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!

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.