I'm New here. introducton: I have been... - PSP Association

PSP Association
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I'm New here. introducton

Peasantfarmer
Peasantfarmer
23 Replies

I have been recently diagnosed with PSP, having formerly been diagnosed with PD then MSA. I am a retired Engineer and live on a smallholding until we move middle of November. I have been fairly actve until recently so am finding not being able to do as much very frustrating.

23 Replies
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SewBears

Welcome to the site but I’m sorry that you had to join. It’s nice that you found us!

I’m afraid that frustration goes along with PSP but the trick is how well you can deal with it. Try to focus on all of the things that you can still accomplish and try not to think about how things used to be. Being positive makes a difference but it is something to be practiced and learned. Stay busy. Depression is also part of this dreadful disease and it helps to be proactive by having a will drawn up and other legal papers such as a financial power of attorney and health care decisions for later down the road. Once these things are in order you will be able to concentrate and appreciate today. Live in the moment. Some of the frustrations you’re feeling now will one day be laughable moments. This is hard to fathom but it’s true.

This is scary times for you but you aren’t alone. Keep coming back. We’re here for you.

Sending hugs from I SewBears

Xoxo

6 likes
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tamaradecarlo

Thanks that help

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Tippyleaf

Dear Peasantfarmer

Great name!! Welcome - the site no one wants to join but will become a great go to place for you and your family.

SewBears has given you some great advice . I would add that as we age we also have to adjust PSP forces those adjustments along a little sooner but you can still achieve a good quality of life albeit different for some time yet

My husband was a retired surgeon and from never having time for hobbies found huge pleasure in art and music therapy among other things he had never had tine for.

Think of all the things you enjoy and try and find local groups you can join in with. Keep active - exercise in whatever form suits you - this is so very important for you in every way.

Finally we are spread around the world so use this site to ask questions but do mention where you live so that others can best support.

Hope your move goes smoothly no matter where or when a person moves house it is a stressor so do be kind to yourself

Love Tippy

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Jeff166

Welcome. Ask any question. Depending of what country you live in different help is available.

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doglington

Welcome. I hope you find this site as useful as I did. My husband has died now but I still keep in touch with these friends who really understand the journey.

All I would add to the excellent advice you have received is to do immediately anything you always intended to do. It will get worse and doing things you dreamed of is a way to keep moving, active and positive.

Love from Jean xxx

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Peasantfarmer

Thanks for the messages of welcome and the advice.

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Mottsie

PSP is a mysterious disease. Folks here are more than willing to share their first hand knowledge. I believe you have just discovered your new group of understanding friends. This is safe place to rant when needed and ask questions. As you read through some of the older post you will discover no subject is off limits. Sending hugs. . . Granni B

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Inparadise

My advice is to travel as much as you can, while you can, if that is important to you. My husband and I have been traveling every month since his DX two years ago. It gives him something to look forward to, and gives me a break as his caregiver.

This may sound odd, but I am grateful for this time that we have together...........

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Katiebow

I think the advice people have given to your question are very sound and sensible and don't think that I can add more. It's a difficult diagnosis to accept, my husband took over a year to do so but once you do accept it you feel able to listen to your body, talk about and plan your wishes and live life one day at a time. Now is the time to do the things you always wanted to or dreamed of, don't keep putting it off for another year. Hoping your move goes as smoothly as possible.

Love Kate xx

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AJK2001

Welcome aboard, I hope you find this site as useful as so many of us have. It is somewhere to asks questions, share information and where you can let off steam.

Whereabouts are you based? We are very much a global group, so useful to know, to help point you in the right direction at times.

xxx

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Peasantfarmer

I have lived in West Cumbria, UK for most of my adult life

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AJK2001

Ahhh a beautiful part of the country........

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Railfan

Greetings and welcome. There are a lot of caregivers on this site and they can provide great advice. There are also a few of us, like myself, on the same journey that pitch in our voices from time to time. If you feel like a rant, please do. No one here will judge. I'm in the US very near Orlando in Florida.

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Dadshelper

Welcome to the site. You have been given some great advice. Do you have any family that lives with you to help out with things? You'll want to start building a support network of family, friends and medical people as time goes on. I am not familiar with the UK's health system, other then what I have read on here, but you'll want to start with Assessments etc sooner then later as they can take time.

Ron

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LuisRodicioRodicio

Hi Peasantfarmer!

I'm sorry PSP 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.

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.

I am not a phisicyan. During the 7.5 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

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ncgardener799

Hi Luis, I post here occasionally and always find everyones information so useful. I noticed in your recent post that you have some information you can share through private mail. I am interested in receiving anything that gives insight and might help navigate this disease. How can I receive your document? Thanks

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LuisRodicioRodicio

Hi ncgardener799!

I am sending the information through the private mail of this chat.

You will find a notice when arrival on your email box.

Hugs and luck.

Luis

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Marilyn_cbd12

Welcome to this special place. We are happy that you found it. My husband is in his 13th year of CBD, which is similar to PSP. I would echo the advice to live in the moment and to travel now as you are able.

Marilyn

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journeyofjoy

Marilyn,

I hope you don't mind if I ask you a few questions about your husband. 13 years is quite a while for this disease. I assume your husband's symptoms started 13 years ago. What were the initial symptoms? How long did it take for a diagnosis?

I posed a question earlier today - wondering about the duration of these diseases. The neurologist has given us a much shorter time frame but some people go on much longer. I hope your hubby is still doing okay.

The doctor goes back and forth between PSP and CBS as far as a diagnosis.

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Marilyn_cbd12

Hello, Journey-- sorry I am delayed in responding but had house guests for several days. You are kind to ask about this unusual period of illness.

My husband's symptoms have been prominent since 2009, but early indications of balance problems, slight tremor in one hand, postural stiffness on one side of his body and cognitive issues (memory loss, difficulties with executive function) were there in 2006. 2009-2012 was a period of going to different doctors, trying to assess what was going on and CBD was introduced as a probable diagnosis in 2012 at both the Mayo Clinic in Rochester, Minnesota and the Emory University Hospital's Neurology Clinic in Atlanta, Georgia. Neurologists at both centers were in agreement that 2006 was when it began. My husband was in good health, trim and physically fit until the onset and that has probably helped him to live this long with it. He also, in the opinion of the neurologists, had a high level of cognitive reserve which allowed him to devise compensatory strategies for the mental decline and slow down the recognition of the real loss. The decline has accelerated this year, though, and that has been discouraging to watch and even worse, for him to acknowledge.

Marilyn

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Peasantfarmer

The thing which really worries me is cognitive decline and how I will cope with that. Any tps would be welcome.

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raincitygirl

HelloPeasant farmer;

One of the most inspiring things about this site is to see the number of things that people with PSP manage to do! Yes, most often with loved-ones' help, but still: Life isn't over - even if unfairly changed.

I send you best wishes and good luck, and hope the progress of the disease is slow enough to permit you many many more experiences. 😊❤️

Anne G.

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Baileyboo

Hi Peasantfarmer

I also welcome you to this forum. I am sorry you were put in the position to need this.

Please use this forum as the support and information is invaluable. I know I could never have coped without so many amazing friends on here.

I lost my wonderful husband almost 2 years ago.

As advised by others ensure you do things you are able to do and enjoy the time you are able to do so. That's a wierd sentence! I am sure you will know what I mean.

Love Pat

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