Emanol
Active member
- Joined
- Apr 3, 2018
- Messages
- 67
- Reason
- Loved one DX
- Diagnosis
- 09/2017
- Country
- SP
- State
- NY
- City
- Lugo
Dear everyone,
I hope this email finds you well, given the circumstances.
I posted a few messages some years ago, when my father was first navigating the path to diagnosis and the immediate aftermath. I have always been amazed at the kindness and helpful information that I found here. If you recall, my father had a case of mainly UMN signs and was diagnosed with several different diseases after the doctor landed on the spectrum of Mill's syndrome / PLS / UMN dominant ALS. I am happy to say that some years since the first signs back in 2016, my father still enjoys relative independence and, luckily, has not had any issues with breathing as of yet. He is still very rigid and his speech and swallowing have worsened, but there are no signs of atrophy or weight loss or breathing difficulties yet.
I am writing to you with a specific question about familiar ALS. In particular, I came back to the forum because a year ago a cousin of my dad on his dad's side was diagnosed with atypical parkinsonism, and it seems it has been progressing quite quickly (even if his neurologist is certain that it is a form of parkinsonism and nothing else). Similarly, as I once posted, another cousin on the same line was diagnosed with Multi-Systems Atrophy, yet another form of parkinsonism.
I came here because I was curious if people had any thoughts about this coincidences. Could they be related to some genetic factor? My father has 20 cousins on that side, so it is far from a 50/50 situation, but three cases seem a lot given the rarity of these diseases. Similarly, I have always been puzzled by my dad's strange ALS, which appears with marked rigidity and no atrophy or weakness (and which was initially misdiagnosed as atypical parkinsonism as well). Does anyone know any research on the coincidence of ALS and parkinsonisms? How do you think that I should understand the parkinson-like symptoms of my dad's MND? I am not really looking for anything specific, but just wanted to share the situation with the forum in general just in case someone had any thoughts.
Thank you for your attention. I hope everyone is managining as well as possible.
Best,
Emanol
I hope this email finds you well, given the circumstances.
I posted a few messages some years ago, when my father was first navigating the path to diagnosis and the immediate aftermath. I have always been amazed at the kindness and helpful information that I found here. If you recall, my father had a case of mainly UMN signs and was diagnosed with several different diseases after the doctor landed on the spectrum of Mill's syndrome / PLS / UMN dominant ALS. I am happy to say that some years since the first signs back in 2016, my father still enjoys relative independence and, luckily, has not had any issues with breathing as of yet. He is still very rigid and his speech and swallowing have worsened, but there are no signs of atrophy or weight loss or breathing difficulties yet.
I am writing to you with a specific question about familiar ALS. In particular, I came back to the forum because a year ago a cousin of my dad on his dad's side was diagnosed with atypical parkinsonism, and it seems it has been progressing quite quickly (even if his neurologist is certain that it is a form of parkinsonism and nothing else). Similarly, as I once posted, another cousin on the same line was diagnosed with Multi-Systems Atrophy, yet another form of parkinsonism.
I came here because I was curious if people had any thoughts about this coincidences. Could they be related to some genetic factor? My father has 20 cousins on that side, so it is far from a 50/50 situation, but three cases seem a lot given the rarity of these diseases. Similarly, I have always been puzzled by my dad's strange ALS, which appears with marked rigidity and no atrophy or weakness (and which was initially misdiagnosed as atypical parkinsonism as well). Does anyone know any research on the coincidence of ALS and parkinsonisms? How do you think that I should understand the parkinson-like symptoms of my dad's MND? I am not really looking for anything specific, but just wanted to share the situation with the forum in general just in case someone had any thoughts.
Thank you for your attention. I hope everyone is managining as well as possible.
Best,
Emanol