Hello All.
I am looking for advice. My Dad 72 at min. Has had a serious deterioration in his physical health. Was working full time until 3 years ago. His Aunty was diagnosed with Steele Richard Syndrome in the 80 s. He has all the symptoms of this but smashes every mini mental test but his body is failing. He has photophobia and real difficulty swallowing. Has anyone has the same problems Xx. Also had multiple MRIs and Ct scans ☹️☹️
Hi LovePaul , Very sorry to hear about your Dad's illness. From what I've learned through ongoing research and hands on experience while caring for my sister, the intellect of PSP afflicted people will often remain fairly stable. The ability to utilize it can become impaired due to memory changes, ophthalmic changes, speech difficulties, muscular control difficulties, behavioral and personality being affected, aphasia, etc...
Photophobia is common due to increasing weakness of the muscles that control eye function , such as accomodating to changes in light levels, focusing, tracking , ability to open and close the eyes, etc.... I think that this is right up there at the top of the list of worst symptoms of PSP as it impacts the many activities of daily living , including balance !
Finding an ophthalmologist who specializes in neurological illnesses can be helpful.
Researching PSP can help identify and explain many of the challenges that come with this illness.
Sending you and your Dad lots of love as you go along ! There's lots of help, inspiration, and support to be found here.
Elise in New York, USA
Hi LovePaul!
Sorry to hear about your Dad´s illness.
I agree with "carehope" to about intellect and photophobia aspects regarding PSP disease.
First: If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS (Richarson-Steele-Olszewski), PSP-CBD, PSP-P, MSA, etc.), then 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. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.
My wife was diagnosed with PSP-RS in 2015. Before to be diagnosed the first symptoms showed up in March 2012 as: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) from March 2010. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did NOT confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.
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.
Hoping to have been helpful.
Hug and luck.
Luis
My wife diagnosed with PSP remained cognitively intact until the end. It was the inability to speak, eat, drink , move her eyes, and creeping paralysis, loss of balance that was progressively affected. We did ensure she remained as physically active as she could under the guidance of physiotherapists. Initially, she swam, walked, lifted weights and did strength training. She remained remarkable strong until she died. Her heart gave out in the end as she could no longer eat or drink water.My advice is to keep your father as active as you can under the guidance of physiotherapists and knowledgeable trainers to give him.some quality of life. PSP is cruel.
Hope this helps.
Hello to you L-P, this is an unwanted journey for yuo and all of us! I am 82 male, diag 6+yrs ago, and still active and able, tho mobility becoming much more wobbly etc.
Seems there are 10 variants of PSP, all different. I am prob on Parkinson variant which deteriorates the most slowly. Richardson-Steelse variant is over half the cases, and seems much quicker moving.
I have a 7page document, a record of my learning, experiences and some advice. Can send you if you tell me ur e-address. All best TimbowPSP
Parkinson's to PSP
Goodbye
