caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Wednesday, September 17, 2008
I need your help!
Hi everyone! Wow, I'm soooo behind on posting here, but I move in 2 days and life is crazy at the moment! And strangely enough, my MS hasen't reared its head during this process and I'm grateful for that. We'll see what happens when I get to stop and rest at the end of it all! Ha!

So, I have a big favour from all of you and I'd like to tap into your compassion and experience and expertise. I have a good friend who has a sister with PPMS. I don't know a lot about this "version" of this disease other than the progressive nature can be very severe. My friend lives a province away from her sister and can only send things to her. She wants to continue to stay in contact but cannot have phone conversations with her as this is too difficult a task for her sister to handle. So here is the question I've been asked. What can she send to her that would be appropriate, helpful, and most importantly respectful towards where she is at in her disease?

Here is her sisters condition as I have learned:
- She was given perhaps 5 years to live on getting diagnosed in her early 30's. She is now 41 and is quite far progressed with her MS
- Can not walk, is assisted in/out of bed, has spasms in extremities
- Can not communicate well, does not have strong cognitive function but does remember family members, just not time frames, sometimes confuses yes or no answers about where she has spent her time in a day
- bladder, fistula problems and colestomy bag complications are routine
- seems to enjoy music, watches TV but doesn't take part in much else. She is in an assisted living facility who try to keep her as involved as possible. She does massage, physio etc as well to help with keeping her limber.
- Eating is difficult if not in finger food type portions. Otherwise she is assisted to eat.
- Cards, pictures and letters read to her have all been met with a happy reaction

So, if any of you have any recommendations as to what could be sent to perhaps give her something to enjoy from a family member that you know to be appropriate, I would really like to hear from you. Please pass this along to anyone else you know that has MS or has a family member with MS who could share their experiences. Thank you SO much everyone! Feel free to leave a comment, or email me directly at restperiod at gmail dot com.