Blue feet late stage

[Jodi999]

Hi, I'm new to this and I'm glad I found this site, it has so much information and really appreciate people sharing their experiences.

My mother in law was diagnosed with psp in June 2021 after a few years of slow walking and falls. She currently walks very very slowly with a walker from bedroom to kitchen but that's it for movement. Incontinent, struggling to speak and has lost a lot of weight. Recently her feet have gone blue, will be taking her to see the doctor but was wondering if anyone experienced this? Doctor is usually quite useless, only get things done when she's taken to hospital. I'm guessing her feet are blue because she doesn't walk much and either sits behind laptop or lies in bed.

Talking about her symptoms now it feels like she's in the later stages but it's hard to tell.

[AnneandChris]

Dear Jodi

I'm so sorry you have the need to be on this forum.

PSP is a difficult journey for everyone involved and I would urge you to get as much help as you can. You haven't mentioned if your Mother in Law has seen other health professionals such as OT, Physio and SLT or even a Neurologist or Parkinsons nurse. I know that PSP is difficult to diagnose as it is rare. Have you been on the PSPA web site here in the UK? They have a wealth of information which can be downloaded and can be given to your GP and will help you navigate your way through this.

Your MiL's blue feet are probably due to circulation problems and she needs to see a GP soon.

I do hope this helps and that you will get other help available.

Keep on keeping on

Anne

[Cianodude in reply to AnneandChris]

My mum has CBD and differs with the blue feet yoh need to elevate her legs day and night and massage them back to the natural colour my mums in a wheelchair and we do this every day. Her speech has been gone a year she’s totally immobile wears nappies.it’s a heartbreaking disease. Im her full time carer. Hope this helps

[Jodi999 in reply to Cianodude]

Thank you for the suggestion, will try this. It is heartbreaking, a very horrible disease

[Jodi999 in reply to AnneandChris]

Hi Anne,

Thank you for replying. She was diagnosed by a neurologist and did have occupational therapy. At this stage it doesn't help anymore and the only thing the neurologist suggested was a peg tube to prevent choking.

I've contacted GP and they will check her but I do think it's to do with circulation as Cianodude suggested. The GP is very reluctant to see people in person as a result of the pandemic, they just want to handle everything over the phone which is why it took really long for her to get diagnosed.

[LuisRodicioRodicio]

Hi Jodi999!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I have sent by the private mail of this chat our experiences with PSP on more than 8 years hoping could be useful to you.

Hug and luck.

Luis

[oilman1]

My wife started getting blue feet at end stage. I was told that it was due to a weakening heart which made it difficult to pump blood to the extremities. From my memory, she was within a few days of passing at this point. My prayers are with you.

[Jodi999 in reply to oilman1]

Thank you for your reply, I'm sorry for your loss. That explanation does make sense and is worrying although I don't feel like she's at the end stage just yet. Then again, you never know.

The doctor explained it is due to her not walking enough and sitting most times. She suggested putting a pillow under her feet when in bed and to lift feet when sitting. Hopefully it will improve.

[oilman1]

With this disease you are really never sure where you are at. I thought my wife had at least a few more months to live but then all of a sudden, she took a turn for the worst Within 3 days she had passed away. I am still not sure if she "willed" herself to death as she never wanted to be a burden to her caregivers. Wishing you the best on the journey.