PSP Association
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Swollen feet and lower legs

My husband has been diagnosed with psp for about 14 months. He has swollen feet and lower legs. Is this common? His primary care did blood work and his heart, kidneys and liver are ok. My husband does walk at home, rides an incumbent bike and goes to PT each week. The only medication he takes for psp is trazodone to help him sleep. Any ideas? Thanks

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David suffered from swollen lower legs and ankles for a while. I think it was lack of activity in his case, but it could be a regular PSP symptom. It's so hard to tell sometimes.

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Hi

I've never heard of this as a PSP symptom.

Could he have vascular issues as a separate illness?

Or as Ratcliffe says...

Best to get a Doctor in.

Best

Kevin

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Don't think it is vascular. He is seeing a urologist next week to check those parts out to see if it could be prostate related. Poor guy.....

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Agreed

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Sorry to hear it Crotchetecat

Wishing you both well.

Do come back to us all.

Best

Kevin

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My guy had this. We thought it might be the selegiline, and discontinued it, but it was the foot and leg massage that the aide gave him every day (of the 4 she was here in the week) that really seemed to make the difference. It ceased to be a problem, but she kept on. He liked it. She was wonderful.

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Agree with easterncedar regular gentle massage helped my mum, try and keep the legs elevated. Also worth checking blood pressure as certain meds can cause swelling.

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Hi Crochetedcat: When I read your post, the "side" topics that came up included a post by Marytea13 from a few years ago on the same question. There were a number of relevant replies. Try the search window, type in her name and see if you can read that string. Good luck!

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My wife Mary, a psp sufferer recently diagnosed also suffers from swollen feet and I have eased the symptoms by elevating them on a large pillow when I put her to bed. She also raises them when using her rising recliner chair. This has helped by dispersing the accumulation of fluid brought about by her lack of movement.

On another issue, she gave me a scare on Tuesday when, after a wonderful new year visit by our son and a full nights sleep she suddenly seemed to give up and go into an almost catatonic state. I did a pinch test and discovered she was very dehydrated and began pushing fluids into her (water, juice and tea) and phoned the hospice nurse who recommended a doctors visit. By the time the Dr called she was well on the way to recovery. A salutory lesson to us carers is to monitor fluid intake!!

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Hi there, hubby has swollen feet and legs. The doc said it was lack of exercise as he doesn't walk much, he has problems with his knees which make him walk even less than he could. he has soft top socks but even they are difficult to put on at times and shoes with velcro fastenings so I can open them wide enough. And he takes tablets to make him wee as he had heart problems a few years ago. I have arthritis in my hands so unfortunately massaging is not easy for me. I did get him to have the end of the bed raised at one time but he wasn't comfortable so gave up on that !

bon courage

Dawn

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Sounds exactly like my 51 year old psp guy.....worse in the left ankle for whatever reason. He has no issues in the blood work either. Seems to be so random too! Can be better after a long walk or worse. Completely unpredictable. Elevation diesnt help. One day i will look down and his feet and ankle looks perfect...next day all puffy. Unfortunately this is the least of his issues on his psp hell ride as he can barely talk or walk anymore and hasnt been able to use his hands for anything for 2 years. I cant imagine a more terrible thing to go through....kelly

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Dad had swollen feet that seemed to be related to lack of exercise. Sonce we started BIG, it helped. BIG is exercise physical therapy use for those with Parkinson, also seems to help dad who has PSP

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The BIG program was VERY helpful to my guy.

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What is the BIG program ? I am in the US

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Lee Silverman Voice Therapy, LSVT Loud, which was designed for Parkinson's patients who have trouble speaking, gave rise to LSVT Big, for movement. They are widely recognized and available programs. Even here in Maine! There are videos online that will let you see what they are about. Both are intensive and require a significant commitment of time at home, but they did help my guy a lot, and I enjoyed the appointments and doing the exercises with him. As his abilities declined, the therapists changed the program for him. Insurance, Medicare, covered most of the cost.

Where in the US are you?

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Thank you. My guy might be beyond most of these by now...but at times he can shout and is clear. Very sliw walking. Arms shot. We are in NJ

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We would leave speech therapy and he could talk for a day. It was wonderful.

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Wow! Sometimes steve can just barely whisper anymore....i wonder and would love to try. He is declining so fast and sleeping a lot....was yoyur guys mind relatively sharp the whole time? I think steves is...

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i have the same problem but i just ignored it --mentioned it to my consultant who did not think it was a big deal-this is a symptom i would guess, and its importance is very variable from one person to another

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My wife, 52 and diagnosed with PD two years ago, and PSP 6 months ago, also suffers from this. I have found that elevating the feet and gentle massage to the feet and lower legs/calves usually helps. My wife's primary issues are with walking (she shuffles) and gait freeze. I fear she is wheel chair bound very soon, and she definitely does not spend much time on her feet, so I mostly attribute this issue to her lack of movement.

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