Strange family history

Emanol

Active member
Joined
Apr 3, 2018
Messages
63
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
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Parkinsonism ( not Parkinson’s Disease) is seen in ALS sometimes as it is in some other neurologic disease. It is a symptom cluster rather than a separate disease

I don’t know that the MSA - parkinsonian type diagnosis and whatever the other person has can be attributed to a common cause- their mutual grandparent plus all three relevant parents would have had to be carriers and apparently asymptomatic?

I haven’t heard similar history from any of my FALS group.

if everyone is correctly diagnosed I am not sure what you can do about it at this point in time. Maybe someday they will find genetic contributors to neurodegenerative disease. Not autosomal dominant but more tendencies given enough stressors
 

Emanol

Active member
Joined
Apr 3, 2018
Messages
63
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
City
Lugo
Thank you for writing! Forgot to mention that the three of them have always suffered from very significant migraines, unlike other people in the same family. Maybe connected as well?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,153
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
People with migraine in midlife, esp. if with aura, are more likely to develop Parkinson's, studies have suggested.
 

morleyde

Active member
Joined
Apr 4, 2018
Messages
32
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles

Emanol,

I have PLS and I have a cousin that developed Parkinson in his early 40's. I asked my Dr at Mayo if there was any connection and he said no. I am very rigid, especially in my legs. I jokingly say I walk like Frankenstein. My spasticity Dr showed me the difference between how a person with spasticity walks and how a person with Parkinson walks. Very different if you know what to look for. Hope this info helps.
Joe
 

Carolina76

New member
Joined
Jul 28, 2020
Messages
3
Reason
CALS
Diagnosis
07/2020
Country
US
State
NC
City
Kings Mountain
My husband was diagnosed with ALS in July 2020. Although no one that we are aware of in his family has had ALS, all of his mother's siblings had Parkinsons disease except for his mother.
 
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