PIP question 13

I’m in the thick of teasing out which aspects of my partner’s condition are germane to question 13. I assume Parkinson’s Disease is viewed as primarily a physical disability BUT it does affect his ability to plan and follow any journey because he requires considerable support when he leaves home to keep him safe due to the nature of his motor problems. This is not exhaustive but the key limitations are:

* His motor conditions are aggravated by busy traffic (festination can cause him to move faster and faster until he is stopped or he falls), so I always go out with him to prevent him careening into the road. (Inability to safely cross a road).

* Using public transport is impossible because in the past he has experienced freezing when trying to get on or off a train or bus. Doorways are one of the main freezing triggers. Taxis are the most viable option because they diminish the incidence of freezing AND the driver navigates. In actuality I do all the active navigation and I drive him everywhere.

Both festination and freezing also apply to question 14, but I am trying to convey how these issues impact his mental condition such that he needs supervision. This is not a preference but a need. Festination and freezing can be profoundly distressing especially if they happen in a dangerous situation.

*He experiences hallucinations. The hallucinations make him feel paranoid and extremely distressed and in the past have caused us to abort a journey and return home. The incidence of hallucinations diminish if I am with him. Do hallucinations constitute a cognitive impairment?

I’m thinking aloud here and would appreciate any nudge in the right direction because due to these different issues he cannot go out alone and needs my constant supervision to follow any journey safely.

Thanks so much Gordon.

I think I’m going to lean into question 14 with his motor problems. While he does have significant issues with journeys (getting lost, confusion etc) aside from the hallucinations, I feel it’ll be a struggle for these to qualify as OPD. We’re seeing a Parkinson’s nurse tomorrow who may offer some more (medical) insight though.

magdelena

Gordon,

What do you think of this advice from the parkinsons.org.uk PIP guide:

Question 13. Going out
(Activity 11 in Appendix 2: Planning and following journeys)
Some people with Parkinson’s will get extremely anxious or distressed when going out and need someone to accompany them – especially on an unfamiliar journey. They may also avoid going out because of the fear of freezing (where they suddenly cannot move) or falling. Some people may have visual problems due to Parkinson’s and feel unsafe getting out and about without help.

Example response:
“I can’t follow the route of an unfamiliar journey without my carer. I easily get confused, and being in unfamiliar situations or places can cause stress, which makes my symptoms worse. I also freeze and fall often, so I am afraid to go out by myself.”

*smiles*

Yes, I thought it infuriatingly confusing.

Gordon, is it possible to ask you something in confidence?

magdelena