Just remember that together, we will do better.
Twitchy Woman
I have had the good fortune this summer to have been asked to contribute to several different publications. Last week I shared an article from WebMD. I have two more things to share with you today.
thrive
Amneal Pharmaceutical’s publishes the quarterly newsletter thrive for people with Parkinson’s. The summer issue is devoted to traveling with Parkinson’s. Twitchy Woman (Sharon) was featured on page 8 in the July issue of thrive, which is all about traveling with Parkinson’s. There is a lot of good information about travel, so I recommend that you look through the entire newsletter.
The Brian Grant Foundation Summer series on Women with Parkinson’s.
This was published on the Brian Grant Foundation blog on August 21.
By “Twitchy Woman” Sharon Krischer –Author of the blog “Twitchy Woman, My Adventures with Parkinson’s Disease” and women with PD advocate.
When I was diagnosed 15 years ago, there were not a lot of resources for women with Parkinson’s. I did not know any other women with PD and the few support groups in my area met at times that didn’t work for me. I had one male friend who was diagnosed about the same time, so the two of us became our own support group of two.
I am glad to say that things have definitely changed in the last 15 years. Since I started writing my blog, Twitchy Woman, My Adventures with Parkinson’s, 10 years ago, I have been fortunate to have many opportunities open up to me as a woman with PD. I have met many other women through the various PD organizations and at the 3 World Parkinson Congresses that I have attended. We have participated in studies about women with PD, attended events specifically for PD and we have worked hard to dispel the idea that Parkinson’s is an old white man’s disease.
Continue reading here.
On a personal note
I have been dealing with the health care maze since mid-July because of an injury on July 6. In the first of three airports on the way home from our Arctic cruise, I reached for my carry-on bag in security and felt a searing pain shoot through my arm. I saw my GP (who is a concierge doctor) 3 days later. He sent me for xrays, which took over a week to get scheduled.
The xrays were normal. The next step was an MRI, which took another week to get scheduled. The results came back that I had a tear in my biceps where it attaches to the bones in my elbow. Then it took 2 more weeks to see an ortho, and that would have been 4 weeks but my GP called him personally to get me in sooner. And on and on.
I finally start PT next week. They had no time available until then. Still in pain, I went back to the ortho a few days ago and he finally recommended a sling to keep my from using my right arm. That is the one thing that has actually helped relieve the pain.
Navigating the Health Care Maze
Advocating for yourself, especially when dealing with Medicare, can be difficult. Our health care system is a mess. Too many patients and not enough doctors makes it almost impossible to get immediate care when you need it. Apparently the only way you can get an xray or MRI immediately is to go to the emergency room, where you will sit and wait for hours just to get into a room. By the way, many Urgent Care facilities do not have xray equipment. If you think you need an xray, call ahead to find out if they have xray equipment. If not, go straight to the emergency room instead. You will end up there anyway, so why aggravate yourself with an unnecessary stop.
What Can You Do?
Speak up for yourself if things are not moving as quickly as they should. Bring someone with you who can help you communicate with the doctors and health care facilities so that you can get the care you need as soon as possible. Sometimes when you are in a lot of pain, as I was, it is difficult to advocate for yourself. You may forget to ask questions or do not remember everything you were told. Why didn’t I ask for a sling to rest my arm two weeks ago? I really don’t know. Next time, I will make sure I speak up.
Have a great week
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