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Coping with cognitive loss- need ideas
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An_204875 posted:
I am 34 years old and was diagnosed in 2008 with MS. It has affected me only cognativly to the point I have lost my job and now my marriage is being challenged. My husband grows very frustrated with my lack of abilities. Does anyone have tips or ideas how to cope successfully with that frustration?

Thanks
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swampster1952 responded:
Hello no-name,

I get the frustration that comes with cognitive dysfunction! I have that too (along with a boat load of other symptoms).

The only way i have found to deal with it is to realize that I can no longer do things like I used to do. I have had to find other ways to accomplish the same things. Some things I just can't do any more.

I have come to accept that my cognitive faculties are no longer as sharp as they used to be and there is nothing I can do about it except to adapt the best I can.

I wish I had something that would help you more.

Best,

Dave
 
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mmthlvr replied to swampster1952's response:
I try to laugh off some of the stupid things I do. For example, today I answered the phone "service this is tomorrow". my name is Tammy:) Sometimes it's hard to laugh but I don't know what else to do. It can be very frustrating & embarrasing.

Like Dave I wish I had more to offer you, just know your not alone.

Hugs,
Tammy
 
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Jeffrey A Rumbaugh, MD, PhD replied to mmthlvr's response:
For patients with MS and cognitive concerns, formal neurocognitive testing can be very beneficial for multiple reasons. First, it can help determine whether there really is any affect on cognition from the multiple sclerosis; people with MS (and without MS) can have cognitive complaints for lots of reasons, not necessarily due to MS. Second, it will also serve as a baseline for possible repeat testing in the future if concerns for (worsening) cognitive effects of the disease arise later. Thirdly, if cognitive problems are revealed by the testing, it will serve as a guide for cognitive rehabilitation to focus on specific cognitive spheres which are most greatly affected. Also, Aricept or similar medications may have some benefit for the neurocognitive dysfunction of MS, based a few small, but reasonably well-designed studies.
 
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OTH1958 responded:
I also get the same frustrations from my wife. She realizes that it's not me, but the disease. But she also doesn't want me to give up, and MS to become a crutch. Since MS is as individualized as the people that are diagnosed with it, things I have done may not be much use to you. One thing I can share is you can try to live with MS, or like me, to live in spite of it. I will be praying for you.

God's love

Owen
 
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cheetoh3 responded:
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1272
Things which exacerbate the cognition process are:

  • Fatigue
  • Sleep problems.
  • Depression
  • Stress
  • Heat
  • External distractions.
Therefore it is worth trying to avoid these as much as possible or keep them to a minimum.
Many people take drugs to alleviate MS pain or spasms. These are known to impair cognitive function, so bear in mind on a bad day just what drugs you have taken.
Here is a list of coping strategies to try
1. Keep a notepad to hand always and make lists, e.g., shopping lists, lists of things to do, and so forth.
2. Use Post- it Notes "122 to write reminders and put them in obvious places in the room
3. Use a calendar for appointments and reminders of special days.
4. Organize your environment so that things remain in familiar places.
5. Carry on conversations in quiet places to minimize environmental distractions.6. Ask people to keep directions simple.
7. Repeat information and write down important points.
8. Establish good eye contact during any discussion.
9. Keep the mind active by doing a daily crossword or puzzle.
10. Most computer users will be familiar with Outlook or Yahoo Calendar in which they can write down appointments and reminders and receive those reminders in their e-mail.
11. Set your phones to remind you of things. Or a kitchen timer can be set at intervals during the day if you are at home all day. There are a wide range of books available on the subject of memory training which are useful, because contrary to those with other Neurological diseases, persons with MS can store new memories and are capable of learning new information.
The following site deals with memory training.
http://www.mindtools.com/memory.html
There have been numerous studies looking at ways to stabilise or improve cognitive dysfunction. Some of these studies looked at whether the MS disease modifying drugs could slow the progression of changes in cognition. Results were mixed, with interferon beta-1a showing the most potential.
Studies have also looked at other treatments that may temporarily improve cognitive functioning. Medications used for Alzheimer's patients, including donepizil or Aricept®, may have a role.
Ginko Biloba works by increasing blood flow to the brain; it is a good anti-oxidant which will prevent organs from free-radical damage. Check with your doctor before taking this. It can thin the blood & therefore should not be taken by people already taking blood-thinners such as Warfarin or Aspirin, nor by people with high blood pressure.
Another natural remedy to cognition problems is the supplementation of the daily diet with fish oils and essential fatty acids.
 
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srubin831 replied to cheetoh3's response:
Kudo's to you. Excellent response!
 
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jvt47a responded:
Hi there, I was diagnosed in 1975 when I was 25yrs old, my son was 5yrs old and my daughter 18mths, my husband didn't accept my MS so consequently departed my life , for a much younger and active female in 1996 , so I feel for you in this situation !

I DID NOT take drugs for the first 34yrs , I did it naturally with the help of naturopaths & it was only this time last year I weakened & tried TYSABRI......OMG worst thing I ever did !! so depressing ! I stopped after 5 infusions ! so am now back on vitamins and MY POSITIVE thinking !

yep I turned 60 in october, left work 5yrs ago and determined to keep on keeping on !

have you tried any medication ?

what do you now do with yourself after leaving the workforce ?

regards
jvt47a
 
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trainer65 replied to cheetoh3's response:
Do research on Low Dose Naltrexone medication. Very cheap drug and proves to be very effective for MS patients with cognitive problems among others

www.lowdosenaltrexone.org
www.ldnsciense.org
 
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An_204876 responded:
Sounds like a little support would help, and sign him up for some ms mags.
 
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whitefrazier replied to cheetoh3's response:
Thanks. This really helps. I am doing some of the things and the others I did not think about. Thanks again
 
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whitefrazier replied to Jeffrey A Rumbaugh, MD, PhD's response:
Thanks. I will ask my neuro for the test to be done. Thanks again. Very helpful.
 
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zach1972 responded:
I am a 56 year old, and found out I had MS in 2004. I had had problems remembering things that happened or things I did. I was lucky to have a wife that is understanding of my MS. I did alot of things I don't remember many and maybe its because I don't want to. I would suggest that you keep a record of things that happen and review them every once in awhile. I think you will be suprised how well it helps with the cognative part of the MS. Remember ask for help it is out there!
 
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Marsha537 replied to mmthlvr's response:
Hi, I'm a 67 year old female and was diagnosed 3 1/2 years ago. I have some cognitive lapses, to be sure; but I usually laugh or make fun of myself when I'm with friends. They all know my condition and laugh with me. Good friends (and a fabulously understanding spouse) provide a wonderful means of support for me. The other replies to Anon_ have some wonderful suggestions. Hope something here will be helpful.
 
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clmrnc replied to swampster1952's response:
have same issues. taking 400mg of c0-q10 and 2.5 mg of aricept..really helps


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