My mom with psp says she wished she could just feel better! She says she could cope so much better with all that psp has given her, she has no balance, can't hardly talk, can't walk by herself, trouble swallowing, can't move her eyes etc... IF she didn't feel so bad!! She's not in any pain, she not tired, not aching, she says she can't really explain it she just feel horrible!!! She has told me this for 2 years. Just wondering if anyone else has experienced this?
Thanks Alli
Hi Reidallison,
Does your mom indicate whether its a physical pain or a psychological pain she's experiencing? What do you think? If she isn't taking an antidepressant yet, that may be something to consider that would help lift her spirits. I found it made a big difference for my husband: he was feeling quite despondent and after starting the antidepressant his mood was smoother and he felt each day was more ordinary (as opposed to a tragedy..)
Anne G.
Anne G,
It isn't physical pain, it almost seems as though she doesn't feel pain, it strange I seen her smash her finger one day and she never flenched and never complained and I have noticed the same on other similar things. I did think about an antidepressant, but she won't take it!! She seems to be over sensitive to any medication, she swears they all make her sick, she has taken one before for maybe six mo. But the dr was constantly changing dosage because it was making her sick ( I don't recall at the moment what it was.) I've ask her over and over and she just says just a yuck sick feeling. She's perfectly healthy other than psp.. no meds at all. But we may try again
Thanks for your advise
Alli
Good luck Alli;
One of the hardest things with this disease is not being able to "do" much for our sufferers. We do our best to look after symptoms, but ultimately we're ..what's the word..palliating?..just trying to keep their quality of life as free from pain and discomfort as possible until it's over. So sad and so unnatural to not "fix" things for them!
Hugs to you XXX
Anne G.
Hi Ali
Is your Mum feeling dizzy?
Experiences the room 'swimming' around her.
It's quite common with PSP. I understand its part of the middle ear / brain balance processes. Technically called vertigo.
Just a thought.
Best
Kevin
Hello Kevin, my mom does feel dizzy at times, it comes and goes, back before her diagnosis of psp, I had taken her to an ear nose and throat dr and he said she did not have vertigo, because that's exactly what I was thinking , but like I said it's not always there. The bad feeling is the one thing that always there. Thanks for your infor!
XxAlli
Hi Alli
Your clearly on top of it. I thought I would mention the dizziness. Communication can be so hard.
Wishing you both the best of it.
Kevin
xx
Chris always said " terrible " when I asked him in the morning how he was.
He also had no pain, apart from occasional headaches or hand or feet. He was stoical and not depressed but didn't feel ok for years.
Pre- PSP he was very healthy and energetic.
x
That's the same with my mom healthy as a horse until this!!
XxxxAlli
The GP examined him and said, apart from PSP he was a healthy 82 year old !!
Larry says as long as he doesn’t try to walk or talk he feels fine. He is. His health otherwise is very good.
Hi, I actually just asked my mom if she feels any better when she lays down and her reply was " I wish "!!! So I don't know what to think or do. She does get real worn out when she talks, even if it just a minutes worth. I just hate this for everyone!!
That you for your input
Alli
Larry says it hard for him to articulate. I have to ask him what he said most of the time. I repeat back to him what I understood then ask him to fill in the words I don’t. It tires him out. The more fatigued he is the worse his speech gets.
I can relate, I generally feel ok except when I walk or talk. I feel for my wife, she is so good to and for me, but I keep telling her I have nothing to say to anyone, although I do try. Blessings, all, Gary
Yes think it is all part of psp George has spoken for a few day, looks so miserable, says he doesn’t feel well, could go on and on xxxxx
Hello , I figured it must be...I'm so sorry!! You hang in there!! You can do this!!! Big hugs to you and george!!
Xoxo Alli
This is what my mum used to say too. We tried to get her to be more specific. She would just say she felt rotten. Sometimes she would say she felt drunk !! She never said anything about any of her symptoms and it made everything very difficult.
My mom also said she felt drunk mostly when walking, this was a year or so ago, then I would ask her how do you know what it feels like to be drunk!!! Then we would laugh!!! So I finally got a better discription from her, she informed me...That She feels SICK!! Bless her heart. Bless everyone with this horrible disease!!! Bless every caregiver as well!!
XxxAlli
I think Kevin is right regarding Chris. The first symptom he went to the GP about, years before diagnosis, was feeling dizzy. He also had hearing problems and so that was the focus for a while.
I think he probably felt giddy a lot.
Did the dizziness come and go? And also double vision with my mom, but the both seem to come and go, but has had these symptoms quite often!
Yes. He had both of these quite often. He was limited in how much he could watch t.v.
dad eventually went to GP with dizziness but like that couldn't describe exactly how he felt....like others he described and describes himself as feeling like a drunk man all the time. he had been saying for a couple of years he just didn't feel like himself. think earlier on he had an awareness of the u unusual apathy and changes in his mood, interests and socialization. feel guilty now as we thought he was just getting Moody with getting older. so hard not being able to help them with symptoms xx
My mom doesn't think she had any symptoms prior to the tmj.. but she did!!! But like you said, to look back she had done and said a couple of things that was sooo out of her character, at the time I was speechless by her actions, but now I can't help and laugh, I'm sure it was psp showing it ugly self back then. Xx Alli
My mum is the same 😑 we gave her antidepressants saying they were vitamin pills. She was OK with vitamins but not with any other meds. They definitely lifted her mood. Might be worth a try x
Hmmm hadn't thought about that!! May just check into that!! Thanks a lot for the idea!! Love Alli
Is it possible to arrange little treats to give her something to look forward to?
My husband became extremely upset recently and so our live-in carer suggested taking him to watch his favorite football team, that he actually did yesterday. They lost by the way !!
However it animated him and he really enjoyed his day out.
I'm sure this would not animate your mum!! but maybe things like booking a massage or manicure or similar.
If you have the funds there are travel agents who can help you to book a holiday tailored to fit around your mum's needs.
We went to Barbados in November using a specialized agent. We had everything we needed for me to care for Geoff and keep him safe.
Geoff now needs all personal care including being fed and so it was a challenge.
We went with friends, for me it was hard work but worth every moment because my husband enjoyed it so much.
I hope this has helped.
Take care
Pam
Oh Pam that is awesome that you was able to take a vacation like that with your husband and I am so thrilled he enjoyed it.. that's just wonderful!!! I do try to take my mom out, but she says she's miserable the whole time,, I think mostly because of her eyes!!! Although I take my mom to her beautician every Saturday morning to get her hair all fixed up. That is something that my mom has always done . I could probily do it myself
(Maybe) but as long as that makes her feel good about herself getting dotted on at the beauty shop!! I will continue to take her as long as she can and wants to go!! Thank you so much, I never thought to much about this until now... my mom was always used to being kinda pampered with pedicures and manicures, pretty polishes... she may not be able to enjoy horse back riding anymore ... but I can and will make sure she still gets her nails painted pretty!!! Thank you again!! Alli
Another thought.
Anti depressants? I know they have been mentioned.
Your mum might need the dosage increased.
Geoff is on 2 called Vensir XL 75mg and Venlafaxine 37.5mg 1 each evening. xx
I've wondered about travel with hubby..Did you find a place to stay where there was a shower/bathroom that would work? Or did you do sponge baths or..?? I think I can handle the dressing, feeding, transport etc...
Are you UK based? If so I can send you some information. xx
Oh and to answer your other questions.
We stayed in a lovely hotel in Barbados.
We had a walk in wet room and a wheelie commode chair so that I could wheel him in and out of the shower and because he struggles to sit backwards (due to his core being rigid) I used the commode to wheel over the loo.
They provided a mattress cover, he wears a convene at night and sometimes it can come off. They were so understanding when I needed clean bedding.
The flight was with Virgin and again they all went that extra mile to ensure Geoff was safe and comfortable.
Hope this helps and am happy to give more info if you would like xx
Thanks Dottie;
I'm in Canada, but its good to know the travel industry is starting to accommodate disabled travellers that well!
Cheers 
Anne G.
Yes. Dizziness and visual problems came and went. Apathy there most of the time. Looking back many of these things were evident for years but not recognised at the time. The main regret I have is that I could have been more understanding if I had known he had a disease but we didn't. When he was diagnosed I did my best.
It is so difficult to be understanding and " nice" when you are tired and stressed. Now I wonder how I managed for so long. Its a nightmare journey.
love, Jean x
Your comments are very familiar to my mother's experience and condition. She received some relief and benefit with a protocol of CoQ10 and Amantadin for about 6 months, but eventually these were no help (as the Dr warned). She has been battling with her PSP for about 6 years now and it has taken a toll. Dr Goebel at Rutgers University is a recognized expert in PSP. He perscribed the C0Q10 and Amantadin, which helped for a bit.
Thank you for your reply, my mom did take coq10 for awhile, but never could tell a difference. May check into the Amantadin. Do you recall how much Coq10 your mom was taking, I always felt like my mom was taking such a low dosage that it wouldn't have helped anyway, but I didn't want to give her more than her dr had told her to take. Best of luck to you and yours, Alli
Yes, she was taking a 100 mg capsule three times a day, typically at meal times. I take two a day now and feel a bit more energetic. I have had fatty liver for 40 years (diagnosed), which tends to make one feel fatigued at times, so the doctor said yes to my question on taking it. I take a 100 mg capsule at breakfast and supper.
Ben started with apathy and not wanting to socialise, he had a high pressured job so I thought it was depression due to stress, he was issued with low dose antidepressants which helped lift his mood. I was disturbed by his staring and used to say "please stop staring at me. It's weird" feel very bad about that now! He then complained that he felt drunk all of the time and had various war/nose and throats investigations, brain scan for tumours and so it went on for over a year. Falls and imbalance became more frequent. A nurse friend suggested seeing a neurologist (I requested he be referred by the GP) The neurologist immediately thought PSP and referred him to a movement specialist who confirmed (as much as is possible) that it was PSP. We are now 3.5years from diagnosis and Ben is totally dependent on me and carers, speech mostly indecipherable, spoon fed and has continence issues. It makes me so sad to see him in such a vulnerable position when he was such an independent proud man. All I can do is keep on keeping on to love and support him, hopefully to the end.
Love kate xxx
Wow, reading all of these replies is enlightening, my husband is right there too. Says he feels terrible all the time but no specific ailment or pain. High pain tolerance makes recent fractured hip hard to medicate. Seldom does he say it hurts, but know it has to. Five weeks ago yesterday fell and broke Femur near hip socket. Hospital 5 days, Rehab three weeks. Home now but very depressed even with drugs. Can he have worked a resistance to them? Been on Fluoxetine 4 years now, recently added Bupropion, can’t really tell any difference. This morning kept saying, “woe is me” over and over. I don’t know what to do, so sad for me and me....
I don't know much about any medicines, sorry. I have heard that medication only works on psp patients for a while.... but don't take my word for that, I just heard that don't know for sure. I just wonder if the psp makes them have a high pain tolerance, because my tiny little mom sure does she's 5 ft 95 lbs and almost seems to feel nothing!! I'm so sorry about your situation, it's hard enough day to day without adding broken bones!!! Hoping tomorrow may be a better day!! Keeping you both in my prayers!! Hang in there. Love Alli
Kate,I'm so sorry to hear your story. Ben is very lucky to have you!! It is so hard to watch the ones we love suffer or hurt in any way!! I know how you feel my mom also was such a honorable, proud, classy lady !! This is just horrible, it strips them of all their dignity!! I know it's hard , sound like your on the right track .. Love and Support is what they need!! Keeping you both in my prayers
Xxxx Alli
Feeling helpless😢
End of life
Please God, if you are listening or reading this!
