This post probably isn't what you're thinking it is. If you'll take some advice from an "old hand" with Parkinson's Disease, don't ever give up! Not even for one day! Parkinson's doesn't, neither should we! I say old hand because of my time in battle, at 58 soon to turn 59, I was diagnosed at age 33 so I've been at this awhile. Fortunately I still have most of my cognitive abilities intact. The one sure thing it's taught me so far is that the "bad days" early on will be viewed as "good days" as time goes on. I know and remember way back those bad days when I just felt like turning over and staying in bed. We can't do that, we have to push on, if not what about years down the road? The "badder" days to come? What then?|
This is in My view one of the most important forms of exercise in Parkinson's Disease. The getting up and pushing on. And yes someday's it is or will be a struggle but a struggle worth the while. It sure beats viewing the world through a pane of glass before your time. The stark truth right now is We're not going to feel the way we did pre-Parkinson's! We ended up diagnosed because we weren't feeling right, because something was wrong and we went to seek medical help. As I said Parkinson's doesn't take a day off. Our medicines don't give instant relief like some advertised joint or headache remedies. They can help but not cure or even mask all our symptoms. Another exercise we need to practice and learn to do is to be easier on or more patient with ourselves! We can't do everything as fast or smooth as we once could and it can get frustrating. Relax, we have to take our time now, really we do. You have no choice. Like any exercise learning and building on these will help Us later on. This next one can lead to misunderstandings at times with family and loved ones. Self reliance, (some refer to this as stubbornness) We have to do and be able to do something's by Ourselves. This doesn't mean to try and be stupid and drive or operate equipment that can injure ourselves and others! It means we have to be let do things we still safely can do even if it takes Us longer and is a struggle at times. How else can we build techniques and ways to adapt in the future?
These exercises are most important and overlooked! Think about it, riding a bicycle, supervised swimming many of the "current", I say current because they seem to surface every few years as "the exercise" for Parkinson's. These exercises are akin to taking a toddler and setting them on a bike and saying go peddle along. I use toddler because that's what we're like just after diagnosis, wobbly, unsteady just learning about this life with Parkinson's Disease. If you put a toddler on a bike without them learning to walk and forming coordination skills they fail. But as we practice our exercises we learn we're going to wobble or fall off the bike, we're a bit more ready for problems doing other things so we don't get discouraged quite as easily as we would without a foundation of "exercising and learning". It's these exercises we must do everyday.
Caregivers too must exercise! I have one exercise you must practice above all others, restraint! This is a hard one and will take time to master! You must restrain from stepping in and doing for Us. This is one time the term "Tough Love" can be used. I know it breaks Your hearts to see your loved one struggle doing simple things! I know you're trying to help Us but if you step in and just do it because we're having a hard time or you hate to see Us struggle, you're setting Us up to fail, to succumb to this disease. That's hard to hear I know but we need to discover ways to adapt, to hang on to our self reliance or else we rely on You to do everything and soon resentment builds in the relationship. You have to do everything and we think you won't let us do anything. Both burnout! Caregiver restraint is crucial, it's not being mean, it's not uncaring it is enabling. You have to practice enabling us to function up to our abilities and not enable Us to rely upon you to do everything instead. If both members of the team exercise then later on in the disease the foundation is laid to where the caregiver can see and know the Patient is doing what they can to help and the Patient knows they still are being as self reliant as they can be and still have a sense of contributing. Now We've all got our exercises to do, we don't have to put on the sweats and make a 9:30 appointment at the gym. We just have to do it. Take care, best of luck and hang in there,