Hi all. I'm so relieved to find this place, because at the minute I'm trying to help our family through a new diagnosis of PSP. After 18 months of testing her for everything under the sun, the doctor has finally concluded that mum has PSP/Parkinson Plus. In some ways it's a relief, in others it's every other emotion you might think of.
She's 72 years old and lives at home with my 76-year-old dad. He's fit and well, but not the most patient person on earth. She is still walking at the moment, although falls have started to happen more often - currently she has a cast on each wrist after falling two weeks apart. Speaking is tricky for her, but eating is currently not an issue.
I guess I'm here looking for any advice people might have, or recommendations for where we start. I'm trying to get together information so that we have an idea of what to expect and what comes next, but it's a bit of a scary new world right now. Thanks in advance for any words of wisdom you have to offer.
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theysingular
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Hi theysingular, (interesting monika!) Welcome! We all understand the turmoil you are in right now! We have all been there, whether patient or carer; and whatever the Parkinsons Plus brain disease that has been diagnosed.
It will help if you give us rough details of what country and area your mother lives in, as there are contributions from all around the world, particularly UK, Canada and USA, which give a lot of info on how/where to get funding, and other related particulars.
All of us have different stories of the path we are travelling, or have travelled. I live in New Zealand. My husband was diagnosed with CBD (cortico-basal degeneration) which is also Parkinsons+ with similar symptoms different timeframe. He died in June 2016. No single pathway is the same! We all learn what to anticipate and learn from the stories of others, but live in the moment until things change to a "new normal" - until another phase takes over! And the support and care from this website is amazing!!!
It isn't easy but you will find the strength, and when you are down or mad or frustrated, we are hear to listen and respond. Sometimes we have some levity - and that always helps!
There are also area groups in UK and some have met together on a number of occasions.
General advice for you all is to put a power of attorney in place, and at some bring the conversation around to end of life decisions before conversation has become difficult. Meantime get your mum and dad to make a bucket list of things they want to do together and send them off to make some memories and take photos. In the early stages it is not always the end of the world!
If your dad understands how PSP will affect your mum you may find him better able to cope. There will be much frustration along the way - I know only too well, and was not calm and collected! - but accepting that your mum is still the same person does help. She will just find things more difficult to handle, moving, thinking, thought progression, emotion, frustration. And he will need to learn to be patient, calm and empathetic - not always easy! When he feels unable to handle the more personal care, there is help available, sometimes costly, sometimes available with funding.
Welcome to the community, Theysingular - though we always say "sorry you had to be here."
One of the "good" things to start doing now is to figure out mum's bucket list and start helping her do as many things on our as possible! If you want some inspiring example on this site, try to read Bazooka's posts of her activities with her mom There will never be a better time and doing positive things will help balance fear and depression.
Another thing is to start the discussion on her wishes for medical care, end of life, etc; DNR? PEG feeding? What are her thoughts? This isn't just a one-shot conversation usually. If it goes well and slowly, it's possible she could die of something else (natural) before PSP runs its course. Not all journeys are the same. So help her stay optimistic.
Others will respond with more, but you will find a sympathetic and knowledgeable community here, and much welcome. XX
Welcome to the site. You have been given very sound advice already so there is no need for me to reiterate it. Now that you have the Dx do anything your mom wants to do sooner then later. If she can do so I'd recommend exercising regularly, safely. This seems to be the most common method for keeping the body moving as long as possible. Feel free to ask any questions or rant if it's been a bad day, we've all been there.
Welcome aboard our rocky boat, I have read all the messages and love the way people can articulate their thoughts and feelings, it is a huge support, I have been here over 11 years my husband has CBD, I would recommend you contact the occupational therapist as soon as , to get an assessment in place, it always takes time to arrange, but they are very helpful and will help with all mobility issues, and can assess your dads concerns too, we moved from a house to a bungalow 5 years ago, and
They helped with plans for a ramp and wet room, which we got a grant towards from our council, you should also look at a care package by getting social services to assess, we get funding for our carers, and contribute towards that fund, this will include respite for your dad. Your mum should get attendance allowance, which is not means tested, and either you or your father can apply for carers allowance, this is of course assuming you live in the uk, I hope this helps a little, but you can phone the helpline anytime and they are excellent at explaining what you can expect, and they will send you an information pack
Keep in touch with us, it is a lifeline at times of stress
I was reading your first post in 2016 Janet. You and your hubby have had a long haul! Long for CBD... Aren't these diseases odd? ... Everyone's journey slightly different...
Anne, sorry I have just got around to replying to you, it seems that some cases progress rapidly and others are a slow slow decline, we are the latter, looking back I can see the different plateaus, but we are often too close to notice, my sister and her husband came down to see us in September and he hadn’t seen Ian for over a year and he was crying, which was hard to take, as it hits you then that things are declining, Ian is constantly getting infections, and is currently bed bound due to a massive pressure sore he got during a long stretch in hospital, we have a granulating machine attached to the area that is helping to regenerate the skin, but it’s all extra stress we don’t need, all I can say is that although cold, the weather is lovely so Ian can look out and see the progress we are making in the garden
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself 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.
By private mail I´ll send you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan. The information I´m sending you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats and support to face this unknown disease.
Hug and luck.
Luis
Welcome. I will add physical and speech therapy to prolong your mom’s independence. The therapists can give her work arounds for situations if she’s inclined to listen to advise. An occupational therapist in home visit would be good to evaluate dangerous situations and make recommendations on how to set up the space for her to get around. A lift chair in the main sitting area and stair lift would be good if she lives in a two or more story home.
Welcome, although as has been said this is not a site anyone would be on by choice. You have lalready received a lot of useful advice which I endorse. We live in the UK and one of the most useful things that I read was the PSPA leaflet for Ocupational Therapists that is available on line to download or which you can send for from the association. It is very straightforward and easy to read and was my little bible to give out to any of the therapists/doctors that we came into contact with until they made a CBD one last December. In the meantime you will get so much help from joining this community and they will become like a family to you even if they are not in the same country as you - you never have to think that you are isolated and someone else always understands where you are coming from and many hands on ideas are shared. All the best and big hug. AliBee
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There will never be a better time and doing positive things will help balance fear and depression.
Feeling helpless😢
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