Browncow- husband newly diagnosed

[Browncow]

Browncow
Hi everyone, my name is Maggie and my Husband was diagnosed with ALS last week. It feels like our world is falling apart. It started just over a year ago after we moved to a new area in Germany ( I'm British and my husband Andreas is German). We have 2 beautiful daughters who are still studying and leaving 3 hours away from home. We were in the process of buying our dream house but have decided to stay put in our rental home to take stock of this frightening diagnosis. We are both 54 and thought our lives were taking off again as Andreas has been commuting on and off for 22 years.
How do we manage to get through this time.
I have been looking in the internet for diet change (Paleo) supplements and the link with Lyme disease.
I'm so desperate not to lose my loving, caring, best friend.

 

[ShiftKicker]

Welcome, Maggie. I have moved your post to its own thread.

I am sorry for the reason you have found yourself here, but know you are with friends. We have a very active community of caregivers here who are lovely people. I am sure you will find this forum a great resource and source of support and community.

~Fiona

 

[KimT]

Hi Maggie,

I'm so very sorry.

I correspond with a lady who has ALS and lives in Germany. If you would like to connect with her you can send me your e-mail address and I'll see that she receives it. She knows the system very well and, I'm sure, she can offer advice.

 

[wishmobbing]

Maggie, I'm so glad you found us this quickly after diagnosis!
The German forum is not very supportive or fun. This is the best place for information and understanding. Although the specialized knowledge about German healthcare and workings I had to amass never had an audience here.
I learned a lot about burocracy and ALS in the last year and I'd be happy to answer questions as they arise.

It's so much at the beginning, take it one step at a time, come here often to ask the smallest questions and just hang with us. T

If you tell us a bit more about your situation some will be happy to jump right in with what steps to take next.
How is your Andreas affected right now? Mobility, breathing, swallowing, speaking?

 

[lgelb]

Hi Maggie,

Lyme is a completely different entity. I have had it, whereas my husband had ALS. Studies have found no greater incidence of Lyme infection in ALS patients. Those who say they are easily confused are looking to make money off the hopes of others.

I'm sorry to welcome you here. We will help however we can. I am sure wishmobbing will be a great resource for you.

Best,
Laurie

 

[KarenNWendyn]

Welcome Maggie (How now, brown cow?). I’m so sorry to hear of Andreas’ diagnosis.

You’ve come to a great place for help and support. The information (“stickies”) at the top of the general forum contain useful information, as do so many of the threads you’ll find. It helps to try to stay ahead of the game. Post often and ask lots of questions, and we’ll try to be there for you.

 

[affected]

So sorry to welcome you here Browncow. You are with the best, and we will help you get through this xxx

 

[chally]

Welcome to the forum!

One day at a time is sound thinking.

Getting things you ll need before ya need them is also sound advice.

Breath

Chally

 

[Browncow]

Thank you all for your kind, comforting words and support, it brought me again to tears but that's not difficult at the moment.

 

[azgirl]

the shock and devastation of a new diagnosis will take awhile to get a hold of. Let the tears flow,. This group has been through it and will help you too.

these are amazing friends to help you find your way.

 

[Bestfriends14]

Hi Maggie,

I'm sorry to welcome you to this forum, but welcome nonetheless. This forum helped me immensely when I was trying to process my husband's diagnosis. The forum members are supportive, kind, humorous and knowledgeable.

It may feel like the walls are closing in on you, or the sky may be falling down, but each day the ability to process this crappy diagnosis will get a bit easier.

I'm glad you found the forum and hope that you will come here to get answers to questions you may have or support you may need.

Hugs to you.