spending lote of money

[angy24]

Hello everybody. My father, who has a PSP, still maintains some independence. He undergoes physiotherapy twice a week and is taking levodopa. Lately he has been spending a lot of money, every day. Someone with similar experience? How to deal with this situation?

[easterncedar]

Tough one. Can you talk with him about it? PSP is associated for some people with poor impulse control, and family may need to intervene.

[angy24 in reply to easterncedar]

Thank you all for your advice and for your support and affection.

[easterncedar in reply to angy24]

It’s such a difficult place you are in. Sorry not to be of more practical use.

[PineEater]

Unfortunately, Physiotherapy in PSP doesn't help. It only has psychological effects on the patients and their caregivers. Spending lot of money every day could be a side effect of levodopa. How much levodopa are you giving to him, by the way? If it is of no help in reducing stiffness etc, and is also causing other side effects, second thoughts can be given regarding its continuance. Further, Caregivers need to keep themselves motivated, come what may. In short, Dedicated caregivers are themselves the best medicines for the patients with PSP which is unfortunately bound to progress rapidly.

[Bergenser in reply to PineEater]

I will disagree about the physiotherapy. There are many indications it helps in some cases to relieve symptoms and slow down the progression.

I've read an article with regards to rehabilitation for PSP-Frontal (this is the variant that tends to have many behavioural symptoms) - I'll look up the link.

My husband has used neuro -physio and this has helped maintain his mobility and balance - and motivation. So I would not generalise that it is "wasted". 🌻

[Bergenser in reply to Bergenser]

Here is the summary of the article regarding rehabilitation therapies for PSP-Frontal (case study)

pubmed.ncbi.nlm.nih.gov/376...

Apologies I haven't got a free link to the full article.

[angy24 in reply to PineEater]

Thank you all for your advice and for your support and affection.

[Bergenser]

Dear angry24. This is not unusual, PSP can cause impulsivity and obsessive/compulsive behaviours and the levodopa can increase this tendency. Please watch out if he is taking the levodopa more often or in larger doses than prescribed; it can be like a craving for the "dopamine hit".

My husband has had periods where he'd buy anything from the shopping channels or from the ads on his phone. At first he would deny it being a problem "they just sent me that stuff, I never ordered it", or "but it's a gift for you".

He also bought Amazon gift cards for a friend - who turned out to be an online scammer, but my husband was determined to help his friend.

Then, for a time we could talk about it and I'd ask that he limit buying to one thing once a week etc and he did control the behaviour for a while.

I've returned goods e.g. from Temu as he had bought multiples of everything, and I've checked his phone to cancel bookings for holidays that we are not going to take (he'd booked 3 or 4 places to stay on the same dates, luckily in the future so he hadn't been charged yet).

Now he no longer accesses online banking; I've removed shopping apps and payment cards on his devices, he has a small amount of cash in his wallet so he can still pay for a coffee or a card when someone takes him out. He also gets to support a number of charities and I think that helps for the "craving".

If you convince him to stop one set of behaviors there is likely to be a different one turning up so look out for "innocent" gambling games etc.

If there isn't a lasting power of attorney in place yet you will need to get the process started, and get his permission to protect him.

Thanks for caring about him; it's not an easy journey. Hope & hugs 🤗

[angy24 in reply to Bergenser]

Thank you all for your advice and for your support and affection.

[timbowPSP]

HELLO Angy, Yes it a bummer this PSP .... Please Stay Positive! I am male 82 and diag 6 yrs ago. There are about 10 'variants', alll developing slower or faster..... seems I am Parkinsons type and slower developing.

Levadopa is for Parkinsons and my neurologist said NOT for me, he reckons. Have u checked it out? I am still active and mobile, but getting less so. What age ir ur Dad?. Seems older you are, the slower it develops. I have a regime - my idea - of targeted exercises, diet - Meditaranean best, therapy, supplements, etc.

No-one has the answer, so keep checking around for anything that helps. Keep active, laughing, talking about it, sharing, and whatever.. I am just off to my Sat coffee get togeher, 100 yds up the hill, and dodging the showers! U and ur Dad, have a good w/end. TimbowPSP xx

[Tippyleaf]

Physiotherapy and all forms of exercise are helpful in maintaining core strength and stability. I believe it help sleep, constipation and mood too

My husband (PSP) was incredibly impulsive and became a big spender, he would order the same thing online multiple times, donate sums to charity, and buy online videos he never watched.

It is a huge challenge to manage. I became a third party on his bank account which meant I could monitor and had a clearer idea of where the biggest spending was and then manage that. We cancelled all bank cards but one debit cardagreed on spending caps and this limited online/ in store spending. I spent a lot of time returning goods, cancelling direct debits/standing orders etc Ultimately you may have to enact LPA if you have one. Sorry I don’t have a single fix but monitoring and understanding spending patterns helped me manage the situation and reduce at least some of the spending.

Best wishes Tippy

[Bertieandpiper]

Hi

I attended a PSPA event yesterday and impulsiveness with regards to spending money was highlighted during the neurologist’s presentation. Apparently banks are more aware of PSP and can give advice. I expect you may have POA so it may be worth discussing with them.

Best wishes x

[angy24 in reply to Bertieandpiper]

What do you mean by "POA"?Sorry, I don't speak English very well. I'm Portuguese

[Zerachiel in reply to angy24]

Hi, Power of attorney, this is where you apply to officially be able to make decisions on behalf of someone else if they no longer have the capacity.There are two, one is one for money/finance and the other is for health/medical.

[Bertieandpiper in reply to angy24]

Hi

It looks like Zerachiel has answered your question. I do hope that you manage to find a solution or the necessary support, however there is always help on this forum for most questions.

Best wishes

[Topcatwoof]

Hello, my hubby has psp and was getting physio in the early days after diagnosis but to be quite honest it wasn't doing much if any good so I stopped it. He was never put on on levodopa. As far spending money I wonder if its because its one of the things they can control. My hubby did that however my daughter and I now have Power of Attorney. She has her dad's bank details and watches what he's doing. Our Neurologist kept telling me to get it set up while my husband could still be aware and give permission. It's a safety net for you for later in the disease. It's given us peace of mind. Hope this helps a little. Be strong without being aggressive.

[Sharsuk]

My husband also does physiotherapy and takes levodopa. He orders lots of useless stuff online.He also purchases T-shirts frequently and posts selfies wearing them. Have made his account , a joint account so I get sms when he spends. I am not allowing him to use his credit card ( hidden it). So his spending is restricted to his pension amount.

[DadsBarmy]

can’t say I’ve had similar experience