To the person asking about wheelchairs., Our daughter who has PSP is 52. We got her a "Rock N Go" its great. works fine for her. Linda

[dengraphix]

Talking about PSP is hard. Our daughter was misdiagnosed with PD for 13 years. The meds

were awful on her body. Finally after 4 neurologist said she had PD we found a new one who

told us she had PSP instead. It makes sense now, but when 4 doctors are saying the same thing then you believe them.

Now she is only on Baclofen a muscle relaxer. Different person. She doesn't move or talk, but boy can she smile!!!!!!She understands everything that people say around her. She still eats regular food and drinks lots of liquid. She wears a soft neckbrace when not eating or sleeping because her head tilts to the left and down otherwise. Its getting alot better. She has Botox in her arms to help with loosening her hand muscles. It is slowly helping. My husband and I work with her hands every day. She stands with help to get her into bed.

I hate that she went through hell with the PD meds for all those years.

Just a note we learned from our Neurologist...Parkinson and Parkinsonizm are not the same.

PD meds don NOT work on Parkinsonizm ?

Thanks for listening, I know we are going to have a long road to go, but as long as she is

healthy otherwise and has the gorgeous smile we can cope.

Linda and Garry B.

[GoGreen]

I am so sorry your daughter is having to go through this as well as you. This is a very helpful site to ask questions or just blow off steam when frustrated. We've been there and understand! Take courage and enjoy her smiles!!

[Wigwambob]

Thank you for the wheelchair response but we are being provided ,by the NHS, achair adapted to my husband size and future needs for me to push as his coordination is non existent but we have to purchase the motor, to power it, ourselves. The choice on line varies in price enormously so I wonder if anyone here can steer me in the right direction. Thank you in anticipation. All the best to you all.