Advice Wanted from Occupational Therapist - for 79 year old with PSP since 2018, re planning ahead for likely household needs. Thanks!

[timbowPSP]

Advice wanted from OT? for forward planning in life, as in household needs and changes. I am 79, with PSP diagnosed 30 months ago, and so far coming on "pretty well"! I have also written 3 pages of creative advice for sufferers of this condition, and happy to share that. Keywords: 'Please Stay Positive'. Timbow

[Epsilon12]

How does one access your three pages?

[timbowPSP in reply to Epsilon12]

Can spatter them all over PSP pages, or pls send ur email address to [e-mail]. xTimbow

[AJK2001]

Love your positivity but also that you are aware that changes need to be made. Your local council social services may be abe to help. One major project would be getting a wet room put in, preferably wheelchair friendly. This made life so much easier. Keep smiling, lovely photo.

[Debspottery1]

Adaptive devices such as fat handle spoons and forks, deeper dishes made of soft plastic to serve soft foods and meds, drinking tumblers with straws of different sizes, lift chair, wheelchair accessible shower, Kiziks slip on shoes, mattress covers, spare sheets, bed rails or hospital bed, extra gel foam mattress pad, keep a well stocked first aid kit with plenty of large bandages, Tens machine for leg cramps, pain plan for repeated falls such as Lidocaine pads, Tylenol, different size ice packs, a good chiropractor who understands what PSP is. remove all clutter, rugs, sharp corners- document falls and map out trouble areas to plan ways to adapt. Change to easier ways to dress- pull on pants, no button shirts, looser socks.

Meds all in one basket, keep organized records for nurses, doctors so easy to grab in emergencies. Have POA set up asap. Have advocates who know how to educate care givers and hospital staff , and can check in.

Educate yourselves on PSP - as it becomes much harder in later stages for every family member- best not to be surprised as changes come. Have a plan. Small kids may need help in understanding the changes, explaining things to them will help them be less fearful, and they can be such a blessing when they visit, as they bring life and energy.

Some churches provide free adaptive equipment such as walkers, tub chairs, wheelchairs, as well as groups to educate and share ideas on PD and PSP.

Learn about proper assisting and lifting techniques. Be familiar with aspiration.

Try to find a blessing in each day. God Bless everybody here on this site reading each other's experiences. It has helped me prepare and plan to deal with my husband's PSP.

It takes faith, strength and patience daily.

Our hospice care workers say try to stay out of hospital and care homes as staff are overwhelmed after this past year of Covid. When my husband is unable to walk, which is coming soon, we will adapt to new ways to cope, it's about adapting constantly.

I'm working on a family photo book for remembering happy things, and some cue cards for when speech is garbled and he is unable to write.

hugs to all of you brave people. Keep the faith.

[timbowPSP in reply to Debspottery1]

Thanks for all those suggestions Debs(pottery?) - spot on! I hope not to be needing all that lot just yet. But upstairs in first floor flat in funky old building is first situation to consider - with partner, who is my 'carer' .... then wet room and all the rest, with less energy to deal with these things. Brain working good, but body now not so well. That's all for now: it's 7.30am. Where are you based? Be good to keep contact. Cheers and keep on with PSP = Please Stay Positive! Timbow x

[Debspottery1 in reply to timbowPSP]

We are in Northeast Pa., near Philadelphia area, but in the suburbs/country. The closest PSP person near us is about 70 miles, so I appreciate being able to " listen" to you all from all over the world. I hear about the body not being so capable as before- strength gives out over time for both the PSP people and the caregivers. It's a steady demand on us, but at the same time, all else has been removed, our jobs, many friends and interests, obligations. So life becomes something else. The way I figure it, we have to develop a new perspective, or we will despair. It is similar to the Bible story of Job, I think. People don't really understand PSP life, and to be angry about it, or try to explain it to others is useless. Fortunately, it has so far , affected my husbands brain in a way that makes him laugh about the absurdities of it. Kind of a blessing. I also believe he has angels who keep him from really hurting himself badly when he falls.

[Richard33 in reply to Debspottery1]

That is such an impressive summary. I am taking notes....Richard x