Wednesday, September 17, 2008

Calling the Collective Conscience for Creative Ideas

Kim of Mandatory Rest Period needs your help!

She's looking for ideas and recommendations to pass on to a friend. Please read the following post. If you have ideas to share, please go to the original post and comment there or send Kim an email at restperiod (at) gmail (dot) com.
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.
I also thank you all in advance for your suggestions to Kim.

Also I'd like to thank those who have generously donated funds for the purchase of the specialized cushion for Herrad. We are just beyond 50% of our goal, but still need more contributions. Please continue to spread information regarding the project.

What it would take to reach our goal:
$15 each - 18 donations
$20 each - 14 donations
$25 each - 11 donations
$30 each - 9 donations
$35 each - 8 donations
$40 each - 7 donations
$45 each - 6 donations
$55 each - 5 donations
$70 each - 4 donations

Donations can be made through the PayPal link on the sidebar of the blog. Thanks.


  1. Lisa you are amazing. I am so impressed how you always find a way to help others. I really appreciate all the great caring and advice you have given me along this journey.

  2. I think a mini tv would be nice, and with an address we can all send her a card.

  3. Wow. That touched even my black, shriveled, little heart. I don't have any money to donate, but I know my mom would. My mom works in a nursing home and has similar patients, so I will ask her for her suggestions. Thanks for bringing this to my attention.

  4. If I had PPMS and was in an assisted living facility, the most meaningful "gift" to me would be an actual visit from friends and family members.

  5. Thanks for your comments/suggestions everyone. I'm working on getting her address so folks can send her postcards etc. She does have a little TV, and sadly she does live in another province so visits in person are not as frequent as my coworker would like them to be. Someone else recommended sending her a video of a routine life events going on, and I think that will be done soon too.

    Lisa - Thanks for posting this for me. I appreciate it!

    If anyone else has any other ideas, I'm all open to it. Thanks!!