New MS diagnosis

[dawnball]

This isn't really a Disney question, although Disney is likely to figure in eventually. My MIL was recently diagnosed with spinal MS. She's essentially numb from the saddle area down all the time and sometimes it's worse. She's out of work indefinitely on disability (her employer has offered her job that would accommodate her disabilities, but she hasn't decided yet if she'll accept). I know that there's a process of grieving associated with the diagnosis - but she and her husband seem to be very deep in denial. They're hoping for full improvement after the medication kicks in. She's unwilling to even get a stool for the shower where the warm water makes her legs and feet contract and twitch without her control. Instead she takes cold showers. She's even started to have difficulty climbing into the shower - but grab bars in the shower are unthinkable for her.

Is there anything I can do to help her accept accommodations that would let her live her life more fully? Every time I mention something like "You might want to install the handrail for the corner of your stairs" her husband says "No! You aren't that bad off, are you?" There's a limit to how many adjustments I can claim are "really for" my 2.5 yr old daughter.

I'm just feeling really frustrated right now, and I know that it isn't really my place to try to change her attitudes - but she's limited her life so much in the last few months that it's very hard to watch.

 

[Mickiethepooh]

You are absolutely right it is not your place to change her attitude. It takes time to go through denial as you say and it takes what time it takes, it cannot be hurried by outsiders. and you do her no favors in trying to get her to accpet your view of reality.

At this point you have no idea how she will do on medication. there are many forms of MS not only progressive. Many times symptoms remit for long periods of time.

I hope at some point she will find her comfort zone and realize she can and should use whatever accomodations she needs to to live the best life she can, but that is for HER to decide.

I don't wish to sound mean to you, and I am sure you mean well, but it is not something others can understand or tell a person how to act or feel as you said.

 

[Tosie]

Sorry to hear about your MIL's diagnosis. MS can suck.

However, it depends on what type she has. If she's lucky enough to have relapsing-remitting, then it is possible she may feel better after she's on the drugs for awhile. It also may depend on whether the drug is the right match for her - my dh takes Beta Seron; he tried copaxone but it didn't work for him.

Be patient and let them acclimate themselves as they need to. It may take some time.

 

[geetey]

Everyone's right. MS does suck!

I can say that because I have it.

I am sorry that your MIL isn't open to the accomodations. There are times when I wish people would be more realistic about what I can and can't do. On the other hand, because I do keep "doing", I am keeping myself strong. (Does that make sense?) Maybe she is just afraid she will start losing strength and *needing* those things, if she starts using them.

It takes a while to get comfortable with MS and all that it means. Give your MIL some time. Keep talking to her. Keep offering to help. There could be hidden reasons behind her refusal (who is going to install the handrails? who is going to keep the shower seat?) and things could just be overwhelming for her.

I know I have personally gone from walking a half marathon in January, to being *this close* to needing a wheelchair to get around in May, to back to regular walking in June. MS is tricky thing.

Hugs to your MIL, and you to for caring!

 

[dawnball]

Just to clarify a bit, I know what the major roots of her problem with accommodations are and maybe I should have explained, but it's a complex family issue. The short version is that her mother is encouraging her to make large changes in her life "because one day she'll need them" and her DH is adamantly against any changes because she'll recover fully on the drugs and be more active and able than she was before she started having problems. MIL is a people-pleaser and she can't please both of them.

I mostly am practicing as much reflective listening as I can and trying to keep my mouth shut the rest of the time. MIL tends to fish for guidance and I've probably been falling for it more with the new diagnosis. She brought up the stair railing issue 2 or 3 times ("what do you think about a railing in that corner?") and I said each time that DH would be glad to install it if she decided she wanted it. The last time I said "Yeah, you might want to put a railing in that corner" and got the response (from FIL, although MIL chimed in her agreement shortly thereafter) "No, you don't need that!"

I don't really care what accommodations she does or doesn't decide she needs. We're happy to help her with anything she needs (installing things, uninstalling things, research, whatever). I find being asked my opinion of accommodations to be stressful because there's no right answer. It's like "does this dress make me look fat?"

I find the rationalization discussions hard too. The ones where the stair railings are for my DD, or the shower chair is because "normal" people use a shower chair to balance on when they shave their legs, or whatever. She comes up with the explanation, and then I end up groping my way though guessing what she wants me to say. It's just very alien to the way I think and the way I react to my own inability to do things.

I'm not trying to "fix" her - that's her journey. I'm trying to sort out how she is rationalizing the accommodations she's making so that I can remember to be supportive of them - if that makes sense. I'm also trying to figure out how to deal with the stress of feeling "in the middle" or "manipulated" by these conversations. I do really badly when people ask me a question where there's a very subjective right answer.

I'm kind of thinking out loud and trying to clarify for myself what the real reasons I'm having so much trouble with the situation are - so I'm sorry if I seem to be contradicting myself.

 

[geetey]

I think I understand a little better. It sounds like her DH is having some difficulties adjusting to MS as well. It happens. My DH felt the need to tell EVERYONE. I like to keep it to myself. It made for a very ackward situation for the 1st year because I never knew who knew and who didn't! LOL! (Some family issues with that for us, including moving to a different state and the kids not being comfortable with people at school knowing.)

It sounds like you are stuck between a rock and a hard place. Her DH may feel like adding these rails, hand grips, chairs, etc... will scream "something's wrong!" to people who come over. Of course, in my opinion, he doesn't really have a say. One of the hardest things about MS is that it can be so different from 1 person to the next, so you are right! There isn't 1 right answer! Very frustrating for everyone!

I would probably take the easy way out and say.... You know, that sounds like a good idea and when you are ready for <blank>, we are more than willing to help <blank>. And then move on to another subject.

Hopefully, with time, everyone will become more comfortable with the situation. Has she started any MS therapy? If she just started, her medication could be making her feel yucky, which could be exaggerating her behavior.

Good luck, dawnball! If you need any MS info, feel free to ask. I am just over 2 years post-diagnosis and have been taking Avonex since 9-04.

 

[Mickiethepooh]

I agree that the husband has some issues and that it is not his call but again that takes time and they both need to understand the issues much better than I am sure they do now.

I am ten years post diagnosis, I also have RA and a heart condition. I have dealt with those issues and many more over the years.

Family that thought I was faking an illness, those embarrassed by me and making excuses for me etc.

Over time most of them adjusted and so did I.

The idea of we will be there if you need us is the best approach. and there are some great books out there on MS.

 

[dawnball]

She is on Avonex currently (I think next week is her first full dose), but she's going to ask her doctor about a new vaccine therapy that's in stage II FDA trials. It's a double-blind, placebo controlled study that requires she be off all other MS treatments for 30 days.

She has needle-phobia, so I know the injections have been very hard on her - she thought that her neurologist would do the injections forever with no fee, so doing them at home has been very hard for her. Her neuro has also prescribed the powder version of Avonex because he sees fewer side effects with it than he does with the pre-filled. The process of mixing the powder and filling the syringe and all seems to make her focus on the injections a lot more and just sends her anxiety through the roof. I think that if she can't get into the vaccine study that she's going to request (again) to be prescribed the pre-filled so that it isn't such an ordeal.

Her DH has major problems with disability, such that they left the local MS education conference early because he couldn't handle seeing disabled people any longer. I know that's a major factor in their adjustment process.

After talking with DH, we're just staying out of it as much as we can and offering to help out with anything they need. I'm used to staying out of their "we're getting divorced, no we aren't" conversations so I just need to remember that this is the same thing - and that they need to work it out for themselves. We've also decided to keep our medical research to ourselves. She has a small mountain of a materials (books, things from the MS society, things from the doctor, the drug company, etc) and adding to the pile isn't going to help anyone.

 

[geetey]

I have heard about that new study, but my doctor isn't participating. Bummer because I too have a MAJOR needle phobia! I still close my eyes and let someone else give it to me. Both my dh and my sister were trained. If I had to give myself the IM, I would probably pass out! (No kidding!!)

Perhaps one of the sub-q injectables would be easier for her? They are given on a more frequent basis but you can use an 'auto' injector.

OOPS! I am doing the same thing! Offering advice when it isn't needed! It is hard to stay out of that trap. Good luck, dawnball!

 

[Dashzap]

I know that there's a process of grieving associated with the diagnosis - but she and her husband seem to be very deep in denial. They're hoping for full improvement after the medication kicks in.

You and your family have my sympathies. I don't think there is any way to make people accept "reality". My dad had a severe stroke 8 years ago, and thinks any day now he will walk and see again. He won't. It is very frustrating when someone won't accept accommodations that could make their life easier.

 

[Harvestmooner]

My Mom was diagnosed in 1985. So this is something we have lived with for a while. Your Inlaws are scared to death and trying to come to terms with what this means in their life. MS is so different with every person. It will take a while for them to adjust. The best thing I have done for my mother is to be her advocate when she is in the hospital or with her doctor. Do research for yourself, so know what you are talking about. Help your MIL be independant as long as she can and help her keep her self pride and dignity as long as possible.
Best of luck!!

 

[EmmaPearl]

Hi!

I was diagnosed with MS almost 10 years ago, and I can tell you that on the inside, your MIL must be going through every conceivable emotion right now. If she is bringing up the subject to you, she possibly sees you as someone who may be willing to to empathize with her and "just listen" -- it sounds like your FIL isn't very receptive to her changing emotional and physical needs just yet.

The other posters are right in that MS is different with every person, and other people may indeed feel that your MIL is just a hypochondriac trying to get attention. Other people can't "see" her MS syptoms. If she had a broken leg in a cast, people could understand her need for modifications. However, no one can "see" her numbness or the nerve damage in her brain. She may just need reassurance from you that you acknowledge the reality of the disease and don't think she is overreacting or "faking it."

It is so hard to listen to people without trying to "fix" their problems, but your MIL may just be desperate for someone to talk to while she tries to figure out for herself what this diagnosis means for her. You will all be in my thoughts and prayers!


EmmaPearl

P.S. I took Avonex once a week for several years, and I always felt like I had been run over by a truck for a couple of days afterwards! The drugs all have potential side effects, though. Thank goodness there actually are drugs now for managing MS!

 

[shovan]

My brother in law was diagnosed with MS five years ago. He is still in denial! Luckily, he has continued to do pretty well. He gives himself injections with Betaseron, every other day. He works as a pipefitter in a shipyard & has continued working. He does seem to missing work a lot more often in the past few months. He has difficulty with severe headaches, vision problems & numbness on one side.

He refuses to discuss his illness & the future even with his own wife! He will not consider a job change or going back to school.

I understand his denial & your inlaws. My DH was diagnosed with MD about 25 years ago. For years, both of us were in denial. Then it just slaps you in the face and you can't ignore it any longer! My husband really did not want to change things in the house & use WC/scooters for a very long time. The severe back problems I now have, are most likely due to this denial. I finally had to put my foot down for him to make changes.

You can be there to support them, but you can't help them to accept the changes that they may be facing. It takes time. When they can no longer ignore it, they will need your help. Do not be surprised if she (or both) of them become very depressed or angry. It is a tough road to go down.

While they may resist your assistance right now, it will be a great blessing for them later on. They are lucky to have you!