Wondering about others with cognitive problems?

[victoria45]

Just joined. I'm hoping this will be a good place for me to meet friends,get advice and information. I have 2 grown boys,and a one y.o. grandson.
I have an R.N. degree,graduated in 95. Have been dx for about 8-9 years. Luckily my mobility is not the major problem, it's my cognitive. I'm under going neuropsych testing again,because it's gotten so much worse! I can't work because of it. I feel like my dr. thinks I'm nuts or something. I'm open for any other shared experiences or advice!

[domi6300]

I understand...

I believe my cognitive problems are the most stressful part of MS for me. I am newly diagnosed (December 2010), but I am already noticing an increased lack of ability to communicate effectively. I forget words, say the wrong word, or take longer to formulate sentences in general. My memory is also worsening.

I have a Master's in Social Work, and am thankful every day that I was able to finish school just before my MS began becoming a problem. I am still working, and trying very hard to still be able to provide good care! I've been lucky that most people have not noticed any changes yet.

I would hope that any neurologist would understand that cognitive problems are very common in MS, and support you in finding solutions instead of demeaning you.

As for advice, I make a point of writing down everything I have to do, in detail if necessary. I don't leave anything up to my memory, and I've found this actually helps me to process better, because I'm not overworking my remaining faculties.

Good luck with your testing!

[victoria45]

Thank you for your reply. It's very frustrating,and like you,it's by far the most difficult symptom for me to deal with. I lose my train of thought when speaking/writing,tend to repeat myself,word retrieval,spelling,etc. I'm taking a couple college classes,in an attempt to reverse,stabilize or at least slow this down.(taking reading,fitness concepts and yoga)I'm looking forward to the end of the semester to see my outcome.

I too write everything down.I keep a day planner with me at all times.Use lots of sticky notes.I keep a spiral notebook on my table-I try and write everything down that I've done during the day.I've found this very helpful,(example)-when next week comes,I can look back at this week and see if/when I called the phone co. or moped the floor,etc.
Congrats to you for completing your masters degree!That is a very big achievement!
The best of luck to you in your practice.

[wkikta]

I write everything down, even got a digital recorder for when I can't write. I follow the Tom Clancy rule "if you don't write it down, it never happened", some people roll their eyes at this, but they are just 'stupid people'.

[domi6300]

Victoria,

Thanks for the congrats and the luck!
In some ways, I feel like nurses and social workers can be better practitioners because, finally, we really understand what our patients and clients go through! (I work in hospice).

It sounds like you already have a good method of responding to cognitive difficulties, even if you can't make the difficulties themselves go away.

Please keep us posted on the testing. Good luck to you!

[KoKo]

Hi Victoria

Welcome to MS World - nice to meet you!

Luckily my mobility is not the major problem, it's my cognitive. I'm under going neuropsych testing again,because it's gotten so much worse! I can't work because of it.

Sorry to learn that you have cognitive issues that prevent you from working. I'm sure that is extremely frustrating, and you miss your nursing profession.

My mobility is the major issue, and I am unable to work also. I guess with MS, if it's not one thing, it's the other. My main cognitive problems are decision making, verbal expression, slow comprehension when others are talking, get distracted easily.

I'm taking a couple college classes,in an attempt to reverse,stabilize or at least slow this down.(taking reading,fitness concepts and yoga)I'm looking forward to the end of the semester to see my outcome.

Good for you - hopefully your efforts will help!

Good luck at your appointment. Try not to be concerned with what your doctor thinks - you are not nuts.

Looking forward to seeing you around!

Take care,
KoKo

[victoria45]

[QUOTE=domi6300;1277989]Victoria,

Thanks for the congrats and the luck!
In some ways, I feel like nurses and social workers can be better practitioners because, finally, we really understand what our patients and clients go through! (I work in hospice).

It sounds like you already have a good method of responding to cognitive difficulties, even if you can't make the difficulties themselves go away.

Please keep us posted on the testing. Good luck to you![Thank You.And by the way,Hopice is my passion,I used to be patient care coordinater and it was the most rewarding job I have ever had]

[victoria45]

Thank you for the welcome!
I agree if it's not one thing it's another. But I am filled with gratitude every day. I always say 'things can always be worse'.
Thank you for supporting me in school. And as far as some of these doctors go, I wish they could live in my body for a day-then they would know exactly what I'm talking about.