 years. I pray you cry out to the One who loves you! He wants you to know what the writer of this song came to know. . . the peace that only He can give. Living in His love all is well. Bless you.

[RedVelvet]

Definitely can relate to Mirey & VeganAction

I happened to stumble across this forum about 6 hours ago and have not been able to stop reading since i began. It was not until reading this thread did i feel a deep connection. My sister (26) was diagnosed about 6 years ago. She was dx a couple of months after giving birth to her 1st child and after that everything happened so quickly. It was like overnight she completely lost her memory and all the other "typical" symptoms surfaced. Before this my sister was outgoing and lively with a attitude that was not for the weak. its like her brain has made a complete 180. She's child-like now. She's mellow most of the time although her fierce attitude does make an appearance at times. its like shes been replaced by someone else. It so sad to witness happen and i would give anything to have my "old" sister back. Along with ms her dr diagnosed her with short term memory loss and looking back i remember wondering with my family why was my sister affected in such a harsh way. other MSers seemed to only have physical symptoms, etc. But we hadnt heard of any other case that was like hers whose memory was no longer there. a little comforting to know that she is not the only one.

[Toomnyhats]

Going to fight this with her for as long as I can. All of you remember your partner is the most special person in your life. Stand with them, fight as hard as you can for them, love them.

Your wife is a very fortunate woman to have such a kind, compassionate man as her husband & life partner. You sound like you are a REAL Prince Charming to your Princess!