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Topic musing, falls, stages and random thoughts Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.07.11 00:08
On the subject of falls. Although alarming and dangerous 4 falls a week really isn't considered that many. When first training balance or walker dogs for Parkinson's patients back in late 1980's and early 1990's in conjunction with a PA. Hospital's Parkinson's Disease study they were hailing it success finding the Dogs were limiting patients to 3 or 4 falls a day! These People were falling at a rate of 30 to 40 or more falls every day. (some reportedly were over 50 falls a day) I have a friend with PD who falls (conservative estimate 25 to 30 times a day) I've seen Him fall several time within a minute or two when visiting him. It seems almost every time he stands up he falls over and last time I was over His house He crawled around so He wouldn't fall over. This disease is so damned confusing and can present itself so differently is each person it is literally maddening at times! It truly is a case of just when you think you have the answers it changes the questions!

I don't know why I posted this, it wasn't meant to scare anyone, maybe it was in response to the "stage" question. I personally don't care for the "stages" as they were written what 50 years ago? and a lot has changed since then. They are kind of like asking a guide which path to take when there is a freeway right in front of you. Maybe it is because I was a young on set and have been around fighting this disease so long, having entered my 27th year of fighting the disease. My friend who falls so much is also young on set and has entered his 28th year of battling PD. Maybe I just posted this because I'm uneasy? Scared? It's been a long fight and I realize it can't go on forever? Maybe, just maybe because those stages...sign posts creep into my thoughts every now and then and I'm in no rush to reach the next one because it can bring problems other than those described in a sentence or two the way they are written? Maybe because it feels like the tremors are ready to burst loose today and tonight? But ah the next dose of med's is due soon and they'll subside again with luck. Then again as I sleep tonight will enough brain cells die off so the med's don't control as much and adjustments will be needed with the hope some of the control will be regained?

Random thoughts running through a PDer's mind late at night. Not pretty at times, scary if you think about it not knowing from one dose of medicine to the next or waking in the morning to a newer harder set of challenges. But some have voiced from time to time a view from inside Parkinson's helps them understand better in a few cases. Take care, best of luck and hang in there!

By Reflection On 2012.07.11 11:23
Dear Al - I hear in your post that you may be falling more often, and it is scary. I don't know if it helps, but my sense is that falls are scary in that they may lead to injury. A while back, you kindly helped me understand that levadopa may lead to bone thinning - so care is in order. That said, I would guess that with dear Tess, with carefully setting up your space for soft landings & stuff to grab onto when you feel unsteady, any falls you may be experiencing won't be more than an annoyance for a long time to come. My guess is that falls lead to broken bones much more often the older you get - and you are still young. I sure hope that's what your experience will be. I'm rooting for you (and for Tess!).

By LOHENGR1N On 2012.07.11 19:46
Reflection, thanks, I'm not falling more often I was just referring to a posting as many new to this disease are concerned when falling starts once a day or a few times in a week. Just letting them know why many Neurologists sometimes don't show worry about it. Plus you know what we say, falling is easy the landing is what's hard!

I guess what is bothering me is my Neurologist has asked a couple of times lately if I want to cut back on some of my med's. As I said I've been having days where it feels like my tremor is ready to bust loose and run amok. It is way past any honeymoon period and the drugs are off and on and working for shorter periods of time (when they are working). This is why for the new comer's that most Neurologists hold off for a time before prescribing medicines because they have a limited time period they work to maximum then they are sketchy at best. They try to administer the med's to give a quality of life for the longest period of time possible because when they don't work then you are left at times with nothing else to try.

Way back at the dawn of my journey I asked when told I'd be taking the drugs the rest of my life once I started them. How long will that be? With a sign I was told 15 years maybe 20 if lucky. (a hard pill to swallow at age 33) I retorted gee I was hoping for 25 to 30! That was back when not many medications were out for treatment of PD and early on set was almost unheard of. I guess I proved Him wrong now that I'm in year 27 what I have to do is now prove myself wrong!

It just gets to even me the eternal optimist at times when it's been a boarder line day and the night is getting late. As I said some have said getting the point of view from inside the disease helps them so from time to time I just type it like it is to get the feelings out and go on. At times my view point helps them with what is going on with their loved ones. Sometimes they are just that my view point looking out from inside the disease and worries about the future. As I said I have to type them out to air them so I can go on fighting this disease. Again thanks for your encouragement! Take care, best of luck and hang in there! Tess and I will continue to battle on!

By parkinit On 2012.07.16 10:37
Falling 25-35 times a day. Lo, I have to wonder in the sanity of allowing that to go on. What about a wheelchair, power chair, etc.? I saw my spouse fall 7-8 times one day resulting in many hits to the head and an eventual brain bleeding that required surgery.

Again, I can't imagine the sanity of allowing that to continue as it is eventually going to cause irreparable damage or death.

What is even more frightening to me is that possibly this person who is falling so frequently lives alone. If my spouse was living alone, he would be dead now as he wouldn't have gone to the doctor without my insistence after so many falls in one day.

I guess what I'm trying to say is that I'm worried about the person who falls 25-35 times a day and nothing is being done to stop this horrible nightmare this person has to "look forward to" each and every day.

By LOHENGR1N On 2012.07.16 13:48
parkinit, My friend who falls so many times doesn't live alone, His wife recently had to quit her job to be home with him. He does have a wheel chair but doesn't like using it. He's been on either meripex or requip for many years, so I'm thinking along with the other side-effects of the drugs I think they may make judgment wane? (well besides the porn and gambling and shopping others have mentioned).

By Reflection On 2012.07.17 09:48
I'm a repeat poster on mirapex/requip - but yes, they sure do make judgement wane. With too much, the person taking them can become grandiose, manic, believe they can do more than they can. "Impulse control disorders" is one of the names - and in my experience, there's a kind of "if I want it, I'll do it" - whether that's porn & gambling & shopping or just, eg, walking across the room. And that's how it leads to falls. I caution again - my husband was on 2 1/2 times to max FDA approved dose (60 mg vs. 24 FED approved) of requip - so this may well not apply to those taking more reasonable doses. He's been in much better shape, both mentally and physically, since kicking the requip.

By parkinit On 2012.07.18 16:26
I even see that response (everything mentioned above) with too much carbidopa/levadopa.

I mentioned this fact to another who sees my PWP weekly. I asked, "Do you notice that with "feeling good" also comes poor judgement?" The other person responded, "Well, now that you mention it, yes, I do!"

I think this is something that is missed in the "clinical studies." Is there a category for simply "deterioration of judgement???"

It has to be the caregivers who note this, as my PWP would swear that his judgement is not impaired and he truly believes this. How would a clinician see this who has just met my spouse?

Sometimes afterward these poor judgement episodes, my PWP doesn't even remember the poor choices he makes!!

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