Originally Posted by walk6miles
I have been living with Parkinson's for five years now. It is a miserable disease but I thought I had it pretty well under control. So far, I've been able to continue working in critical care areas (I am recently a centralized staffing kind of nurse) but yesterday I had a GI bleed who began to projectile vomit bright red blood. To make it concise, I had to take her by EVAC from this little satellite hospital I am doing 2 - 12 hour shifts in ICU to the "big house" -- our mother-ship. She was on Sandostatin, Protonix, NS, and Dopamine. The EVAC staff (four of them to transport the patient and me) packed up the pumps as best as they could. They rolled the patient's stretcher to the ambulance and loaded her in - monitoring EKG and BP and pulse ox.
It was my turn to jump up the two steps and seat myself - oh my God - I could not raise either leg to the first step (quite high)...then I tried 3 or 4 more times - they looked at me like I was nuts...of course, now I have to explain why - so they shrug their shoulders and pick me up under my arms and off we go.....
Getting out was just as bad -- they practically picked me up and placed me on the tarmac....great gentlemen.
I use an electric scooter to go the long distance into the hospital from the parking garage - I don't need it for walking around in the unit but the walking around (following the patient's stretcher) was a nightmare...we were diverted to the wrong place TWICE and finally found the right place only to be sent instead to the ISC bed so the physician would have more time for ...?? ...I'm not sure what.
Long story short, the patient had a TIPS procedure and is doing well tonight (24 hours later) - I got a ride back to the little bitty satellite where I licked my wounds until 0700..... I am back at work tonight but I am afraid - downright scared as to what this damn disease holds for me in the future....I need more strength training, but inwill it work for me???
I'm sorry to hear of your situation. I'm 53 and have post polio syndrome. This is a contining weakness of muscles. I contracted polio at age 6 months, 6 months before the vaccine came out. I've worn braces during times of my youth and started again right out of nursing school. It's strange because I've never considered myself disabled until recently. I did change jobs to a desk job several years ago.
My physical condition deteriotated and approximately two years ago fatique and the continued loss of muscle strength caused me to retire ( screaming and kicking). Luckily I got SSD the first time around. I try to concentrate on the things I can do and not what I can't do. I volunteer at a nursing home in giving advice in regards to survey issues.
I thank God everyday for the strength I have. I tend to loss my balance and bump into people. I just tell them I have a balance problem and I may take them with me so watch out! I use humor alot. I used to feel strange telling people but not any more. I tell them I had polio but I'm one of the lucky ones! I've learned to accept help. I think when they have to help me (helping me up bleachers, etc) makes people feel good. I try not to be a burden to anyone and continue to be as independent as I can. My family gets upset with me because I'm not good asking for help sometimes.
I don't know what the future holds as you don't either. Just take it one day at a time. Everyday remind yourself of your blessings and what you can do. And start planning for the future. Maybe you will need to find a desk job. But that's ok. You will make it. You sound like a very strong person and your strength will get you through. And if you believe in God pray that he will help you through the next day and he will.
I know my disease helped me to be a better nurse, much more compassionate and caring. I thank God for that. Good luck and take care. I'll pray for you.
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Re: I Am Afraid
