Free Parkinson's Kit

I don't know how many of you are aware of a free kit for hospital stays for Parkies.

I just received my free kit which consists of a black bag to hold the following FREE items: Hospital Action Plan, Parkinson's Disease ID Bracelet, Medical Alert Card, Medication Form, Parkinson's Disease Fact Sheet, I Have Parkinson's Reminder Slips, a Magnet which reads: I Need my Parkinson's medications ON TIME, EVERY TIME.

I wish I had the kit when I had my back surgery. What was supposed to be a routine surgery got complicated due to the lack of knowledge of Parkinson's Disease by hospital staff members.

To order your FREE kit, call 1-800-473-4636 or awareincare.org

Gloria1952

22 Replies

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  • Thanks for info unfortunately not available in UK however worth thinking about.

  • Did you ask whether they ship overseas? Excuse me if you've already thought of that, I'd rather do too much than not enough.

  • nor in france i am afraid though i would not mind paying the postage

  • Let's see what we can do about that. Getting a kit to you so that your organizanization can emulate or just everyone write--e-mail (if you give us the address). I fear I'm becoming quite outspoken about our need for assistance so that we can remain contributing members of society and of assistanvce to one another and others.

  • THANKS FOR THE ADVICE BU I DONT THINK I CAN GET ONE HERE

  • Gloria, thank you for the tip!

    I have ordered the free kit, and found that the site, The National Parkinsons Foundation, has many free informative books and articles which you can download for free. I am happy to have found this additional source of current information!

  • That is great! I just ordered one--thank you so very much for this information!

  • I received mine. (I don't remember ordering it, but there is a lot I don't remember lately :) )

    My neurologist said we do need to educate hospitals about PD.

  • Thank you, Gloria! I ordered my free kit today. This kit would have helped me greatly when I had surgery this past Oct. My surgery time was 12:30 pm. At 9 pm I had still not been given my PD meds. I was a mess! I didn't think the tremors would ever stop. My husband finally insisted that they give me my PD meds. Then, I was only given 1 of my medications. If this ever happens again, I'll be prepared next time.

    Thank you again for this invaluable information.

    Cheri :)

  • I ordered one last week. The last time I was in the hospital it was awful. They would not give me my meds on my schedule.Thanks for telling people,I read about it on the Michael J Fox site.

  • Brooke,

    I had the same experience when I had my back surgery. It was supposed to be a five day stay at the hospital and due to complications, I was in for 33 days! I was in four different hospitals/rehabs, so you can imagine trying to educate the nurses each time about my meds and how important it is to get them on time. One of the nurses just stopped my PD meds cause she didn't think I needed them. I didn't know at the time what was happening, just that something was very off! Thank God my husband was my advocate and checked frequently on my care. I don't know what people with PD do without an advocate.

    Sorry, didn't mean to go on like that but it was a horrible experience and I try to warn PD patients who may have to be hospitalized.

    This kit is a great way to educate people.

  • Thanks so much for the info. I just ordered mine.

  • Thanks, Gloria. I'm getting right on it. I decided to order an extra kit to help me educate the people in my community

  • ACTUALLY IT IS PRETTY ANNOYING as i thought i would have a go again at getting one despite there being a drop down box for other countries - when you get to the checkout it says they can only send to aUS address !! ;-(

  • Thanks for the info....My Husband has PD and I need all the help offered!...Ordered kit and they are glad to send one!

    bahafah

  • I'm sorry for those living abroad that can't get the kits. I will try to find a way to get them to send you a kit.

    Gloria1952

  • I ordered mine a while back, I got a phone call telling me there was such a demand it wouldn't be mailed out until June...can't wait to get it. Aren't we blessed!!

  • Ordered mine two days ago. I called two weeks ago and left a message. Then I went on spring holiday with the family. PDF returned my call at least three times to see what they could do for me and in June, when the kits are resupplied, I will receive mine. Could have used it over Xmas when I was in hospital and, while it was top hospital, they could not get my meds right--timing or relative to eating times. Thanks goodness I had my husband with me who could convey importance to them (and I had my meds with me, even though that's a no-no.

  • In the summer of 2010 I was getting a stent placed in my heart. For some reason my meds were not given to me. During the procedure I was repeatedly told not to move. I locked my right leg (being attacked by RLS-restless legs syndrome) in a vise-like grip for over an hour. I felt like spiders and ants were crawling inside my leg joints - I was in agony and moaning uncontrollably. After discharge I went directly to the hospital advocates office and pleaded my case. I got a reply but it was not specific. There is much more to this "experience" in the hospital that I'll leave to your imagination to fill in the blanks.

  • Could have used this last year when hubby had his gallbladder out. He was in the hospital for nearly two weeks. He was so confused and agitated and no one knew what to do. One nurse kept him dosed with ativan just to keep him quiet. I had to fight with the hospitalist to get him discharged. The aide watched as 5'4" me lifted 6'3" him into and out of the wheelchair and into my car. Within 2 days he was lucid and up walking. Our support group has its Symposium April 28th and one of the topics is on surviving a hospital stay. I will be certain to share what I learn with all of you.

  • Great idea and thank you. I was in the hospital emergency center because I had fallen and hit my head. I was out for a short time. THey checked my head for fracture and bleeding. I ended up with a concussion. They told me I had to stay for one night. IT was a nightmare. THey put me in the cardiac ward thinking it must have been a heart issue. I told them I needed my meds. THey told me I had to use the hospital pharmacy and couldn't take meds I brought. THEY went to their pharmacy and did not have my pills! SO I took the ones I had in my purse. I was labled a "bad patient". I asked the nurse for an ice bag (for my bumps on my head.) THEy said "WHere are you going to put the ice, On your heart?" They said it wasn't on my chart that I had fallen nor was it written that i had PD. SO as far as they were concerned I had a heart problem and not PD. IT was terrible. I had to "sleep" in a bed for heart patients. THE bed moved up and down and back and forth so my blood would circulate the worst possible place for a PD with a concussion. I am happy someone had thought of this information to present at the hospital. THank you so much.

  • I ordered mine about one month ago.How long did it take to get yours?

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