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  #1  
Old 05-23-2012, 04:54 PM
Dave Maskalick Dave Maskalick is offline
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Join Date: May 2012
Location: I currently live in Wexford, PPA
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Smile Dealing with Cognitive Disability for 26 Years

My wife Kathy and I have been best friends for 37 years and we will be married for 32 years this month. We married in 1980 right after Kathy graduated from Duquesne University and we moved into married student housing at Indiana University, Bloomington IN, where I was in my first year of graduate school. In 1984 I defended for my PhD in Chemistry and started work in the biotechnology industry at a pharmaceutical company. Then in 1986 Kathy convinced me I should see a doctor because I was always so exhausted when I came home after a day either in the lab, at my desk, or in meetings with other scientists and management.

Well, after my exam I was diagnosed as either having MS or a brain tumor so I was sent to a neurologist. Then the neurologist saw antibodies in my spinal fluid and showed me, in the MRI of my brain, the spots of demyelination that confirmed MS rather than a brain tumor. Wow, not cancer, what a relief, hah, hah.

As a scientist I read about MS and as time went by I learned to deal with fatigue, memory loss, and brain fog which of course made it more and more difficult to solve challenging scientific problems I had to solve in my daily life at work. I was leading others in the development of novel processes for preparing new biotech medicines for clinical trials. I had always looked forward to the thrill of managing others in the lab and collaborating with others to accomplish good for the world. I kept working as hard as I could and I received a promotion in 1990.
I was taking Copaxone to treat my MS and I was using prism glasses for double vision caused by the MS, and I was replacing my dress shoes frequently since I kept dropping my toe as I walked and scuffing the toe of my shoes beyond repair. I forgot to say that my reaction time and my over reaction to sudden events led me into a couple auto accidents so I started taking the bus to work. Then, in 1998, I was working for my second promotion when in my performance review the memory loss and brain fog left me unable to answer some basic questions posed by management. I had not told my management about my MS until I was forced to do so to explain my poor performance review. After that I was asked to take long term disability.

After I obtained my PhD, Kathy was able to go back to school and get her MBA, after which she got a good job where she was traveling all around the Midwest to manage different offices. Except, just before I was asked to take long term disability the company where she had been building her career was purchased, but, she found a new job working at a small college where we lived.

A year after I took long term disability we moved back to Pittsburgh, PA where her parents still lived so we could care for them if they needed our help. We purchased a house large enough for the four of us and they eventually agreed to move in with us. This was good because her mom had a stroke while in our house which her dad thought was just a Charlie horse in her leg. But, because she was here and we had her rushed to the hospital, she recovered very well after we purchased some hearing aids for the profound hearing loss she experienced after the stroke. Then last month her mom fell in our kitchen after her hip broke, but we had her rushed to the hospital where they performed surgery to repair the socket in her hip and her foot that also broke when she fell. She has been recovering in a rehab home and will be back in our home again in a few days since she can climb a flight of stairs, and, with her walker she can walk a city block or more now.

Once in Pittsburgh we made some good friends at a University where Kathy had got a job when we moved back. The good friends helped us get involved with the Pittsburgh Symphony Orchestra where Kathy and I co-host dinners before some concerts and cocktail receptions to help symphony lovers meet some of the guest artists. We both have become very active in our alumni associations, Penn State for me, Duquesne for Kathy, and Indiana for both of us. I am secretary for the local chapter of the Penn State Alumni Association. Kathy is an alumni representative for the Music School at Duquesne University. Both of us have made some very close friends with some on the PSU Alumni Chapter Board while working many scholarship fund raising events with them.

Also after I had taken long term disability I continued reading the scientific literature, as I had been doing, to see how discoveries and inventions produced by researchers in universities could be commercialized to help make products people needed. So, Kathy and the friends she met when she started working in Pittsburgh encouraged me to start a business to facilitate the transfer of technology produced by universities into the corporate sector. So I started BiotecConnect, Inc. in 2001after building a web site and a mailing list. Well, as determined as I was to make a success of it, I had to dissolve BiotecConnect the end of 2011 since it wasn’t making any money. Encouraged by the friends who recommended I start the business I am now in the process of writing about all I have learned in the ten years BiotecConnect existed.

Fortunately, I found Lumosity, see http://www.lumosity.com, which I try to use daily to exercise my brain and improve my ability to concentrate, remember, and solve problems. It has helped improve my ability to compose my ideas and write about them.

I am currently writing Share Knowledge to Sustain Ourselves in the form of an Introduction and eight chapters.
Introduction - Sustaining Commerce, Humanity and Life by Exchanging Knowledge
1 - Basic Human Needs Products
2 - Knowledge Exchange Commerce
3 - Basic Human Needs Market Satisfaction.
4 - Knowledge Producer Organizations.
5 - Knowledge Consumer Organizations.
6 - Sustainable Knowledge Exchange.
7 - Sustainable Economy Evolution.
8 - Political and Ethical Issues WRT Property Rights While Evolving into a Sustainable Society.

I intend to publish each chapter, or portions of chapters, as papers in the appropriate periodicals.

Over the last 26 years I have been experiencing a slow progressive form of MS, and with Kathy’s support, I too have refused to let the MS take my life away from me. I too try to exercise at least every other day by doing my half hour of stretches and sit-ups and push-ups and half hour on the Elliptical burning about 200 calories and going about 1 mile in 30minutes while keeping my heart rate below 130 to burn more fat than carbohydrates. I still am able to mow our yard and tend my flower and vegetable gardens. I just moved five cubic yards of mulch this past weekend. Thank goodness it was so cool that we even had a bit of snow in the air, because the heat really saps my energy.

I look forward to sharing my experiences with other active MSers as I learnmore from the experiences of other Active MSers!
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protchem@yahoo.com
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  #2  
Old 05-25-2012, 09:11 AM
tomten tomten is offline
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I'm a librarian, have secondary progressive M.S., seem to be near your age, and I write professional reviews. What are the biggest challenges you face as you write and read? Do you have strategies for overcoming these deficits that you can share?
Thanks.
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  #3  
Old 06-11-2012, 11:34 PM
Dave Maskalick Dave Maskalick is offline
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Join Date: May 2012
Location: I currently live in Wexford, PPA
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Default Overcoming Cognitive Deficits

Quote:
Originally Posted by tomten View Post
I'm a librarian, have secondary progressive M.S., seem to be near your age, and I write professional reviews. What are the biggest challenges you face as you write and read? Do you have strategies for overcoming these deficits that you can share?
Thanks.
tomten:

I tell people that my short term memory today is measured in nanoseconds. I have been writing things down to help retain my thoughts and information I discover when reading. Today I make sure that I save my written memories on a computer where I have my files thoroughly organized so that which I enter doesn't get lost. I bet with your skills as a librarian you could develop a filing system far superior to mine to retain your thoughts and information you discover.

Composing text for a paragraph, let alone a chapter, or article, becomes an exercise in prioritizing the points I wish to communicate and the audience I wish to reach. I will create an outline before I start writing. Frequently I will modify the outline for any number of reasons, but it is still useful to help clarify my thoughts for myself when I'm in a brain fog.

Of course, when I am fatigued I forget to write things down so they are forgotten, and brain fog makes it difficult to express ideas in a simple manner. Thus, I take lots of naps during the day and get a good nights sleep.

I do not believe that Copaxone or Avonex treatments helped with my cognitive problems as much as the monthly Tysabri treatments I have been receiving for the last twelve months.

I apologize for the delay in my reply to your question. I haven't been on the Active MSers site since I posted my story. I'm bad.

I hope you can use some of my experience dealing with overcoming cognitive deficits.

What has been your experience?

Dave M.
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protchem@yahoo.com
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  #4  
Old 06-11-2012, 11:48 PM
Dave Maskalick Dave Maskalick is offline
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Join Date: May 2012
Location: I currently live in Wexford, PPA
Posts: 3
Default Overcoming Cognitive Deficits

Quote:
Originally Posted by Dave Maskalick View Post
tomten:

I tell people that my short term memory today is measured in nanoseconds. I have been writing things down to help retain my thoughts and information I discover when reading. Today I make sure that I save my written memories on a computer where I have my files thoroughly organized so that which I enter doesn't get lost. I bet with your skills as a librarian you could develop a filing system far superior to mine to retain your thoughts and information you discover.

Composing text for a paragraph, let alone a chapter, or article, becomes an exercise in prioritizing the points I wish to communicate and the audience I wish to reach. I will create an outline before I start writing. Frequently I will modify the outline for any number of reasons, but it is still useful to help clarify my thoughts for myself when I'm in a brain fog.

Of course, when I am fatigued I forget to write things down so they are forgotten, and brain fog makes it difficult to express ideas in a simple manner. Thus, I take lots of naps during the day and get a good nights sleep.

I do not believe that Copaxone or Avonex treatments helped with my cognitive problems as much as the monthly Tysabri treatments I have been receiving for the last twelve months.

I apologize for the delay in my reply to your question. I haven't been on the Active MSers site since I posted my story. I'm bad.

I hope you can use some of my experience dealing with overcoming cognitive deficits.

What has been your experience?

Dave M.
tomten:

I forgot to mention that regular physical exercise has been very important to me for sustaining my cognitive health, and, the cognitive exercises I found on the web site lumosity.com also have helped me to restore and retain some of my cognitive abilities which have been degraded by the MS.

Best wishes for success,

Dave M
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protchem@yahoo.com
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  #5  
Old 06-17-2012, 11:23 PM
AngieBee AngieBee is offline
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Join Date: Jun 2012
Location: Des Moines Iowa
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Thank you so much for the link! I am looking forward to checking it out. Your story is inspiring and I look forward to your writings.
It's lovely to hear of supportive couples
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  #6  
Old 07-07-2012, 01:29 AM
Niko Niko is offline
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Join Date: Feb 2012
Location: Canada
Posts: 48
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I take a ton of pictures every time I go out and spend time with friends, or just anywhere with me. My friends think it's all just for Facebook- nope! My brain. It's my memory of events. I also have a notebook and I write lists all the time. Being a university student, it's tough doing any school-related things, especially exams. I'm hoping that afterwards I will be able to do the things I really love, and just adapt my MS to my lifestyles, just like you after 26 years!

Thanks for the encouraging note
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