PSP Symptom: One of my husband’s symptom, as... - PSP Association

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PSP Symptom

Bipa
Bipa

One of my husband’s symptom, as I mentioned in the past, is flailing as he doses off on his chair, followed with drooling, incoherency, weakness in his legs and unable to speak clearly (stroke-like). This lasts about 20 minutes. We are visiting our son in Toronto and he got all in a panic because I would not rush him to the hospital. I do not do that anymore because he recovers. Yes, it frightens me every time, and yes, I do worry that I may not read him correctly but cannot be requesting ambulance every time.

Is there anyone out there that experiences this and please respond to this, letting me know what you do each time. Sometimes I am made to feel inadequate and am very sensitive to someone questioning me. My husband has now had PSP for 12 years and definitely progressing downward - slowly!

Vera

16 Replies
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Dad never exhibited the flailing you mention. As far as calling an ambulance when it happens, dad's doctor gave me some good advice. Lots of blood, possible broken bones, head strikes, breathing issues, possible heart attack all need to be handled by medical personnel. Unfortunately many things are a symptom of these disease and just have to run their course. I've spent many hours in an ER just to be told by the staff they aren't sure what has happenex and be sent home no wiser then I was before.

As for people making you feel inadequate by questioning your methods, well let's just say I've put more then one person in their place for comments they've made. As dad's doctor said..I knew more about the disease then he did and he learned things from me.

Bipa
Bipa
in reply to Dadshelper

Thank you so much for your response and encouragement. I just have to continue looking after him the best I can and when I cannot, will deal with it then.

💕Vera

AJK2001
AJK2001
in reply to Dadshelper

That is such good advice about when to call an ambulance, sitting in A&E just to be told we don't know does nobody any good least of all the patient.

I think your doing the right thing. When Larry has an epsisode of something I compare it to past episodes. I ask myself is it the usual choking, flailing, delusions or is it on another level. So far wait and see has been the best course. When it moves beyond the “normal” I know.

Bipa
Bipa
in reply to Jeff166

I like it what you said “when it moves beyond the “normal” I know”!!

Thank you Jeff

Jeff166
Jeff166
in reply to Bipa

I knew you would understand.

I have had the same thing happen and didn't call the ambulance. He recovered soon, and I have always wondered if I did the right thing. He also has similar symptoms when he is stressed. The home care nurse practitioner was here today and said that is normal. He just started a new home care program ( U.S., Illinois) that sends doctors and nurses to our home that is wonderful. I feel so much better knowing a nurse is just a phone call away, and they help coordinate his care, and I feel less alone in this sea of uncertainty.

Are you paying for this home care? I am in Nebraska and the Medicare only comes a few weeks and the service stops.

Medicare and BlueCross pay for it. Homebound care is a new division of JourneyCare located in Northern Illinois. They originally did only Hospice and Palliative care. Sorry I am not familiar with other states.

Thanks for the information. I have Medicare and BlueCross but afraid we do not have the homebound care. I will certainly check. It would be so welcome at my house.

The next time I talk to them I will ask how to find similar services in your area. They told me this is becoming more popular.

Thanks I really appreciate that thoughtfulness.

Remember that you have the most experience with your husband's ups and downs, the most. To those, family or not, who have not had that experience, PSP is frightening....even to us who experience it (or like me who HAS experienced it).

People mean well with their suggestions. I am 78 years old, and have observed that those who have UNSOLICITED advice have never experienced what is happening. Lucky if they have read or knew someone who has. As an example, we all have opinions/advice on addiction, but most with opinions have never lived with an addict.

2nd thoughts..... what ifs, why didn't I, I should have, etc, are all part of caring for one with PSP. For what it's worth I think you made the wise choice. Going in and out of emergency/Urgent Care can be difficult on one who has PSP. My son once had a seizure, VERY FORTUNATELY the visiting hospice RN was visiting. She instructed me to give him oxygen (my son hated wearing the tube) and get him in bed. My son was out for over 9 hours. I was at peace because the RN had made the decisions. I often think that family that wants the emergency staff to see the PSP symptom, really wants the security of the "correct" decision, forgetting what the PSP person is going thro by being hurried to emergency/Urgent Care.

Blessings, Margarita, Los Angeles, CA, USA

My husband does the same as he drifts off to sleep. It is a sleep disorder associated with Parkinson’s, PSP, MSA, etc. Dr ordered klonipin to be taken 30 minutes before bed, and it helps.

Bipa, after 12 years no one is more of an expert than you! Don’t let anyone else make you doubt yourself. It’s such a nightmare for anyone going to the ER, and PSP JUST INTENSIFIES IT. My mom’s neuro said excessive blood or potentials breaks were the only reason to go. We did have MDs coming to us also, especially once we started hospice (which I think most psp diagnoses qualify for), but trust your own instincts. You know better than anyone! And if you don’t have access to free/affordable home docs, then consider reaching out to hospice. It is a wonderful service and most often underutilized or started too late. Peace

You are so kind. Thank you very much for the encouragement.

Happy New Year to you and your family💕

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