I Am Afraid

  1. 0
    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 will it work for me???

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  2. 1
    Hi,
    I don't really have any sage advice just wanted to commiserate on the difficulty of having to face our limitations as time goes on. Hang in there, Jules
    walk6miles likes this.
  3. 0
    I am sorry that you had this experience. I can only advise you to communicate with your manager about this and your concerns. It is sure to get back to him/her. They should be able to work with you. The ADA requires "reasonable accommodations" be made where possible. A reasonable accommodation here could be not having you do these kind of trips.
    Good luck,
    Brian
  4. 1
    Quote from 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.:spin:
    walk6miles likes this.
  5. 1
    I am a working ER nurse diagnosed with Parkinson's two years ago (although it is starting to look more like essential tremor).
    First, I have never heard of staff nurses having to go with patients in aircraft; don't they have flight nurses? 2. It seems that you should not have to do this type of thing under "reasonable accommodation".
    I have found the staff at my ER to be very supportive of me and my occasional absences. They are amazed that I continue to work and still do a good job under stress, and that I didn't immediately try to get disability-I love what I do and will do it as long as I can.
    Please PM me if you would like to talk more. You are to be respected for continuing to work in critical care with this disease.
    walk6miles likes this.
  6. 0
    Thanks to both of you for your wonderful messages.... I went with the patient by ambulance ( I had to because of all the drips she was on)...I have a lot of support from everyone at the hospital; few people criticize - I am doing my best plus some more. They realize it.
    I seldom run into a problem - even last weekend when they sent me to ER and they gave me 4 GYN rooms (I am NOT a GYN RN) but!!!! I did it!
    They just kept bringing them in; I kept turning the rooms as best I could with the docs I was working with......I asked them if they were trying to kill me - the registration people kept saying "it hasn't been this busy for 6 months!!"
    Again, thanks for the replies!!


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