Facing the Cognitive Challenges of Multiple Sclerosis
Guest Speaker
Jeffrey Gingold, Author
May 15, 2006
Tonight's Guest Speaker is Jeffrey Gingold, author of ""Facing the Cognitive Challenges of Multiple Sclerosis.""
Mr. Gingold was a practicing attorney when he was diagnosed with MS.
Since retiring from the his practice and his teaching position, Mr. Gingold has volunteered skills honed in his profession to benefit people with MS.
These include lobbying to fund an early diagnosis program for indigent woman and an Income Tax ""Check-Off"" list for the MS Society's home accessibility and independence program.
As recognition of his work he received his chapter's Volunteer of the Year award in 2003.
Cognitive symptoms due to MS have had a major impact on Mr. Gingold's life.
At the time he could find very little material to help the patient experiencing such difficulties.
For this reason he wrote his book to educate, reassure, and inspire those of us who suffer with cognitive issues as a result of MS.
Tonight I will be interviewing Jeffrey Gingold about his experience with MS cognitive symptoms.
After the interview we will offer members a chance to ask questions or make comments.
I will now begin the interview with Jeffrey Gingold.
First of all welcome and thanks for coming Jeffrey
She types fast!! Thank you all for joining tonight. If there are bad typos, then our cat probably jumped on my lap......
:)
Can you tell us what cognitive symptoms first came to your attention?
As a litigator, I started to have difficulty processing routine information ...
I could not follow conversations, my own notes or remember telephone messages
How did you handle this at first?
I tried to slow down, but clients, judges and other attorneys were not that understandiing....
my secretary tried to run interference for me with clients needs and reminders of appearances, etc.
What did you tell your partners?
I kept in quiet for about a year or so, but my isolation became obvious.....
I didn't want them to think that they were doing something wrong
I called a meeting with the partners and spilled the MS news
What was the response?
Shocked, but sympathetic, they had children too and were interested in protecting clients and balancing health concerns. They were very supportive....
However, they had no idea about MS and what was actually happening to me.
You have since retired. Why is that?
I was DX in 1996... and retired five years later.
Let me explain..........
I began to experience episodes of mental blankness.....
I would lose my presence of thought and was unable to recall what I had just said or what to say next.....
Tonight's guest speaker is ""Jeffrey Gingold."" We are using protocol. Please do not type unless called upon. If you have a question type a ? for a comment type a !. You will be called upon in the order of your ? or !
Sometimes, it went as far as not recognizing faces, places and points of discussion......
It wasn't that the information was lost, rather it took longer to recall, especially under stressed situations.
What did you tell your children about the difficulties you were having?
Very little at first....
They learned about the numbness in my limbs and why I had slowed down, avoided heat, etc.....
But they didn't understand why I didn't like to be interrupted and have my thoughts tossed off track....
That showed in the form of anger and shutting down because I couldn't keep up with multitasking or multiple conversations....
Since the book and I have been speaking about cognitive MS challenges, they understand - one at a time.
And has your wife been supportive?
Far more so that I would have ever imagined......
I believe that folks with MS and their support person have an untapped and amazing ability to step forward and help.....
When my tremors affected my ability to inject the meds, she offered to do for me.
So you have physical symptoms, too, what are they like for you?
I have numbness in one leg.....
optic neuritis in one eye, numbness in one hand and have no tolerance for heat and humidity...extreme fatigue...
all rather classic under the cognitive stuff began to occur.
What percentage of folks with MS have cognitive symptoms?
A recent study noted about 65%, although I believe it may be more....
It is difficult for people to understand or admit that they may also be experiencing thinking fatigue
Before we go on to talk about your writing and current projects, how have you dealt with these symptoms...
what do you do about them?
Talking to my wife was the first big step....
Then getting referred to a neuropsychologist with expertise on MS was key.
And on a daily basis, what do you do to compensate?
I slow down and schedule mental activities for my best moments....
If people think about it, they could probably state what part of the day they are sharpest or have the most energy....
So I try not to write bills or enter complicated discussions when I cannot focus.
Ok, you've written a wonderful book, Facing the Cognitive Challenges of Multiple Sclerosis...
and it details your experiences with cognitive issues...
what did you want to accomplish by writing this book?
I wanted to candidly share being on the inside of cognitive challenges and setbacks....,
I have often compared it to being seated in a mental wheelchair, unable to think and respond as fast as may wish to...
If I opened myself up, my experiences, bluntly, then may it could educate others that they are not losing pieces of their mind.....
Then they might find proper DX of the cognitive issues, beyond the physical ones and receive treatment and coping strategies.
And for that, we thank you...
Have you written any other MS-related articles?
Yes, I have an article that was just published in MS in Focus....
That is via the MS Foundation in Florida....
I have also written articles for the NMSS dealing with advocacy.
Do you have any current legislative projects coming along?
Yes, we are working on legislation that would provide a tax deduction for the cost of caregivers, in the home....
a matter that is very common for MS patients living at home, often with the assistance of family members.
That'd be super! Jeffrey, you recently taped a guest spot...
on the Montel Williams show. What did he want to accomplish through the show, and when will it air?
He wanted to show the faces of MS....
This included a 8 yr. old girl who was DX when she was 4.....
and a former ballet dancer who has MS and was recently on Extreme Makeover, Home Edition.....
and myself and the book, discussing cognitive symptoms being silently faced by MS patients....
The show will air on Friday July 28th, check your local listings for times and to confirm that it is not a rerun.....
By the way, Montel was a gentleman and even made my wife comfortable enough to talk in front of cameras and a live audience....
we did not like the make-up, but it was necessary I am sure.
A comfortable wife is always a plus. And where is your book available?
Amazon, Barnes and NOble, Borders and it has appeared in bookstores a few weeks ago......
I am donating 20% of royalties to the NMSS. Using the disease to fight the disease.
Before I open it up for questions from our members, I have one last question for you myself...
yes
How has acknowledging MS cognitive challenges affected your life?
It has relaxed me, by not having to mask and cover up so much confusion and delay in recognition or thinking....
Those who know are more patient with me that they were before I told them. ....
It is only fair to give them the information and tools to help me function at my best, whatever that may be on any given day....
And in a twisted way, I feel better off because what I thought were priorities, were not.
Okay, thanks Jeffrey! WriteOp can call on members with questions or comments now.
Guest1, you may ask your question now.
I was diagnosed with MS when I was 23. Am 41 now and have had very few episodes. I am very lucky, But a few years ago I noticed that I was having trouble remembering simple things like people's names, things that were said in a meeting. My question is, how do I know if it is really the MS and not age?
Good question.....
I don't know if 41 would be a defining moment for the slow down of informaiton.....
but many MS trained neurologists and neuropsychologists would say that you are describing a classic cognitive symptom....
I always had an amazing memory and now I don't anymore. But since I have had such few symptoms in the 20 years since I was diagnosed that I am having trouble coming to terms with this.
now whether that means that it is serious or isolated, you should talk with a doctor and possibly be evaluated if it is at the point that it interferes with your life, work, etc.
It doesn't mean that the memories are lost.....
OK. Thanks.
They just may be jammed up at times, especially if you are stressed or overwhelmed, overheated....
it is different for everyone [sound familiar] but it is useful to discuss it with your caregiver and doctor....
if they don't know what you are talking about, then gently hand them a copy of the book...it should help.
I will. Thanks for your help.
Dean, you may ask your question now.
Has your wife done any work with other caregivers helping them understand about cognitive symptoms?
Other then discussions through NMSS functions, no........
she teaches 4 yr. old kindergarten and has the patience of -
Thanks. We have time for one more.
It would be a good idea to suggest it to her, now that the subject is out in the open,
Guest2, you may ask your question now.
I am a creative director for a manufacturing company..
Do you think that physical fatigue affects your cognitive fatigue?
Definitely, I believe that the physical and cognitive can play off each other..
and it is not possible to determine what is causing what to occur first.
Jeffrey, thank you so much for your wonderful presence and the information you've given us.
I am afraid of being fired... am looking for solutions...
Thank you
It was a pleasure and hopefully helpful.
You've shed a new light on issues that many of us don't discuss, thank you for freeing us up to this discussion.
I want to encourage people to check out my book review on Jeffrey's book - it is a great read.
Not my review but Jeffrey's book is a great read!!
THANK YOU JEFFREY.........
Thank you again.
LOL! I think both are accurate WriteOP :)
Thanks GraceOP. Semantics, semantics
Thank you Jeffrey, you've been very enlightening and we appreciate your candor with us this evening.
Jeffrey, are you planning another book?
Yes,....
that is excellent news! Keep us informed.
it is a compendium of cognitive and physical coping strategies.
Excellent - can't wait to read it!
sounds incredibly helpful Jeffrey!
There you go, Guest2!
Thank you, will order it tonite!
Have a title in mind Jeffrey?
The working title does not give justice .,...
That's OK - just curious.
Coping Strategies for Cognitive and Physical Challenges of MS: A patients' compendium.
Long! :)
It's the content that makes it worthwhile
Something like that, but much shorter.
Working titles are just that.
Good information
Thank you so much for your time - From Montel to MSWorld!
I'm going to be signing off for tonight. Thank you again, Jeffrey, for a terrific chat.
Thank you too!!
Take care all
Goodnight
GOOD NIGHT
signing off
TC
Yes, Thank you! We thoroughly enjoyed your talk tonight and look forward to reading more from you!
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