My husband was diagnosed with PSP 6 mos. ago. I’m sure he has had it for a couple of years at least. His main problem is freezing when beginning to walk his unsteady walk, and inability of rising from seated position. He still can use just a cane to get around but walker for longer walks. Another major issue is severe bowel events frequently when eating out or sometimes even at home. He is very slow so can’t make it to a bathroom in time. Is this something others have experienced?
I would love to find a support group in SF Bay Area
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Sfen
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You have found one! The best there is! And it is worldwide. I live in New Zealand. Someone in USA will no doubt respond soon.
Yes. We are familiar with gait freeze, and the messier side of life that comes with PSP & similar disorders. We find this is a great spot to laugh at our misfortunes, and vent when life gets tough and need hugs.
Sorry to hear, my husband also has PSP. We live in the San Diego area. I hope that you have a good neurologist and PT/Speech team. They can help a lot. All that we can really do is treat the symptoms, and try to prevent falling and choking.
Kerry
Welcome. This is a good support site. There may be one in your area. Incontinence is part of the disease. Larry swings from too loose to constipation. I have to adjust stool softeners and laxatives to try to regulate it.
This looks to be the closest to you:
Support Groups
Support Group for Caregivers of PSP/MSA/CBD Patients
2208 Bridgepointe Parkway, San Mateo, CA, United States
San Mateo, California 94404
Meeting Times: Every 5 to 7 weeks, Sundays, 5:00pm - 7:00pm
Facilitator(s): Robin Riddle, 650-814-0848, robin.riddle@brainsupportnetwork.org
Sfen, I ditto Jeff's suggestion. Robin Riddle at the Brain Support Network is your best source. I'm in the California Central Valley so it is a little too far for me to travel to San Mateo for an evening meeting. I would have loved to attend their meetings, but could never manage it.
Welcome to this site. You will get a lot of support here as you make this journey. I wish you well.
Pat
Welcome to a group no one wants to belong to.
These are things that may help you if have not already done so.
Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.
Do your research,do ask here or use the search bar on this psp site,so many knowledge people here with first hand experience.
Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.
Hi - and welcome. This site is a fantastic resource and friendly and helpful. No question is silly and you can let off steam as well. I am in the Bay Area and the San Mateo group is the closest. Just email Robin Riddle for the date and time if the next meeting. I haven’t been to one yet but am hoping to make yo the next one in June I think. My husband was diagnosed with PSP two years ago and we definitely need support of any kind. Good luck.
Yes. You have been advised of the best group run by Robin Riddle. Some of us have created a small subgroup that meets in West Contra Costa. If this is convenient let me know.
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hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
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