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missbelle

Member
Joined
May 10, 2016
Messages
28
Reason
Loved one DX
Diagnosis
05/2016
Country
CA
State
Ontario
Hi! I posted a couple of months ago when my mom was newly diagnosed. I was in total denial, completely desperate for answers – but have finally come to terms with this. She is still in the process of being tested, in fact in October has 6 hours worth of tests booked with the neurologist – any idea what these might entail? She's already had bloodwork, ENG, MRI, 2 swallowing tests... I think that's it. I guess maybe they just want to re-do all of these things to see if there are any new developments/progression and to officially confirm? Anyone know? She saw the specialist on Friday, who is proceeding with her based on an ALS diagnosis, but there have been no treatment options given, only more tests. I guess it is a long process to rule everything out and to find out exactly what is going on and what exactly she will need for treatment.

Anyway, there are no new symptoms and she has not gotten any worse. Her speech is still very slurred and she is still having trouble swallowing, but just has to eat a bit slower than the rest of us. She's able to walk as usual, lift things (was helping my dad lay out stones in the yard last weekend) and is in good spirits. She's on anti-depressants which help greatly. My dad is still in denial which is breaking my heart. They have a very good family doctor who was open to Lyme testing and may put my mom on the antibiotics to treat it just in case (and to ease my dad's mind.) He is very helpful and sweet with them. Unfortunately, the actual specialist is much colder and I think they will try to get a second opinion/find a different one who is a little less harsh.

I've been preparing myself for what's to come. I'm still frightened and heartbroken but am finally able to accept this and will be strong for her and for my dad! I've already got support systems set up, and have been educating myself as much as possible about the disease. Thank you all for sharing your stories/experiences which have helped immensely.

Anyway, she's doing very well! She was just dancing with me and singing to Elvis on Friday night! My dad and her find something fun to do together almost every day! As long as she's not getting worse (yet, though I know what's to come, and will deal with it stage by stage) then I can handle this as it goes. We are taking it day by day. Spending lots of time together while she is still able to get out and about! Just enjoying this life we have, while we have it.

PS. Have any of you watched the new documentary about a very interesting man with ALS on Netflix called "Transfatty Lives?" It's quite funny & inspiring – although dark at times, of course. Highly recommend it! (TransFatty Lives if you're interested.) If you've seen it, let me know what you think!
 
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