Negative effects of rehab on Parkinson's symptoms

The Parkinson's Foundation has developed a Hospital Safety Guide for Parkinson's to help address some of the concerns PD folks have.
HOSPITAL SAFETY GUIDE
https://www.parkinson.org/sites/default/files/documents/Hospital-Safety-Guide.pdf
For instance, your blood pressure or thyroid pill don't have to be taken at a specific time every day - you won't even notice if you were to skip it for a day. Wheras your PD meds being 2 hours late is quite a different thing and if you're on any ward except Neurology, the nursing staff just aren't famililar with the special requirements PD patients have (and may perceive your high level of interest in getting it right on the dot as demanding, rather than really desperate.). And, if your hospital is like most others, the overall shortage of health care professionals makes it especially difficult for the staff to deal with anything atypical. In Germany, some hospitals bring their patients a pill box every morning with their meds for the day - morning, noon, dinner, and bedtime - and the patients are responsible forr keeping on top of their own meds (when it's feasible). I don't know if your neurologist coordinated with your Ortho doctor about what you might need because of your PD, or tried to give the nursing supervisor a heads-up on what you might need, but if that wasn't coordinated, and you find yourself in a position where you need to go back to the hospita, this guide gives you some things you can try t o make it a better experience that the one that you had. It may also be useful to know ahead of time if there are some requirements you have that are unlikely lto be met by the available hospital staff,, and then try to see if there is anaything you can do to fill the gaps - if they don't have staff to ensure you get physical therapy every day, maybe you have friends or family who can help you take a walk. Some hospitals have things like stationary cylcling machines that are available for patients to use if they are able to do so alone, or, if not, a frind or family member may be able to come in from time to time and stay near in case you needed any help. The staffing shortages are unlikely to be resolved any time soon s(and are more likely to get worse beforfe they get better) so folks will need to come up with some innovative ways to get what they need. Maybe the nursing staff have some ideas on things to try, so it would be worth while to ask them or if you have an idea, as nurse what they think about it. Sometimes in trading ideas, even if you eah have a different take on something, you might come up with a 3rd idea that might work. I know I saw sometimes I was surprised at how these wver-worked, caring folks had come up with ways to get things done, just from their own personal experience, because they sure weren't taught how do to do some of the things and ways to deal with the unanticipated problems they encounter all the time.

Hi, @jatonlouise - tagging a few members who may have some thoughts about rehab and its effects on Parkinson's symptoms @rgriffinks @maxaz1 @hopeful33250 @foundryrat743 @mariemarie @jrwilli1 @ggopher @laurievr @ess77.

Hello, yes, I would like to comment on this subject. I have had rotator cuff injury and range of motion rehab, for a frozen shoulder. This was before I was diagnosed with Parkinson’s, and I was not hospitalized, where I was lying in bed for long periods of time! I have found that not being active, makes it harder to deal with having Parkinson’s! The stiffness can be crippling. I do range of motion exercises and watch videos, by the Parkinson’s Association, and participate, in exercises, specific to retraining my brain to improve my walking and movement abilities. In order to not fall back on a stooped, shuffling gait, I must regularly do these exercises, put on You Tube video, by the Parkinson’s Association!

When my husband would be hospitalized for some of his cancer issues we were quite fortunate that the Dr would make sure to order PT for him and the pharmacy staff would make sure he got his Parkinson’s meds close to times. He takes meds four times a day. I’m sorry that this happened to you. Please make sure you have an advocate for you because yes without the exercise you do backslide. Like I said we were fortunate.

I have had 2 experiences with rehab. Each was disappointing. Both were before I had my PD diagnosis. Each were t he result of a batch of tests that were considered inconclusive, although all agreed that something wasn't right. I think PT was a "What the Hell, may as well" effort to see if that would help. thi

know what else to do. In fairness, I had no classic PD symptoms and other explanations were either ruled out, or had been successfully treated so they couldn't explain the fatigue (high BP, high chloresterol, and asthma all treated and under control,; diabetes and POTS ruled out based on test results). But clearly the
profound fatigue had rendered me bedridden. I belueve that thr common thread in my experience with both efforts with PT is simply shortsgr of heathcare workers. The first effort was a 21-day stay in a hospital , where I was supposed ti hsve 2 PT sessions every day ( so should have had 42 sessions.) BUT (a) no PT on weekends so 3 weekends = 6 days of 0 PT, or holidays =1 more 0 PT so missed out on 14 sessions for that. There were only 2 therapists and one was on vacation for 5 days so reduced # by another 5 . sessions. (b) I could not shower alone and needed help and each assisted shower counted as 1 therapy session. I had 3 showers. I was on the geriatric ward and many of the other patients needed helo with eating and often the therapists helped with that. Even on those remain days , with both therapists on board, there were only 2 days when I actually had 2 sessions and some of the remaining days I had no sessions at all.
Of the 42 sessions I had expected, I may have had a total of 8. The 2nd round was Outpatient. I would ve pucjed up in the morning, spent fron 9 until 3 in the rehad center where a hot meal was served. I was picked up 2on Tuesday and Thurs. one week and the next week a MWF. I eas suppised to gave 1 occupationsal therapy session and obe physical therapy session each day. The occupational therapy eas a group thing and there were maybe 15 patients in each session. Every day I was there, I had occupational therapy. But it wasn't individualized but just sone exercises dione in a chair and depending on what the therapist was up for that day. Over a period of a month (10 days), I may have had 5 PT sessions. It was whatever the therapist felt like doing tgat day, ratger than an individualized program fir what I might need. A hot meal was served at noon. There were several room where you waited beween therapies. From a high kevel community oerspectivr, this program gave "shut-ins" a day out ivf their home * and their care-takers a break. It gave the old folks a cgancee to et out and siocisluze, it gave a hot meal , esoecually for those who lived alone. But from ait didn't really offer any individual plan or goals to make my life any easier. The main thing wS tgat it gave my husband some free time, which he certainl needed and deserved for having been and done every thinhg for me for 3 years. So, knowing all of this, what I would do if a round if physical therapy was proposed to me, us to ask precisely what it will do for me and how it is structured. I now have physical therapist who comes to my home twice a week and I tell him what hurts or what I need and he works on that. You could also go to a physical therapist with an individualized plan for you. Sometimes the 'Group Gropes' could be both useful and fun and maybe you can get something individuakized for you. But don't dare to jump inti something without asking lots of questions and knowing what it is and what it will do for you. Mayne and overall evaluation by a physi al ygerapist wjho can tell you what you need. Xand drsign sinething for you, whether it's doing sme exercizes then maybe using videos to guide you. So many options, but you nerd to actively pursie what you ned rather than golet ibto sone cookie- cutter situaation like I did.

Hello @gregopp211,

I am sorry for the negative experience you have had. Unfortunately, your story is all too common whenever a PD patient is hospitalized or in a rehab center for an extended period of time. The link to the Hospital Safety Guide that @jatonlouise posted is excellent! I would encourage all PD patients to read it before a hospitalization is needed.

The factors that are most important for a PD patient who is hospitalized are getting the medications on time (in the way you would take it if you were home). If you read the brochure that was posted, you will see lots of ways to make your medication a priority with the hospital staff. Another important point is the need for movement during the day. As the medical environment is undoubtedly stretched for staff and resources, it will take a "care partner" to be sure that you can get up and move around regularly so that stiffness/pain does not set in.

Having a care partner who can be with you to remind the staff of your medication and movement needs is really important. It would be a good idea (before a hospitalization) to get a list of care partners scheduled who can be with you and help make sure that your needs are met.

The use of other medications, especially for nausea, sedation, and pain, is also important. To have a notice, perhaps posted above your bed, with unacceptable medications (you can find the list in the brochure about hospital safety) is a good idea.

PD patients can undoubtedly survive a hospitalization or a rehab facility, but it does take careful planning and persistence to make their needs known.