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Da Boys

May 7, 2007
New Zealand
My husband, (47 years old) was diagnosed with limb onset MND in November 2006. Since then we have sold and brought a new house without stairs. I continue to work, and my husband is on sick leave from the police. He is still very independent, but struggles with tiredness - particularly if he overexerts himself. I am struggling with managing his moodiness. My husband has a very strong belief in Christian faith, and appears to completely accept his disease and the path that lies ahead of him. It is me that has the problem. I feel guilty about my continued ability to go to work, about my resentment at having to complete all the daily tasks which we used to share, about what lies ahead of me in terms of probably being primary care giver.
I feel so selfish, and scared of the future... help!
Hello Da Boys. I am sorry for what is happening to your family. You landed in a good spot on the internet for support, tips, and information. Welcome.

The emotions you describe are perfectly natural and very common. The biggest thing about being a CAL is that people forget to take care of themselves! Please don't try to do everything on your own. Accept any and all services your community has to offer. You will need help with and for your hubby, of course, but any help around the house or doing normal household chores will be a blessing. I'm hoping htat if you spend some time building a support system for yourself the feelings of quilt, fear, and resentment will be relieved. Good luck and let us know how things are going! Cindy
Hi Da Boys.

I too am a caregiver for my husband - almost exactly the same age, and almost same occupation (my husband was a firefighter). My husband was diagnosed 1 1/2 yrs. ago, but has not been able to work for well over two years. Men with these occupations are usually very macho guys, and this is so hard! It's hard for them to be "weak" and it's hard for us to see them this way. How you feel is exactly how I've felt, and still sometimes feel. Cindy is right - take whatever help you can get - you will need it! I don't know how may times I've had a meltdown from feeling absolutely overwhelmed - this is a terrible disease - so hard on everyone. Make sure you do take care of yourself - you have a long road ahead, but you sound like a really strong person - you can do this!

I found this website by accident, and it has been such a help - everyone is so caring! I feel very lost and alone sometimes - no one knows what you are going through - but these people do.

All my best to you and your husband,
Thanks Beaner,
Would you mind me asking - what is your husband's current state of health ie what can he do/no longer do?
We live in New Zealand and there are good support systems in our local area which includes physiotherapy/occupational therapy and support groups which I have not attended. I am not ready personally to attend a support group, because I fear what I will feel when I see people who are much further down the track in terms of disability than my husband currently is.

My husband suffers quite a lot from chest discomfort. He had a heart attack four years ago, and when he suffered chest pain, he put it down to a difficulty with his heart, which we are assured it is not. Does anybody else suffer chest pain?
Is he having pain from the muscles in his chest cramping or spasming? Cindy
Neither. He has cramping in other muscles, but he describe his chest discomfort as "tightness" across his chest. He sits there with his hand on his chest, stretched out, feeling "uncomfortable". It causes him to cease all activity and seek to relax. We have talked about him making contact with the physiotherapist to consider a brace of some sort. I cannot give a more apt description sorry. Any ideas?
Some days my face feels tight.. I went one entire day feeling like I was smiling and talking out of one side of my face. If he's experiencing that sort of sensation and has had heart problems in the past, its no wonder he's uncomfortable.

Let's see what the others have to say. Cindy
Hi Da Boys,

My husband is progressively getting weaker. He can still eat quite well, but does not eat a lot. He sleeps 12-14 hrs a day, his hands are becoming very weak (they almost look like they are starting to curl), he can walk (very little!) with a walker, his breathing is choppy sometimes, uses a bipap when sleeping, and seems to zone out a lot. He is quite thin (has always been slim and fit), he doesn't complain about any pain - but he's not a complainer! He won't discuss his disease with anyone - I suppose part of that has to do with not wanting to look weak - so I'm never quite sure what he's feeling. I do watch him closely - I know he is too proud to ask for help so I try to anticipate what he might need without seeming to "hover" - that annoys the heck out of him! We do not have a lot of support - no groups here, and no drs here that really know anything. There are therapists, but he won't see one. You're very lucky to have resources where you are - take advantage of all you can, and all that your husband is willing to do.

One thing I've found with my husband is that he tends to downplay his symptoms - that's when I get a little pushy (or bossy as my husband says!) and I speak up - they need to get as much assitance as they can - no need to suffer needlessly!
It sounds as though your husband has progressed further than mine. My husband can still walk, although has a detectable limp. He uses a stick now, more for security. His left forearm muscle has wasted in comparison to his tight. He lacks small muscle strength in his hands. Eating is not a problem, in fact he has put quite a bit of weight on. He used to be a particularly physical man with running and weights almost every day. He does not sleep well at night, but that has always been the case after years of shift work. He finds he has to take very regular breaks to "recharge" e.g. showering, shaving, cleaning teeth and then rest.
If he overdoes things physically on one day, then he suffers for the next three days with particularly low energy as well as feeling emotionally low.
Still wondering about his chest pain though. Like a dull ache he would probably describe it as.
Da Boys said:
We have talked about him making contact with the physiotherapist to consider a brace of some sort. I cannot give a more apt description sorry. Any ideas?

Hello Da Boys:

A brace worn on the torso is usually designed to support or immobilize the spine in some way. From what you describe, it is the chest area rather than the spine that troubles your husband.

My husband has been diagnosed for less than a year. Muscle weakness was first observed in his neck and back. Since that time both arms (one worse than the other) both hips and legs have become involved. He is still walking with a walker.

He does have pain but it is in his back and neck rather than his chest.

He has been wearing a collar for a year and about 5 months ago he did briefly try a spinal brace. Although it allowed him to be more upright he could not tolerate it for long while walking and for even less while sitting. He required help both to put it on and take it off.

The type of brace was a Jewitt Hyperextension brace. There are many other kinds but the Jewitt offered the most support.

It supports the spine while still allowing the necessary movement of the rib cage that occurs as we breathe.

Just an off-the-cuff thought: as you state that cardiac problems have been ruled out you might ask your GP whether the small joints in the rib cage (e.g. where they attach to the breast bone) could be responsible for the discomfort. The medical name for this is costochondritis.

Good luck with finding a resolution to this problem!
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Thanks Landscape,
That brace looks very interesting.
I read the other link referring to chest pain.
My husband finds that the pain relieves when he is lying down and becomes exascerbated when he has to sit upright for a period of time eg at a desk, driving. I am wondering whether that would be the case with the condition you have identified.
We were thinking maybe it was due to a weakening of the stomach muscles perhaps?
Hello Da Boys:

The brace does look as if it would help but in our circumstances it turned out to be pretty much totally impractical.

I hope the physio can be of some help in identifying your husband's chest pain.
Hi Da Boys. I had a quad by-pass in 99 and sometimes get chest pain which I am not sure where it is coming from. From my experience, if your husband feels better laying down then it is probably bone or muscle related. Most people with heart related chest pain feel better semi reclined or sitting upright. Walking with the cane could be putting him off balance stretching the muscles on one side more and causing the pain later on. Just a thought. Does he get the pain after he has been walking a bit?
Yes he gets more pain after he has been physically active, or up on his feet more. We have been to a cardiologist and to all intents and purposes his heart appears to be fine.
Da Boys said:
Neither. He has cramping in other muscles, but he describe his chest discomfort as "tightness" across his chest. He sits there with his hand on his chest, stretched out, feeling "uncomfortable"... Any ideas?
Hi Da Boys,

This sounds very similar to what I experienced. I described it as tightness too and it felt as though someone were sitting on my chest when at its most intense. I attributed it to weakening of the diaphragm although I have no medical verification of that. It gradually got worse although some days it was better than others. I still have it and my breathing is significantly impaired although not to the point I need a bipap. It has gone on for about 3-4 years now.

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