My concerns were confirmed

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MF4129

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Sep 6, 2021
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Loved one DX
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I initially posted back in September under the “could this be als” category regarding concerns I had about my mom and her slurred speech. Unfortunately, my concerns were confirmed (after seeing several neurologists- some who did not seem well versed in MND) and my mother has been diagnosed with MND. She had her 2nd opinion last week at Mayo. Her 1st als specialist diagnosed her with progressive bulbar palsy. Mayo diagnosed likely bulbar als. The reason they haven’t fully committed to bulbar als is that her most recent emg only shows changes on the left side of her tongue and no where else. She has had progressive difficulty with speech and swallowing. It’s been such a anxiety filled, stressful, heartbreaking last several months. I feel emotionally worn out and yet I know it’s just the beginning of the journey.
 

Nikki J

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14,116
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I am sorry it turned out that way and sorry the diagnosis took a while. I hope she has a slow progression. If she has enough voice to bank encourage her to do so but at least record what she has for yourself. I did not with either my mother or sister and I regret
it

previous thread Concerned daughter
 

Firefighter58

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I feel so sorry for you folks, I have two power wheelchairs, one suppled free by ALS Canada and the other I bought used for $500.00 on kajiji for our cottage. The one from ALS took a week to get and it a very good machine .
 

MF4129

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Joined
Sep 6, 2021
Messages
8
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Loved one DX
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00/0000
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Hi Nikki. She has the equipment for voice banking so will hopefully start working on that soon. She is just so overwhelmed right now with the diagnosis and decisions she has to make. It’s been really difficult as I am sure everyone here knows.
 
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