When we are at our family retreat, I attend a 9am yoga class. It’s close so I usually drive. Two weeks ago, as I pulled out, I asked myself if I took my medicine and I doubted myself but thought I did. I was okay through the class but a little stiff. Sure enough I got home and saw the pill next to my computer. The next week I made sure I took it and class went a lot smoother. Just another reminder that medicine must be taken on time, every time.
A few weeks ago I had the opportunity to attend a training session on the general topic of what happens when a person with Parkinson’s is hospitalized. I’ve encouraged people to order these Aware in Care packages for years, but now I have an even better understanding of WHY we want these bags and how to use them. For more information on the Kit’s themselves, click here – AIC Bags.
I won’t go into greater detail about the kit here but what we learned at this training is that for the greater medical community, they know little or nothing about Parkinson’s and in looking back, it’s easy to see examples. Included in this was the first time I saw a new PHP she made a big deal of telling me how she read up on Parkinson’s and gave me a ton of literature. I doubt she had any other PD patients.
Yes, I believe that everyone has their own expertise and not every health profession needs to know about Parkinson’s, we as PWP need to make sure all of our team, including dentists, PT, etc. are highly knowledgeable about PD if at all possible. A friend was recently hospitalized for a heart problem. After surgery he was in rehab a few days and they complained his blood pressure was irregular and sent him back to hospital and it took 3 days for them to realize that this was a Parkinson’s disease symptom. Parkinson’s Foundation’s statistics state that Parkinson’s patients are generally in the hospital more days than non-Parkinson’s patients. 3/4 have mistakes made in their medicine and 2/3 of those have complications, usually from wrong medicines, wrong timing, etc. Other problems that can happen include a PHP or hospitalist using a wrong code to label a Parkinson’s symptom as something else, for example, mistaking Parkinson’s constipation for IBS. This can have long term side effects in our medical records.
The Ambassador program is going to address several audiences. We are going to address the following groups:
- Support Groups – make sure everyone obtains an Aware in Care bag and an explanation of what’s in it. We want to stress the importance of insisting on your medicine at the correct time and NO substitutions, offer to user our own if necessary. Encourage them to use MDS if possible and be careful if their neurologist does not specialize in PDF
- Movement Disorder Specialist practices – Leave post cards for ordering AIC bags and other literature to download.
- Other medical practices- give them the basics of PD, stressing how important it is to get medicines on time, the variability of symptoms, etc. Order literature kit for them if they want it
- Hospitals – same as above, but also encourage them to have a policy to call a neurologist and Parkinson’s aware physical therapist whenever a PWP is hospitalized.
- Medical and nursing schools. Review the whole presentation for Parkinson’s Foundation and give them ideas for working with PWP in the future.
So in general I’m excited about working on this both in NY and Florida but I’m concerned how many people are we talking about. I didn’t know if a typical hospital see’s 1,10, or 100 PD patients a month for example. So I’ve started on support groups, but I’ve waiting on some of my other contacts.
So my message to my friends with Parkinson’s is to question every professional including dentist, chiropractors, etc. as to how many Parkinson’s patients they treat and look at every new symptom as to whether or not it can be from Parkinson’s. Also make sure your pharmacist checks any new prescription for compatibility
We all know that Parkinson’s is a degenerative disease. But my Movement Disorder Specialist says that if it starts slow, it usually stays at a slow rate of change and visa versa. In other words the younger you develop this the longer you are going to have to live with it. He also says you don’t die from Parkinson’s but rather you die with it. (Perhaps due to complications from Parkinson’s)
Actually much about how I’m doing is still as described in my April posts, so I won’t repeat. I still am pleased that I’m doing well and can participate in some cooking and chores around the house. I’m pretty sensitive to temperature changes so the heat spells doing do very well for me
My biggest frustration is that my best cognitive time going to and traveling between exercise classes. By the afternoon it’s a lot harder to concentrate and be organized. I still want to get out more in the afternoons to socialize. Evenings can be hit or miss. I don’t really like going out to dinner because it’s easier to not eat very much rather than take my chances of having difficulty swallowing. I try to make sure I take my 9pm pills early or leave an event before my walking stride minimizes.
I’ve switched personal trainers in NY. Diane knows a lot more about Parkinson’s than Marcy (see next post). We’re making a picture for each exercise and she’s very strict about body position. That said, I’ve come to the conclusion that these exercises might make my muscles stronger but they aren’t really going to help me feel better in the long run. I’m still going to be stiff in the mornings but I can help myself turn better with stronger arms. (I assume). And I guess I’m better at forcing my body straight. One puzzling observation is that I often wake up and can move relatively easily and pain-free in the bed but when I stand I have both pain and stiffness (and lack of walking stride).
So I guess I’m looking as good as can be expected for having Parkinson’s about 15 years. I’ve been able to meet people and not have to explain my appearance right away. Many say “I never would have guessed.” But without taking medicine every three hours I don’t know how I would appear to strangers. Also I’m often pain free mid-day for a few hours. However if I walk too long or stand at the kitchen counter too long. The pain starts up. Looking back at my notes, a twisting feeling when standing at the kitchen counter has been a complaint almost since the beginning.
A lot of people have more serious problems but many issues “go away” Parkinson’s is my constant companion but I try not to let it stop me. But as my friend, I hope the readers of this will be patient but not condescending with me.