Today, my father learned he has PSP.
We had known for some time and were trying to find a way to tell him. Eventually, he found out on his own and sent me an email.
My mom said he's been crying all night ☹
Should we consider medication or consulting a psychiatrist to comfort him? I am afraid he might harm himself.
Any advice would be appreciated during this tough time.
I’m so sorry for your father and you and your family. It’s hard news to take in. The shock is terrible, but should lessen with time. The grief seems normal to me. Whatever physician is most involved with his care might be able to prescribe anti anxiety or antidepressant medications. My guy talked to a therapist just twice. Showing love and care is important, but if you think he might harm himself, I think professional intervention is necessary as a first step.
Agreed, Sarah
Thank you 🙏
Would you need medication when told awful news? Does he normally need it?
I think you need to let him grieve he’s only just found out and his reaction is totally normal. Be there and supportive when he needs you.
Hi priest78!
I’m so sorry for your father and you and your family.
These are our experiences and information:
With the information that I have been able to obtain so far, 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. After those years in which L-dopa works, the disease generally evolves to a type of PSP, frequently RS, CBD,...).
However if you didn't feel any difference then maybe it was not working for you and suffer from other variants of PSP.
Most people only take medication for symptom control.
• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.
(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Kevin_1:
healthunlocked.com/psp/post...
Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :
karger.com/Article/FullText...
“Zerachiel” Point out: “It may be worth looking into the drugs the patient is on at the moment, Amantadine for example can cause problems with sleep.
Big risks:
A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations once overcome are often accompanied by some increase in the PSP symptoms and a decrease in the quality of life.
Physical activities:
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. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.
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
Hug and luck.
Luis
Thank you Luis 🙏
Hi ..... PSP = "Please Stay Positive"! I am 82 male, diagnosis 5 yrs ago, upset my life has taken this course, so taking charge of it with diet, supplements, targeted exercise and therapy. I will die sometime anyway, so am now putting my energy into living as effectively and fully as I can. Best wishes to you for the challenge! I can send you 7 pages of help tips and my experiences, if you send my ur email address. Cheers TimbowPSP
It's been a few days, how is it going? Is your dad coming to terms with the diagnosis at all? My husband already knew a lot about PSP when he got his diagnosis - so he reacted strongly and I had to stay close to him, he kept apologising and suggesting I should put him in a home and leave him. For many months he would have spells of crying uncontrollably and saying he didn't want to live with PSP. However he would bounce back quickly and be laughing uncontrollably instead. I suspect in hindsight some of the crying was the pseudobulbar affect (PBA). On his first clinic visit he was prescribed a mild antidepressant (citalopram) and his mood became a lot more stable and primarily positive and highly motivated.
I would remind myself he is a human first and foremost, and a PSP patient as well. So give human comfort and support to help him through a difficult period of change and loss. It will take time. Help your Mum reassure your dad that he has not let you down and that he won't be abandoned - and check with the doctors as well about managing symptoms including mood and depression.
Best wishes for the journey. Hope and hugs. 🌻🫂
PS it can be overwhelming to read too much too early. I would really recommend reading "The PSP Chronicles" by Tim Brown - telling it from the patients perspective. Tim has a warm sense of humour, positive outlook and strong faith and I think this can be helpful both for your dad and those around him. Life with PSP is life - with some added difficulties
Thank you very much! I've traveled to the city where he currently lives to support him. He seems to be getting much better in terms of accepting the fact. The shockwave will pass. I believe the best approach at this current stage and ongoing is to show love and care. Nothing would help more. We will livr and discover together...
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