Friday, March 1, 2013

Wear Purple!

March is MSA Awareness Month!
The Ribbon color is Purple!

All across the US- MSA warriors are petitioning their states to, first, make a proclamation of March as MSA Awareness month and then to push it forward into a state law. Many have reached the proclamation stage, a few are already state law. I would give you a list but I haven't seen one, but I do know that one is currently being created and I will include it later.

The difference between proclamations and the laws is that the proclamations are only for that year while the law makes it permanent.

When Bob was first diagnosed with MSA I found very little info and support out in cyberland. I continued my association with the Parkinson's Resource Center here in town and still count the caregivers support group my mainstay support along with the wonderful people in my church.



Gradually through social media I have met and connected with others in the MSA community and watched it become more and more active and persistent in raising awareness of this rare disease.

What is MSA?

MSA is a rare neurological disease that affects about 15,000 people in the US. It is considered a degenerative disease that affects one's balance, bladder, bowls, blood pressure, speech, swallowing, sleep, breathing often accompanied by muscle rigidity and tremors. Most often patients are misdiagnosed as having Parkinson's disease. To find out more check out the press release posted on http://www.msaawareness.org/


How can you help?
  • Wear a purple ribbon and when people ask what it's for tell them about MSA.
  • Help us raise funds by purchasing the beautiful awareness products produced by several of the MSA warriors. Many of these people are the caregivers of folks with MSA and they are making beautiful- T-Shirts, hats and bracelets that help both make MSA visible and the funds go to help support research.
                    T-Shirts and hats              bjconnelly@netnet.net


                     MSA awareness bracelets  msaawarenessbracelets.weebly.com

  • Pray for both a cure for MSA and for the provision of everything that people currently dealing with MSA need.
  • Keep in contact with those you know that have MSA. They can often become very isolated and social interaction is an amazing lifter of spirits, both for the person with MSA and the caregiver. 
  • Write to them - the caregiver can read the letters and cards to them, let them know they are not forgotten. and don't forget the caregivers.
  • Treat the caregivers- the better spirits they are in the better care they can give.

Many people have asked how they can help me and have even offered to take over caring for Bob while I get away. I really appreciate the offers and sincerely think about how I can accept the offers. Getting away for a few hours is do able, but we are always mindful of the intensely personal care that can be required that involves extreme trust and can limit our ability to accept the offers. So if you offer and truly want to help don't be dismayed if it takes me awhile to figure it out. I do want the help, I just have to figure out how to arrange it.

Case in point. A man from my church offered to spell me for a bit and the end result is that he will be taking Bob to our men's retreat. The retreat is located at a conference grounds about 45 mins away. An overnight is not impossible but it would require a LOT of packing and I would have to attend. But I can get him ready and hand him off to the men of this church who can bring him home Friday night and pick him up again Saturday morning. I am confidant of his care because Jim is familiar enough with Bob and several of the men attending are paramedics, nurses, doctors and emergency responders. He couldn't be in a better place and I can be relaxed while he is away. Also we have product that we can use during the day that can alleviate the need for "embarrassing" moments.

I am excited to hand him off to the men of Crossover Church, both for Bob and for the others. There is as much joy in ministering to others as there is in receiving the ministries. Both will benefit greatly and who knows how God will work in this outing.

I know I started this blog entry as a way to promote MSA Awareness month, but it seems to have morphed into a Bob Awareness tutorial. Funding for research, finding therapies that help those who have the MSA now and looking forward for a cure for the future is very very important, just as important is caring for those who suffer with it now. So I guess this post is  truly all about raising awareness of MSA to find a cure and to minister to those who suffer.

So don't forget to wear purple for MSA and Bob Awareness month!!!!

One of my favorite pictures of Captian Bob taken shortly before MSA entered our lives