March - MSA Awareness month

Welcome to March which is MSA Awareness month. MSA is a form or disease related to Parkinson's Disease. Bob was initially diagnosed with PD but this was changed to MSA Feb 23, 2011 one year ago.

 Definition of MSA from the Mayo Clinic:

Multiple system atrophy (MSA) is a rare neurological disorder that impairs your body's involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion. Formerly called Shy-Drager syndrome, the condition shares many Parkinson's disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance. Multiple system atrophy is a degenerative disease. To see more regarding MSA follow the Mayo Clinic's link :

www.mayoclinic.com/health/shy-drager-syndrome/DS00989

So this means that March is "Bob" awareness month for me and this blog.

How does MSA affect us? What is his current condition? How are we coping? In sharing these things we hope to take advantage of "Awareness" month  to make you aware of MSa and Bob.

How it affected us?:

Since Bob was dx one year ago - Feb 23, 2011- We have had a major change in our jobs. Bob retired from his job as the manager of the mini-storage and I resigned from my job to take over his job. This allowed us to stay where we were living as he was a resident manager and now I can continue to work and still be a full time caregiver. this is the best of both worlds - I stay in the workforce and I am home with him full time.

What is his condition?:

I am fortunate that for the most part Bob is fairly easy to care for, however gradually as time has passed he has needed more and more help with daily life. Two years ago he could walk around the property, reheat food in the microwave, dress himself and get in and out of bed (although that was difficult). He was still able to manage his medications and only occasionally forget. He could still run the office, answer phones and open and close the gate each day. I could still work part time and go away for a weekend and he would be okay. He usually didn't travel with me because of the work schedule and travel was more difficult and uncomfortable for him. He was severely constipated and had developed some large hemorrhoids and so he tended to stay at home and not go out, visit friends, travel and go to church- He remained at home where he could sit in comfort and address his bathroom issues as he needed to.

MSA is a degenerative disease and in several ways he has lost ground and needed more and more help, but in other ways we were able to improve or learn how to cope with things in such a way that he has become more mobile and social. In the begining of last year we were able to deal with the constipation, it's still an issue but we have learned how to keep it at a controled level and know how to deal with it when it gets chronic. He also had surgery that dealt with the hemorrhoids and are now keeping them at bay. All through this disease we will encounter syptoms that while they will never be completely gone we can learn to minimize them or deal with the when they flare up. We have measures we can take to make our lives more liveable. For now.  Eventually they will over take us.  During the year - he had the surgery, we were given a mobility scooter, we learned about several incontenence products and installed a bidet that helps with his constipation. these items have made an amazing difference in his life.

So now this year he can travel, he goes to church with me on sundays (with his scooter), He gets out on the scooter as much as he can. We have lots of stores near us and he has "Shopped" Home Depot. Lowe's, Shopko, Harbor Frieght, Dollar store, URM, Michael's and many more. When the weather gets better he wants to try going to the VA on his scooter, I think I'll follow on my bike. Because he is able to travel now, I am taking him with me, last year we went to the Port Townsend Wooden Boat Show on the Washington coast and to his niece's wedding in Sedona, Az. We learned how to travel by car and plane with the scooter and with Bob's special needs and we had a great time.

As far as the daily stuff that I detailed at the begining. He can no longer walk any significant distance, while he can get around the apartment sometimes he needs a hand because he can be unstable.His posture is bent forward due to the disease, his muscles are rigid and painful and he has lost some of his motor skills and can longer wash his hands or bathe on his own. We experienced a fall in the bathroom one night because his foot will "Freeze" and not move even while his momentum wil continue to carry him forward. this can be hazaedous when he is sleepy and wobbly- so I will usually guide him to the bathroom. For the rest of the day, unless it's a bad day, he is fine. He no longer is able to get into the fridge and reheat his food in the microwave , I need to serve it to him and then take it from him when he is done. Some foods are harder than others to deal with, so adjustments have been made, foods avoided and different utensils are used. He rarely dresses himself anymore and needs help getting in and out of bed. We are installing bedrails and a trapeze that should help him be more independant in that regard. I now have to manage his pills and make sure that he takes them and has applesauce to help swallow if needed. His voice can be soft and he will often stutter but he can still talk my ear off.

How are we coping?:

His brain is still amazingly sharp and he is very very interested in EVERYTHING! He is a joy to be around and fun to travel with I'm so glad that we get to be together now and can enjoy this time together. Every morning after we have finished dressing we indulge ourselves in the daily HUG. this can last for a very long time. It is an essential daily ritual for us. Just husband and wife, Bob and Susan. We are taking advantage of his ability to travel right now and are planning several trips this year. We are making sure that he has all the safety tools he needs so he can go adventuring on his scooter this summer. He has a mapping GPS, multiple lights (including a strobe), a loud bell and a cell phone. Weekly he has had started attending church with me on sundays and wednesdays and recently joined. He is getting to know and be known by many people there and we are starting to socialize as a couple. Spiritually we talk about this disease and what it means to us and our future. He and I are both very willing to allow this circumstance in our lives to speak as a witness and testimony for God's goodness and blessing in our lives. Please read previous posts for specifics. We are wallowing in this togetherness and are secretly pleased to be able to be together so much even while we grieve the losses we have and will endure due to this disease.

So that is our current situation or the cliff notes. I hope that this has been informative to you about what we are dealing with and how and that you have become "Aware" of MSA and Bob this month. think of us often and send up a prayer for wisdom and strength.

Susan