We're on one of those plateaus where we have adjusted to a "new normal." Sometimes during one of these lulls, where things seem to be stable, I start to wonder if my husband really has PSP. Maybe it's something much milder than PSP, like his spine is causing him not to walk. Then I start to think of the other symptoms like all the times he fell over backwards, and the shuffling and tiny steps when he was walking. He quit walking maybe about six weeks ago and then a couple of weeks ago he was no longer able to stand at the bathroom sink, holding on, while brushing his teeth. But, no new symptoms for a couple of weeks now. We're constantly adjusting. It's nice to coast for a while...maybe he won't get worse.
Just some rambling thoughts tonight.
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journeyofjoy
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If physicians agree that there is suspicion of a Parkinson or a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other.
One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.
Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.
At this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.
Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. However if you didn't feel any difference then maybe it was not working for you.
Thank you Luis. My husband does have PSP (at least to the best diagnosis of the doctor). I was actually just saying that sometimes when things seem stable, I start to think that maybe it's not so bad - and would like to think that perhaps he has something else. Usually this stage doesn't last too long.
As far as exercise, it's a great idea but my husband is beyond that point. He can no longer walk even with a walker and cannot stand for more than a moment and even then he needs assistance. His speech and swallowing are not affected at this point, thank goodness. I don't know if we should be using a speech therapist when there are no symptoms yet.
PSP disease, in general, affects ALL the muscles of the patient. The motto that presides our actions in physiotherapeutic matters is that "what does not move is lost."
It is admitted that the movement, the autonomous and voluntary effort made by the patient has significantly more therapeutic value than that exclusively performed by the physiotherapist. In spite of everything and according to our experience, systematically carry out an exercise table, although the patient contributes little effort, and where the more muscles are put in motion, the better, it is a clearly positive strategy.
Speech, swallowing and choking reaction also depend on muscles, so including a speech specialist has been part of our strategy from the beginning.
The worst of all this is that the effort made by all does not improve, nor does it contain the progress of the disease, it only slows it down and that requires caregivers a great strength because the effort does not provide bright counterparts. Moreover, it can even be pathetic.
I can say that, after almost 8 years living with PSP, the food we supply does NOT need to be pureed, choking is resolved with relative ease and we have not had any episode of pneumonia.
The patient can barely move autonomously but still many muscles are still NOT completely rigid.
In summary, according to our experience, establishing a strategy of general and systematic gymnastics has been clearly beneficial and we believe it was worth it.
PSP has these plateaus but it truly sound like PSP to me. Everyone is different and there are I believe 16 variations of the disease. You are doing a great job. Just keep adjusting.
Thanks for your comment today, it made me smile. Even after my diagnosis and all the symptoms and tests point to the fact that I have CBD, my wonderful husband was insisting all I needed to do was go to the chiropractor!! I actually did go for awhile, just to make him content that we had tried everything. My symptoms, like everyone’s, have ups and downs. I think that’s what makes it so hard to truly accept. Thank you for sharing your feelings and love for your husband. I know it’s wonderful for me to have my hopeful warrior on my side.
I clearly remember the denial stage, then the anger and finally acceptance. It took a long time for me to believe it but having a name for it finally made sense as nothing else seemed to fit all of the symptoms. Now that we have an idea we can attempt to treat the symptoms and try to take one minute at a time. Live in the now and make the best of each day.
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