PSP disorder

Hi I am new to this forum I am a 70 year old husband looking after my wife of 63 years she been diagnosed PSP on 2015.l have been reading a lot of forums about supplements to help her in this terrible disease,we have been taking coconut oil in coffee and tea ,it has given me more energy and my wife has been taking it also,she been taking lysine ,coq10,acetyl l carnitine ,it is hard to know if these are working in the last year her balance is worse ,but the eye's and swallowing are the same,her eye's can only move left and right,the swallowing is.an occasional cough,the coconut oil seems to help,we live in Napier NZ and get plenty of support,falling backwards is a real danger of injury,but you soon learn the correct way of sitting on dinning chair and turning sideways to get up.at night I get up 3 or 4 times to help with the walker she pushes,turning around you have to be careful as she had fallen over sideways.she gets eye drops to help with dryer.you know it's hard to watch your wife change and suffering from this disease ,and there has been many tears between us., with love and dedication you carry on

7 Replies

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  • Hi Birdman. Welcome to this site! You have found a great forum to help you along the journey.

    I live in Hamilton! My story and that of my husband is over, but you can read my posts. He had CBD, not PSP, but I can guarantee there is all the help and support you need and more here!

    May have to trailblaze the help line through medical channels, tho. I found it very challenging! Have you found a good specialist? We found a knowledgeable 1 at Waikato for CBD, but too late for us to pick his brains! He did prescribe coconut oil, tho!

    Do your research and try and keep ahead of the PSP 'ball'!

    Hugs to you and your wife.

    Jen xxx

  • Thanks for your reply, out of desperation i am seeking more information from the forum, the parkinson association is not really helpful as they concentrate on parkinson disease

  • You have definitely found the most helpful place! Majority here are well acquainted with PSP at all stages. Search on the site for symptom you need answers for and a comment/thread is bound to come up. Try also CurePSP website.

    You will get no help on how to deal with NZ health system as I don't think any has been documented! But when time comes to try and get assistance, Kevin_1's comments are universal! Tell them the whole picture, blow by blow, and don't under exaggerate!

    Look to future needs and try and get wet bathroom, stairlift, wheelchair friendly environment at home somewhat in advance of when needed. Use respite care, at home and in a home, whether Hospice or palliative care are available, and at what stage. What nursing assistance is available, etc. Discuss it all together while you are able, and before the opportunity is lost.

    What annoyed me most was the time it took for things to be finished after first putting pen to paper! Find out if you can what you can claim for assistance (if any) so that you have a plan of action. Decide early on whether your wife feels able to deal with a PEG, DNR decision, Power of Attorney, etc. They may all be required and take time and money to arrange. Not always when anticipated!

    We had issues with POA as tho one was in place, the law is most complex and frustrating here! Our GP could not sign it and hospital specialist would not as he maintained my love was able to make sensible decisions - at breakfast time. By lunch he was often too sleepy, not in his right mind, or unconscious, then back to "normal" next day!

    Find a specialist in NZ if there is one, there is one at Waikato who seems to deal with Frontal Temporal Lobe dementia so maybe he is interested in All lesser known brain diseases. Will see what I can find out and get back to you if that is helpful.

    Get your family to understand how they can help. It can be a very long hard road, but others have accomplished it with love, grace, anger, and extreme courage! You will too!

    Hugs to you both

    Jen xxx

  • Thanks Jen for your lovely comments,i have just finished renovating the bathroom, as i removed the bath and created a wet floor for kathy my wife,we also have power of attorney in place ,also the bank accounts have been changed .thanks again Peter xx

  • birdman32465

    My heart goes out to you! I am a 74 yr old woman caring for my husband with PSP. It seems to treat everyone differently as you will realize when reading posts on this site but there are many common threads also and you can get info on whatever you are experiencing at the moment.You mentioned that your wife falls sideways with the walker while turning.My husband has quit using the walker entirely when in the house,because we felt it was causing more falls than it was preventing!(I do walk with him anytime he moves around the house.This is the only way we have found to prevent the frequent falls he was having.It certainly limits my freedom but I have resigned myself to the fact that it is necessary.

  • Hi Birdman, sorry to hear your wife has PSP. My dad also has PSP and is now in hospital care here in Christchurch. Mum found this Ustep walker which is much easier to turn & is weighted at the bottom. We have found the Christchurch Parkinsons Trust very helpful & Dad goes to gym group each week. Here is the link for the walker ustep.co.nz/The_U_Step_2_Wa...

    This is a tough journey & reaching out to others for support is vital. Please feel free to message me directly if I can be of any further help.

  • Hi Mander thanks for the reply, the walker we use has books inside to weigh it down, we have been to parkinson exercise class which is very helpful kathy has been diagnosed with psp about 2 years. from the start we use to ride bikes and when she stopped she would fall over and after a serious fall which broke her colar bone she stopped riding. for me it has been tough, i had a heart attack in 2014 and i am diabetic type 2 ,you know with positive thinking and love and dedication you carry on ,

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