Challenges in life

[Autumnstone]

Hi, I am a new member to this site. My husband was originally diagnosed with Mild Cognitive Impairment last year. As time went by I thought something else could be going on. In February of this year we saw a Neurologst & PSP was eventually diagnosed. I feel now I need to interact with like minded people who have husbands/wives, partners with this condition. Life just lately is tough & quite a challenge for both of us.

[honjen43]

Welcome Autumnstone!

You have found a new group of friends who will help you through this and give all the support you will need - and more!

Hugs

Jen xxx

[Autumnstone in reply to honjen43]

Thank you very much for your welcome x

[Hidden]

Welcome to this group of understanding & supportive new friends. This is a safe place to ask questions or vent if you need to. There is a lot of good information in past post which l found to be useful. Sending hugs... Granni B

[Autumnstone in reply to Hidden]

That's very good to hear. Thank you!

[Hidden]

Welcome. Ask anything.

Five years ago on May 5th I found a neurologist who knew what was going on. She laid out what the prognosis was for Larry and I. I did a three second count to adjust my brain to what was coming. Knowing it was going to be my job until it was over.

It would be good to know what country you are in to see what kind of help is available to you.

[Autumnstone in reply to Hidden]

Hi, I am in the UK, Kent South East London area. I was about to attend a local PSP meeting before Lockdown, sadly that was cancelled. I look forward to chatting to you all for any tips etc that might be of help! X

[Hidden in reply to Autumnstone]

I think you will find this site better for information. PSP/CBD can go any number of directions. Some people, experience everything that could possibly happen and others don’t.

This is an old post by Kevin_1 that will be useful.

healthunlocked.com/psp/post....

[Autumnstone in reply to Hidden]

Thank you!

[doglington]

Welcome. I also live in the same area. My husband died 2 years ago, 4 years after diagnosis. I remember how shocked we felt at realising the possible path ahead. This site was a lifeline for me. Feel free to ask for help or relieve your feelings. A welcome hug from Jean x

[Autumnstone in reply to doglington]

Thank you Jean. To be perfectly honest with you I do feel totally alone with coping with my husbands condition. I have very good support from my friends & neighbours but my husbands eldest son ( we dont have children together) is no help whatsoever. I know in Lockdown things have changed but he wasnt any help or didnt offer any support way before then!! He has a sister but she is a woman of little words & basically doesn't give me much words of encouragement...I could go on & on!!! I consider myself a strong lady but I am only human at the end of the day, so that's why I have turned to a site like this to talk to people who understand. I am sorry to hear that your husband passed away, my heart goes out to you❤

[Hiking13]

Welcome to the site that nobody wants to join but you will soon see what an amazing group of people are on here. There is always someone who can offer the right advice, humour, hugs etc

[Autumnstone in reply to Hiking13]

Thank you. Yes your right, the site that nobody wants to join, but I'm glad I have☺️

[JCRy]

Hi Autumnstone! Greetings from an ex-Kenter, though I lived in West Sussex for many years. Now my husband and I are expats in Almeria, Spain, where he was diagnosed with Parkinson's and then PSP some years ago. This site has been such a support to us...actually, it isn't the site, it's the beautiful people on it!

I highly recommend going to the meeting whenever, if ever, it is reconvened. I went to one a couple of years ago when I was in the UK and am still feasting on the joy of meeting such great folk.

If you have practical questions to ask, ask away. The experience here is phenomenal. If you have need for a shoulder to cry on or an ear to chew off, know that we have all done it and we understand. Being honest is one of the hallmarks of supporting one another effectively. You will find both humour, solace and hope here, and make friendships that will last through the most tempestuous storms.

Keep posting!

Much love

Juliet

[AliBee1 in reply to JCRy]

Hi Juliet,

Lovely to hear from you. I hope that you are managing ok. Take care and keep safe. Big hug AliBee xx

[Autumnstone in reply to JCRy]

Thank you Juliet for your warm welcome. I will probably dip in & out of the forum until such times that I feel the need to ask for advice or want to get something off my chest!!! Its fairly early days at the moment & I am just getting my head around things. I am sure we will talk again.

[Megabrew88]

Welcome to the group!

So sorry that you have cause to join.

We are in the same area, my husband died in February, 6 years after diagnosis.

You will find great help and support from this group, as I had, so don’t hesitate to ask for help. I can totally relate to your feeling of being alone, as I went through the challenges with my husband on my own with no support from his family.

Just remember you are not alone, you have this PSP family.

Love and light,

Mxx

[Autumnstone in reply to Megabrew88]

Thank you for your kind words. I am sure that the PSP family is one that I can rely on❤

[AnneandChris]

Hello there

Welcome, but at the same time so sorry you have the need to join us here.

However, you will find a wealth of experience and help from those who are also on this journey, or for whom the journey is now over but who still want to help and share their experience.

You haven't mentioned where in the world you are. This would help as for example facilities available here in the UK are markedly different in the USA.

We will be here for you, so keep on keeping on.

Anne

[Autumnstone in reply to AnneandChris]

Thank you Anne. I am in UK, living in Kent South East London. I belonged to another group when we thought my husband had MCI & a lot of Ameican people were members. I will definitely keep on keeping on, as to be honest I haven't got a lot of choice☺️

[AnneandChris in reply to Autumnstone]

I hope you'll get lots of support from both your consultant's team, Parkinson nurse, SLT and also your local physio, OT, GP and District Nurses. We were so fortunate with our local team who were only a phone call away whenever we needed them.

It can be a roller coaster with life being somewhat unpredictable. When we got Chris's diagnosis, we said it wasn't going to beat us, sadly Chris lost his battle after 4.5 years but he faught bravely to the end, hence my motto of keep on keeping on.

Hugs

Anne

[HilsandR]

Hi Autumnstone,

The diagnosis comes as a huge shock, doesn’t it, and the carers journey can indeed be a lonely one.

I do hope that your husband is under the care of a Parkinson’s nurse (PSP comes under their umbrella) but I realize not all hospitals can offer that service for PSP sufferers. We were lucky to have a couple of amazing nurses, one when Rod was diagnosed at St George’s in Tooting and then I asked to be moved to a hospital nearer to us in Kingston-upon-Thames where a Parkinson’s nurse had just joined to look after PSP patients as well. She was able to set the wheels in motion from the outset with OT, physio etc.

At the end of the day we do the lions share of the caring and it takes its toll both emotionally and physically. This site offers practical advice, emotional support, a bit of the lighter stuff, which is most important, and most of all a bit of humour, which is a must. Take one day at a time, there really is no point in trying to work out the what if’s that may be further down the line; if there’s one thing I’ve learned about these diseases it’s that there’s no such thing as one size fits all. My husband was certainly not text book PSP, even though his diagnosis was ‘probable’ PSP in that imaging showed the hummingbird sign, making that the most likely diagnosis.

Try if you can to keep making memories (hard I know with lockdown). I know that sounds crazy given the circumstances, but those memories will sustain you further down the line and although it’s not always apparent to us as our loved one’s illness progresses, they are still capable of feeling joy and it’s important to make them feel included, especially in conversations even when they’ve lost the ability to participate.

My husbands battle ended 18 months ago so another rocky road to negotiate. To this day I have no idea how I got through the daily challenges (a good cry in the shed followed by a glass of wine was helpful) but somehow we do muddle through it.

Keep dipping in an out of the forum, we don’t have all the answers but you will often pick up something that relates to your own journey from another’s story, which can be really helpful.

Very best wishes to you and your husband,

Hils

[Autumnstone in reply to HilsandR]

Thank you Hils. My husband had one session with the Neurophysio dept then we went onto Lockdown. He has been doing his exercises at home which they gave him. Before Lockdown he was also going to the gym 3 times a week too. It's his balance that is giving us cause for concern. Having had so many falls last year I knew something else must be going on with him. Since lockdown we have both been involved with the garden which I am pleased about as my husband lost all interest with it in the early days, now his love has returned for it. Although I do have to keep an eye open for him incase he takes a tumble!! Thank you for your good wishes I am sure we will chat again soon, until then stay safe Pat

[AJK2001]

Welcome to this site, which I have found a life saver. When I first looked at it I must admit I found it very difficult and didn't come back for some time, but then the time was right and the people on it have supported me, given me tips and made me laugh and smile and at times cry.

There is no question too daft to ask, no little thing to minor to query.

I looked after my Mum who died in December last year. She lived semi independently until the end. It involved alot of compromise on both our parts but we made it work and though there were times of frustration & fears, we were also able to have a lot of laughs & smiles.

I can imagine at this time of lockdown you must feel very isolated and uncertain about the future, but maybe also able to find joy in the smaller things of life? I hope so.

Welcome aboard. xxx

[daddyt]

Hi Autumnstone - As a few others have said "welcome to the group you don't want to belong too, but sure glad it's here." PSP is PSP, but it will affect everyone a little differently. You are in the comfort of many caregivers - past and present with real life experience with this disease. And, because you are new to this awful reality, you may want to check out the PSPA and CurePSP for relevant information on the subject.

Tim x

[AliBee1]

Hi. I am so glad that you have found this site. It will be such a godsend to you even in the middle of the night. It is international and there is frequently someone somewhere else in the world who can respond to your rant or question. I know I had an answer one night from Canada that just kept me from meltdown. I am also sorry that you have had to find this site but you will find that the people on it will become your support and family and that there will alwys be someone who has tried this or done that. With regard to your step children, even if they do not want to be involved keep them up to date with how things are so that they do not accuse you of not telling them how their Dad actually is. I did not have this problem but I have a friend who did and it caused so much problem when he had to go into a home. Also make sure that you get your Power of Attorneys done and if you can talk about what your husband wants at a later stage. I know that sounds horribly practical but it is necessary. In the meantime just make the most of all the good days that you can share and take photos etc because they will become very precious. You have already had some brilliant replies so I will not say anymore but am sending you a big hug. AliBee xx

[Ettavb]

Welcome and you’ve found what I consider the best resource/support source you will find - and you’ve found it rather early in your journey- which I think you will find to be to your benefit. My mother (CBD) had the condition for years before I found this site - and oh how much grief and panic and confusion I could have avoided if I’d found this place from the get go.

[ncgardener799]

Hi Autumnstone, , This site as well as one called Smart Patient are my life line. I am in US and there are differences in medical support with each country-but on this site we are all in the same boat. Lots of information on previous posts and questions are always welcome. Not everyone experiences PSP the same, as others have already mentioned. It took us 4 years to get a diagnosis for my husband. We are now in year 5 and slowly progressing. He is still able to walk without assistance , but balance is a little worse lately. He has extreme fatigue, speech changes and some cognitive changes. We see a movement disorder Neurologist, which seems to be better fit than regular neurologist. He wants to be up and moving, but fatigue gets the best of him. He does take a stimulant prescription medication that gives him a little jump start when he wants to putter in garage or go outdoors for awhile. You will find caring support here and lots of recommendations to help you cope and accommodate your husbands needs as well as your own. NCPat-

[LuisRodicioRodicio]

Hi Autumnstone!

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 8 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.

The information I am sending you through the private mail of this chat are suggestions that I submit for your consideration in case they are useful.

Hug and luck.

Luis

[Baytalon]

Welcome, Autumnstone. Although I don't post here often, I do visit this board every day and find it a source of information, inspiration and comfort. This disease is a nightmare, but you are not alone. Alone we are weak, vulnerable, but together we are strong and capable.

[Birdman34265]

Joining this website will be the best thing you can do, we have experience PSP with husbands and wives ,the journey you face ahead will be challenging and heart breaking sometimes, you must stay strong and Gain as much information as possible ,stay close to family and friends to give you inner strength.

Peter

[Autumnstone]

Thank you Peter I will try 🙂