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Diagnosed with dementia at 44
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vickiluch posted:
I have RRMS and have been on Tysabri for almost 4.5 years. I do get tested quartly for JCV virus, always been negative.The Ty has been keeping the disease at bay , however I have become more symptomatic. I did have lesions on the brain, optic nerve and lumbar and c-spine. My memory is terrible and gradually becoming worse. I recently had been tested with a neuropsych eval. Yesterday I was told the results which indicated I have dementia. I am 44 years old. They suggested for me not to even work. Wondering if this is normal? Does anyone else with MS have this at my age? I go to my Neuro on 4/9 along with my husband, hoping for more answers. Any input would be greatly appreciated. Vicki
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hackwriter responded:
Hi vicki,

Cognitive dysfunction does occur among MS patients and is mild to moderate in most patients. What they are calling dementia isn't necessarily the same as what occurs in an Alzheimer's patient. The word dementia sounds scary and it conjures up some pretty extreme images. However, memory loss is very common in MS. I have it myself.

In your follow-up with the doc, you will likely discuss rehabilitation and medication. There are memory exercises you can do, for example. And as far as working, that depends on how you are managing in your present job and exploring options for other kinds of employment. My reading suggest that doing some kind of work--keeping your mind engaged and challenged--is beneficial. On a personal note, though I retired from full-time work in 2009, I now do part-time freelance work online, choose my own hours. There are options out there for you.

I hope you will let us know the results of your follow-up appointment. Good luck to you.

Kim
 
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vickiluch replied to hackwriter's response:
I have just filed for disability within the past month per my doctors request. And as of yesterday, the psychologist is recommending I do not work at all. I was working full-time up until November. Disability takes forever to get approved and I would love to take some of the burden of my husband. If you could recommend to me any legit freelance work that would be fantastic. It's hard to tell which is legit and which is not. I have been in Health care on the administrative side for more than 25 years. Thank you in advance
 
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hackwriter replied to vickiluch's response:
Vicki,

You could look up your local chapter of the National Multiple Sclerosis Society website and drill down to the employment section to read their tips. There is a helpline to call as well.

Another source might your county health and human services department. I used that resource when I stopped FT work as an admin asst, it paid for my training to be a medical transcriptionist, though my subsequent internship proved too demanding and I didn't pursue a job.

As far as job opportunities, that's a tougher one. What do you like to do? You might want to think in terms of something you would enjoy that has value rather than putting pressure on yourself to take the burden off hubby. I know how you feel, believe me, I felt terribly guilt-ridden about no longer contributing to the household and losing my independence. We take a hit to our self-esteem for sure.

I can only tell you what I work at now and how I found it. I'm an MS patient consultant/advocate/writer. I started out here on WebMD doing research and answering patient's questions. I also wrote a blog about coping with MS. A recruiter found me here and on my blog and offered me a consultant gig. Through networking, my consultant colleagues recommended me for a job writing and moderating an MS patient support site. I was already a writer before I developed MS, so that was a skill and a strength that came in handy. I set my own hours and can write as much or as little as I want.

So I found PT work that is my interest and which has value on several levels. It supplements my SSDI income.

Also know that once you get SSDI, there is a Ticket to Work program which you can read about on the SSA.gov site. You will occasionally get a call about opportunities to do customer service at home jobs that are legit.

So there are a few ideas for you, hope it helps.

Kim
 
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vickiluch replied to hackwriter's response:
Thank you so much! You have been a big help, I'll keep you posted!


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