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Posted 9/22/2008 4:04 PM (GMT 0)

Hello all!!!  My wife, now 39, was diagnosed with MS back in 2001.   Prior to 2001, she was full time on-the-go home schooling mom of 3 kids but started to get dizzy spells, vision problems and was eventually diagnosed with MS.  Since that day our lives have changed and continue to change as the days go by.  Unfortunately for us, her MS has been very progressive since the beginning and her condition slowly began to worsen more and more.  We have been on all the ABC drugs, Tysybre, and even chemo.   

 

Over the last 3 years, she has lost the ability to walk, has a full time catheter and about 8 months ago stopped talking.  This has been the hardest thing for me and my kids.  In addition, during this time she's had viral meningitis which brought on seizures, a shunt due to Hydrocephalus (water on the brain) and multiple urinary tract infections.  As far as MS, it is really difficult to tell anymore when she is having an exacerbation because when she is felling bad it is normally associated with a seizure or UTI. 

 

As you can see it has been a rough ride and I am sure that I am not the only one in the same boat. 

 

I have been really blessed because my daughter (now 18) has been a lot of help helping me care for my wife while I work.  Now we are soon to be crossing a bridge that I am not sure how we will make it across.  My daughter will be soon moving out leaving me with no one to help me care for my wife.  Unfortunately, my insurance (retired military) will not cover long tem care or a long term caregiver.  Also, due to the fact that my wife does not have enough work points, we can not apply for SS benefits or Medicaid.  I really don't know what to do.  As a single income family, money is tight as it is without having to pay someone to help. 

 

I know that God will take care of everything but I am feeling a little overwhelmed with everything.  Any support, advice or encouragement would be greatly appreciated.

 

Thanks

 

Tim

Posted 9/22/2008 4:27 PM (GMT 0)
Hey Tim

First let me say i'm so tremendously sorry for all that's happened. I just can't imagine u'r loss and can feel u'r struggle and pain in u'r post. We are here for u to lean on as much as u'd like friend. I'm not familiar directly with any groups or financial support u may be able to qualify for, but i'd start by going thru u'r local MS Society chapter. There are lots of options that most don't know about. I"m not saying there is going to be something that fits u'r need, but i'd sure ask! If anyone needs and deserves their help, it'd be u'r family. Also, most local churches will be willing to help with sitting and cooking and that sort of thing for short periods of time. Maybe at least allowing u to go to work during the day. There may be a MS support group nearby as well who can be helpful to u. I know u may not feel u have time to go to something like that, but i really think u'd be pleasantly surprised at how much help it can be to just talk. And of course u now have us. We will be here friend. U must be an awesome husband and father and we're so glad ur now here with us. If u have time tonight, won't u stop in to chat with us? Read the 'Chat Reminder' thread to see what time it'd be for u'r location and instructions on how to enter the chat room. We have scheduled ms chat on Monday of each week. It's a great time to pick each other's brains and get to know some really wonderful people. Hang in there friend.
Posted 9/23/2008 12:42 AM (GMT 0)

Hi Tim,

I am so so so sorry.  I don't know what to say!!!  I am terribly sorry.  Have you considered contacting your local senator?  I have heard that on occasion, a senator can intervene for you and contact your insurance.  Discuss that fact that you were in the service.  Since you are working, you are paying into the social security system.  As a spouse, your wife needs to benefit from that as well.  You may want to try and contact an advocacy group in your state and see what they recommend.  I wish the the very best of luck. 

My thoughts and prayers are with you.

Posted 9/23/2008 5:20 AM (GMT 0)
Hi Tim,
Your wife is the same age as me. I was diagnosed in 2003 but have been fortunate to have a slower progression- supposedly RRMS. I get angry when I hear stories like yours. I could have been in the same boat, but for a different progression of the disease. I also did not have enough 'work points' when diagnosed because I had taken 7 years out of the work force to raise kids and go to college. Prior to that I would have had enough. This is a law that is unfair to women (or men who choose to stay home with kids!). They look back at the past ten years only. For me, I was slowly able to sneak back into working and if I make it another year I will have enough for SSDI if I should need it. There is a volunteer with the MS Society working on changing the way SSDI is given.
That doesn't help you I know. So to the practical- do call your local chapter and look for any help they can provide. They have grants you can apply for help with in home care. And this is a tough one- but looking to other family or friends for help and being very direct about how they can help. We have a local county agency for aging and long-term care and I don't know how it works, but family members can be paid a small amount as care-givers. This may be possible even if your wife can't qualify for SSDI. A good social worker can help you- often MS medical Centers have a social worker available.
It sounds like you have tried all the medications. I am so very sorry that none of them have helped. Have you talked to the neurologist about any trials, if your wife would be interested in any of that. This is why I do the walk every year (well, half walk and half ride the bus ;) , because we have to find better treatments for progressive MS and a cure.
This must be so hard on your wife, your daughter and you- I hope you may find some help here and some practical help for at home. Willow
Posted 9/23/2008 8:53 PM (GMT 0)

Hi Tim,

 

I’m so sorry your family is in this terrible situation. I’m afraid I don’t have any advice other than what’s been provided already, but I wanted to offer you my support and welcome you to the board.

 

Sunny

Posted 9/24/2008 4:00 AM (GMT 0)
Tim- I kept thinking more about your wife today. You mention that 8 months ago she quit talking. Is she able to write or type in order to communicate? It is important that you are finding ways for her to share what she wants. My speech was quite affected at first due to a brain stem lesion. I remember the absolute frustration of others having to make phone calls for me or my children trying to translate for me when I did talk. It's not clear why she's not talking, but have you been able to see a speech therapist or OT for other options? It seems it would take some weight off you if you could be communicating better. There are some amazing adaptive technologies (also available through society grants). I hope I'm not giving too much advice. I was touched by the fact that you are reaching out. Keep doing that and don't become isolated and don't allow your wife to become isolated. Hang in there and I hope that you find some help. Willow
Posted 9/24/2008 3:11 PM (GMT 0)
Willowmon, thanks for all your advice. Unfortunately she is not able to write due to spasticity in her arms. Basically, I have to do everything for her. Sometimes people ask if she is still aware of everything. Well I think so. When I walk into the room, her eyes always brighten up. As far as speech theropy, we have had people come out but have not had much success. On of them even said that there was nothing they could do. Point to pictures or hand gestures have not worked. We are unsure why she stopped talking. It could be from MS, the siezures, the hydrocephulas.. or all of them. I often tell her that she needs to try and say something. I know deep down she can do it. Even if it is only "OK" or "No". She just sighs.

Thanksfully, she does not have any problems with eating or swallowing. And I know that ther is sound still in there becuase when she yawns you can definately hear it.

I know from my post above, things seem pretty bad. However, we are very fortunate that my wife seems to be at peace. She does not appear to be uncomfortable, moan etc. When she is not feeling bad from a UTI, her appearance is really good. Her eyes are bright, she smiles, smirks and occasionly frowns. Just no verbal expression. Another thing that I just thought of, she use to be very emotional and cried alot. I can not remember the last time she showed that kind of emotion. It is really hard to know what she is thinking about all the time.

Thanks again for all the comments. I am glad that I joined this group. God Bless all of You.
Posted 9/24/2008 6:59 PM (GMT 0)

You have really been going through alot.  I really feel for you.  Your a wonderful person for sticking with you wife and trying to find solutions.  It is always good to know that your loved one is there for you.  I wish I could help you out.  Just know we are here for you. 

Posted 10/4/2008 12:16 AM (GMT 0)
Tom,

I recently saw a show on the effects of Lyme disease and how they mirror MS I don't know what state your from or even if your wife was ever bit by a tic that could carry this disease it's a tricky one.  I live in Oregon and my next doc appt is Oct 29th they told me they never tested me for lyme disease because it is so rare but you may want to look it up.  I figured with being paralysed that the doctors where going to run every test possible no matter how rare the disease was and well my faith in doctors a taking a turn I think.  So I am going to be tested where I live is a low to med area of lyme disease but again I don't know what state you are in.  If you are having difficulties getting shots or any medications for her please check out this website and see if they can help. http://www.rarediseases.org  They pay for my Copaxone and send me 3months supply at a time and I pay 15.00 for shipping because I am in the same boat.  You could try and apply for just the state disabilty program and see how it pans out, couldn't hurt..... Is there any state help for insurance I know we have it here in oregon but it's a lot of trouble to be able to recieve it.....They don't take MS here as seriously as they should.  Also check with your National MS Society they may be able to help you out a little here and there.  Take care and know we are all here if you need us...>God Bless you and your family!

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