Ocrevus

I have completed my first 2 infusions of Ocrevus, the very first disease modifying treatment for progressive MS. I had no allergic reaction and do not see any side effects. And now I don't have to go back again for six months!

May the end of my MS progression begin!

Do you ever get mixed feelings?

Why is it that good news can make us sad?

First, I got word from PA saying I would receive 62 hours of home health services per week. It was a long process, and I cried with relief when I got my wish. Life got a lot easier. Whew! But then I felt sad about needing the help in the first place.

More recently, I learned that the first ever treatment for progressive MS, Ocrevus, was approved and available soon. I've been hoping for years to find something to stop my abilities from declining. Again, relief that help is on its way! But I also feel sad that it's even necessary.

I guess I've found ways to pretend life is just fine. In some ways, it is. I have lots of love from friends and family. I have a beautiful home and lots of things I enjoy doing. I'm good at focusing on the positive. Sometimes things shake my reality. Physical care and advanced medicine are two things most 46-year-olds don't have to consider. I do.

We take the good with the bad. So it's okay to be happy and sad at the same time. It just feels odd.

Thanks for listening!

patient

1. 1 :  bearing pains or trials calmly or without complaint
2. 2 :  manifesting forbearance under provocation or strain
3. 3 :  not hasty or impetuous
4. 4 :  steadfast despite opposition, difficulty, or adversity

Are you patient? I think I must have been born with a patient gene. 

As a teacher, I had lots of patience for my students. They had struggles, and I think my calm, easy-going manner was helpful.

I have daily frustrations with MS. I have honed my patience over these 20+ years. My mood is always better when I can calmly face my challenges.

 

Now, I am nearing the end of a new test of my will to be calm. I moved to PA in September 2016 and immediately applied for a state program to fund my home health care. The application said "30 to 60" days. It has now been over 5 months!

Sigh. All I can do is wait. I'm tired of complaining but I can't seem to help myself.

Thanks for listening. 

Wishing you patience when you need it!

living in the moment

I am reaching new depths of living in the moment.

For as long as I can remember, I have been taking photos of family, friends and events. The way I write in my journal to preserve my memories, I loved having visual reminders of my life.

Due to my MS, I now lack the strength and dexterity to take pictures unless I have just the right set up time and no pressure. So taking pictures to document the things I do doesn’t really work anymore.

Now, when I am in the moment and want to photograph whatever is happening, I must sit back and take in the moment fully without documentation. Maybe I will do more writing to describe the things I see, but it’s not as satisfying.

So I am practicing taking in the sights and sounds and appreciating them just as they are. Wishing you many moments of things you love!

"Who Moved My Cheese?" by Spencer Johnson

How do you handle change? I recently read the book "Who Moved My Cheese?" by Spencer Johnson. The most important things I learned were to anticipate change and find a way to enjoy what happens.

There were four characters. They all found a great store of cheese which eventually disappeared. Sniff went ahead, sniffing out possibilities, until he found more cheese. Scurry went ahead without looking until he found more cheese. Hem kept hoping the cheese would reappear, but he eventually realized he needed to go out and find something new. Haw refused to leave the empty site of his beloved cheese, insisting that things would get back to normal.

Having MS has "moved my cheese" more times than I can count. I have had no choice but to move forward and find new ways to do things, new ways to pursue my goals. When my mom was here, she was great at sniffing out what needed to come next. I'm not great at predicting but I'm excellent at adapting.

And it was Hem who discovered that picturing a positive outcome helped him face the changes ahead. I'm trying to do that now. There are changes that my disease may cause that I greatly fear: losing all movement, losing the ability to communicate, and needing so much physical care that a nursing home facility would be my best situation.

If I can't move or communicate, I hope I will find a way to live happily in my thoughts. If I need a nursing home, I hope I can create a space within it where I could be happy (photos of family and friends, great art, comfortable computer set up). I hope these things won't come, but if I can picture them with happiness I think I'll be okay.

Face the changes ahead with a strong heart and spirit. You will be okay, too.

learn to listen

Listen to your #body. If something doesn't feel quite right, it's worth taking the time, even postponing plans, to be sure you are #healthy.

prevent

RE: preventing osteoporosis, non-ambulatory women

Dear doctors,                                                 

I have a concern that I wanted to bring to your attention. There's no way to change the situation for me, but maybe it could be better taken care of with future patients.

Within the last year, I was diagnosed with osteoporosis. Dr. K had been concerned for years about my lack of weight-bearing, but I did not know how to help that.

I wish that someone had told me about standing frames while I was in rehab in 2007. I think that might have helped prevent my osteoporosis. I also wish that we had done a bone scan several years ago. I have been non-ambulatory for 15 years. If we had screened earlier, we might have prevented the problem.

I wanted you all to have this information. Maybe the use of a standing frame could be suggested to women who cannot bear weight. And perhaps bone scans could be done for women after five or 10 years of non-ambulation.