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sassy

Distinguished member
Joined
Apr 22, 2018
Messages
113
Reason
CALS
Diagnosis
02/2018
Country
US
State
RI
City
East Greenwich
My husband was formally diagnosed with ALS in February of 2018, although he has had foot drop for over two years. We have been told his progression is slow and did get a second opinion at a highly regarded ALS center. I think we were both afraid to ask many questions about his progression but are so very, very thankful it appears to be progressing slowly at this time.

I just wanted to thank everyone on this site for helping us as we lurked over the past year. I continue to be amazed at the knowledge and kindness offered to so many CALS and PALS.
Sassy
 
Hi Sassy,

I'm so sorry you have to be here but your husband's progression does sound very slow and there are so many great doctors in MA.

Feel free to ask questions, vent, share stories, and whatever else you need that will help us help you.
 
My husband’s first symptom was dropfoot as well. Welcome Sassy.
 
Welcome Sassy I started with foot drop too. I hope progression continues to be slow.
Wendy
 
Welcome, Sassy; sorry you have to be here. Lurk any time, and reach out whenever it helps.

Best,
Laurie
 
I also started with foot drop. You’re in good company. Sorry to have to welcome you to the club.
 
Sorry to welcome you here, Sassy. You will not find a better, more supportive group of people. My husband, too, had nearly two years of drop foot before DX. May 30th will be our 1 year anniversary of diagnosis. Please feel free to ask any questions you may have.

Hugs
 
Welcome Sassy, I'm sorry for what brings you here. May I suggest that you contact Compassionate Care ALS ( CCALS ), they are a nonprofit in West Falmouth, MA and can be a great support in this journey. They are wonderful people and really get it, have a good loaner closet and provide great emotional support. Kate
 
I'm sorry to be welcoming you here, Sassy, but you are certainly most welcome. As you know already, this is a wonderful place for information, encouragement, support and friendship.
Becky
 
Lenore and Karen and also Sassy.

"My husband’s first symptom was dropfoot as well. Welcome Sassy."

My wife's first noticeable symptom was foot drop. We did not know it was ALS at the time, only later.

Neither of her many doctors, and there were many, even hinted at ALS. They each seemed, in hindsight, to be drawing their diagnosis from their own particular specialty.

Why are these doctors not aware of this connection to ALS?

I guess this angers me a little. If we had known early on we could have avoided so many tests and therapies that really hindered our quality of life.
 
Ernie, your question of why so many doctors seem unaware of connection between foot drop and ALS is a good one. So as not to hijack this thread, I’m going to open a new thread in the general forum so members can hash this one out.
 
Welcome Sassy to the drop foot club! I'm relieved to hear of the slow progression. You have time to prepare for everything and can still get the most out of being able to travel easily. Don't do too much homework right away, when a new symptom arises you'll find help here pretty much 24/7.
 
Hi Sassy,

My husband just got diagnosed May 23, 2018. His symptoms are bilateral arm/hand weakness. His dx: BRACHIAL AMYOTROPHIC DIPLEGIA. This is slow progressive variant of ALS. Also commonly known as Man in a Barrel disease. Everything works except his arms/hands.

So glad to find this support group and I am unable to attend any type of counseling/support group as I need to work during the day and take care of hubby rest of the time.

Sorry we both have to be here, but know others are going through this as well and they have some wise words of wisdom!
 
Wishing your husband continued slow progression. The support and knowledge from this forum is so comforting following diagnosis-you are not alone....
 
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