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[Labinma]

My husband was diagnosed in spring 2014. It started as dexterity issues in his left hand. That mildly progressed for a year, but now he has slurring, -./right hand showing stiffness and atrophy and gate is altered. Can anyone out there share if they started similarly and if so where are you arc now as is there point? Trying to known what might be the next thing to go. He has lost weigh considerably.. What can I finds a caregiver ? A caregiver that is feeling so in the dark. Lisa

 

[scaredwifetx]

Welcome Lisa. My husband started with foot drop a now has issues in both his hands, both legs, diaphragm and breathing. The progression is different with everyone. Ther isn't a way to know what's next.
What I can tell you is that this forum is a wealth of knowledge and support. Anything you need to ask or say here is answered by the wonderful people here. Just ask away.

 

[affected]

Sorry to welcome you Lisa.

As scared has said, sadly there is no predictable pattern, so we can't say what next or how fast. We all wish there was something to map by!

At the top of the general discussion section are some stickies on anticipatory planning and other topics that might really help you to start with. Feel free to ask questions too of course!

 

[affected]

Have they suggested a peg feeding tube to stop him losing weight? Losing weight fast will very likely cause his disease to progress fast, it's really important to get lots of calories.

 

[cmropen]

Lisa, it's great you are here and reaching out. Being a caregiver can be overwhelming, even isolating at times, so it's wonderful that you are looking for support in this journey. ALS is filled with many ups and downs as you are aware and your husband is lucky to have you.

There are some caregiver specific forums on here. Look under Support For Caregivers--> "Current Caregivers". That might be a great way to connect to others who are going through this too.

The ALS Association also has a number of resources and support for caregivers. For example they have something called Care Connection which helps people build a network of "helpers" in their local community. Might be worth checking out. We can also use a helping hand sometimes.