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?
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 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.
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.
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.
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.
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 ?
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!
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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