BeautifulDay
Senior Member
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Progressive Cognitive Difficulties in Adult Patients with Mitochondrial Disease
Association of British Neurologists (ABN) joint meeting with the Royal College of Physicians (RCP), London, 23–24 October 2013
"Conclusion: These findings demonstrate widespread cognitive difficulties that can undermine independence and quality of life in patients with mitochondrial disease, and emphasise the need to incorporate cognitive testing into clinical practice, in order to ensure that appropriate care is provided. These findings serve as an informative guide for assessing the true nature and severity of cognitive disability in patients with mitochondrial disease and preface future studies assessing speed of progression and final cognitive outcome, whilst providing clues to the role of mitochondrial dysfunction in other neurodegenerative conditions and age–related cognitive decline."
http://jnnp.bmj.com/content/84/11/e2.43
A decade ago, I started mixing up words. For example, meeting a new person I once said "Nice to foot you". Then it started happening all the time. I mentioned it to my neurologist and was told to decrease my stress and get more sleep.
Then I started forgetting things. I'd lose focus. I'd enter a room and forget why I was there. I'd ask the same question over and over again and forget that I was already told the answer. I owned my own business at the time and met a client one day and over the weekend we were at an event and the client came over to talk business and I didn't remember anything about her or meeting her previously. She thought I was nuts. My husband took me over to the emergency stairs where I had my first cry of "Oh My God, I'm losing my mind".
My business went under because I couldn't remember anything or what I was doing. I went into the business because it was supposed to be just something I could do in spare time and work around my Chronic Fatigue.
Then I started forgetting my kids names, my husband, and I went back to the neurologist and said I'm forgetting things. Major things. Again she said reduce stress and get more sleep.
Not once did she mention cognitive testing. Instead she assumed fatigue and memory lapses and my odd symptoms meant hypochondriac. So I went to a different city, New York City, where I underwent cognitive testing at a top university. They found severe cognitive loss.
My doctor explained that people with high cognitive reserve who have memory loss often aren't taken seriously until they are far along. So while I looked well (with the exception of my malar butterfly mask) and I could pretend to keep up with a conversation - ask me about that conversation 15 minutes later and it was gone.
I learned to use cognitive helpers from a 5 foot calendar in the kitchen, notes everywhere, alarms on my phone, my husband GPS'd my phone, etc.... I was given a prescription of Donepezil. I started doing research and found the MIND diet. It really helped. Now I can have music on in the house and keep up with conversations (well some of the time).
But I still have bouts of words getting mixed up. I still need to use the calendar, etc.... I have severe amnesia episodes regularly where I can't remember an event. Luckily people fill the events in for me.
If I write something here, it has probably taken me 5 times as long as you think because I have to keep rereading what I wrote to remember the path I'm taking here.
My doctor calls these episodes as being due to "attention". It's not that I'm not paying attention. It's that we have these buckets of short term memories happening and they get dumped into long term memory buckets. He says my short term memory bucket has developed holes. I'm doing a horrible job of explaining it the way he does.
Since the memory issues developed I also have ADHD and OCD. I can't focus on anything my brain doesn't want to focus on. When my brain wants to focus on something, it's very hard to walk away. I've walked away from conversations with friends without explaining because it's just too painful to be subject to whatever the conversation was (despite the fact that it's rude and something that actually should be important to me). I was in church the other day watching our 8 year old daughter sing in the choir. It was so difficult to sit there during the sermon and readings. I was clinging by a string from walking out. It's a little karma getting me back for forcing our son (who later we learned was high functioning autistic spectrum with ADHD and OCD) to sit in church for a few years.
In the last year, when we were diagnosed with Mitochondrial Disease, it all made sense.
Going back to cognitive testing. Anyone who thinks they are having cognitive loss should get tested. My memory loss neurologist can't believe my past neurologists didn't recommend cognitive testing for me earlier when I mentioned losing my memory. He said that's the time to have a test so that continued memory loss can be documented by comparing test results over time.
Association of British Neurologists (ABN) joint meeting with the Royal College of Physicians (RCP), London, 23–24 October 2013
"Conclusion: These findings demonstrate widespread cognitive difficulties that can undermine independence and quality of life in patients with mitochondrial disease, and emphasise the need to incorporate cognitive testing into clinical practice, in order to ensure that appropriate care is provided. These findings serve as an informative guide for assessing the true nature and severity of cognitive disability in patients with mitochondrial disease and preface future studies assessing speed of progression and final cognitive outcome, whilst providing clues to the role of mitochondrial dysfunction in other neurodegenerative conditions and age–related cognitive decline."
http://jnnp.bmj.com/content/84/11/e2.43
A decade ago, I started mixing up words. For example, meeting a new person I once said "Nice to foot you". Then it started happening all the time. I mentioned it to my neurologist and was told to decrease my stress and get more sleep.
Then I started forgetting things. I'd lose focus. I'd enter a room and forget why I was there. I'd ask the same question over and over again and forget that I was already told the answer. I owned my own business at the time and met a client one day and over the weekend we were at an event and the client came over to talk business and I didn't remember anything about her or meeting her previously. She thought I was nuts. My husband took me over to the emergency stairs where I had my first cry of "Oh My God, I'm losing my mind".
My business went under because I couldn't remember anything or what I was doing. I went into the business because it was supposed to be just something I could do in spare time and work around my Chronic Fatigue.
Then I started forgetting my kids names, my husband, and I went back to the neurologist and said I'm forgetting things. Major things. Again she said reduce stress and get more sleep.
Not once did she mention cognitive testing. Instead she assumed fatigue and memory lapses and my odd symptoms meant hypochondriac. So I went to a different city, New York City, where I underwent cognitive testing at a top university. They found severe cognitive loss.
My doctor explained that people with high cognitive reserve who have memory loss often aren't taken seriously until they are far along. So while I looked well (with the exception of my malar butterfly mask) and I could pretend to keep up with a conversation - ask me about that conversation 15 minutes later and it was gone.
I learned to use cognitive helpers from a 5 foot calendar in the kitchen, notes everywhere, alarms on my phone, my husband GPS'd my phone, etc.... I was given a prescription of Donepezil. I started doing research and found the MIND diet. It really helped. Now I can have music on in the house and keep up with conversations (well some of the time).
But I still have bouts of words getting mixed up. I still need to use the calendar, etc.... I have severe amnesia episodes regularly where I can't remember an event. Luckily people fill the events in for me.
If I write something here, it has probably taken me 5 times as long as you think because I have to keep rereading what I wrote to remember the path I'm taking here.
My doctor calls these episodes as being due to "attention". It's not that I'm not paying attention. It's that we have these buckets of short term memories happening and they get dumped into long term memory buckets. He says my short term memory bucket has developed holes. I'm doing a horrible job of explaining it the way he does.
Since the memory issues developed I also have ADHD and OCD. I can't focus on anything my brain doesn't want to focus on. When my brain wants to focus on something, it's very hard to walk away. I've walked away from conversations with friends without explaining because it's just too painful to be subject to whatever the conversation was (despite the fact that it's rude and something that actually should be important to me). I was in church the other day watching our 8 year old daughter sing in the choir. It was so difficult to sit there during the sermon and readings. I was clinging by a string from walking out. It's a little karma getting me back for forcing our son (who later we learned was high functioning autistic spectrum with ADHD and OCD) to sit in church for a few years.
In the last year, when we were diagnosed with Mitochondrial Disease, it all made sense.
Going back to cognitive testing. Anyone who thinks they are having cognitive loss should get tested. My memory loss neurologist can't believe my past neurologists didn't recommend cognitive testing for me earlier when I mentioned losing my memory. He said that's the time to have a test so that continued memory loss can be documented by comparing test results over time.
