As my symptoms change/increase (I have PSP-cerebellar ataxia with dementia, or so I’ve been told by a neurologist and a neuro/psych specialist) I have started to check into this site more and more for information. It has helped me stay ahead of the “game” as no one in my family talks to me about this. Not sure what will happen when I require more care, but I’ve already stated that they are to send me to a nursing home or hospice when that need arises. I’m already being seen by Palliative Care (my neurologist recommended along with counseling and a psychiatrist to handle the meds). I guess it’s up to me to find a nursing home (as I feel my hubby won’t be comfortable with the level of care needed), a lawyer (they’ll tell me what I need to do legally) and a funeral home. It makes me a little sad that my hubby only occasionally makes me a meal (not allowed to cook anymore), drives me to appointments (not allowed to drive), occasionally reminds me to take my meds (I forget a lot) and occasionally cleans the house (something I have extreme difficulty doing). My kids are super busy with their own families. Sorry, I know I’m whining like a spoiled child, but I’m feeling pretty alone these days and not seeing a light anywhere in the tunnel. I love your funny or poetic posts, pictures and all the valuable information I’ve gained from this site. You all are a blessing to me!
💕Deborah
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GmaDeb
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We are a bit of a big crazy family here with every kind of personality, age, gender, health and social situation...What we share in common is living with (as patients or caregivers) PSP and CBD in all its forms...and a desire to thrive to the best of our ability despite the disease!
And speaking of forms, when I leave this page I'm going to have to look up cerebellar ataxia: holy cow - I thought I'd heard of all the variants of PSP but this one is new to me! How long have you been living with this? (and no need to answer any questions if you don't want to. Of course that doesn't mean some of us won't ask!
It has to be hard to be the centre of the family (as I'll bet you are) and when you need support to find that the others just can't pick up the slack. It may be "unreality" on their part: a sort of denial that the centre of their universe is slowing down or going off course. It's unthinkable, perhaps, and they just can't hold it in their minds. Do you think that's what it is?
Whatever the situation, you are NOT a whiny child! You have been injured, in a most grievous and heartbreaking way, and you deserve so very much more than you are getting. It's not their fault, they don't understand, truly. But we are here, Deborah, and we do understand.
Keep in touch...we have a few glimmers of light along the way as we chat here, and now you're with us.
Hi Deborah your post is very sad, but like says welcome to the family, they are all wonderful people on here, we will all be there for you, agree with Anne with what she says about family, some get it and some shy away from it, I think because they are frightened to except mum/dad is terminally ill. Sending you a big hug, feel like you need it, where are you living? Yvonne xxxx
Thank you Yvonne. It’s just been a tough couple of days dealing with pain and being alone at home (except for our dogs). I really appreciate the virtual hugs. I live in a little town called Gowrie, Iowa in the middle of the USA. Love it here!
Hi Anne. Thank you for the glimmers of light. I really needed it tonight. I’ve suffered a migraine headache for the past 3 days (neck/shoulder muscles won’t relax) and still have yet to take my night pills tonight. It’s 0300. D doesn’t like to set up my meds When my weekly tray is empty, so I just take them when I’m able to get up.
I was “mis-diagnosed” in 2012. My neurologist pandered to me while charting that he thought I was making things up (tremors and weakness). I found this out on my first visit to my new neurologist in 2014, who was furious at that “diagnosis” and diagnosed me with CBD within 1/2 hour, setting up scans, spinal tap, and recommendations to see a psychiatrist and counselor for help dealing with this new diagnosis. In 2017 my diagnosis was changed to PSP when my Dr noted my eyes showed jerky movement when trying to follow his finger. The cerebral ataxia with dementia diagnosis came from my neuro/psych (3 hour long) testing with a specialist. I just figure it means I walk funny and can’t remember things. 😉 My Dr said he had several patients with PSP, but I was his first to have cerebral involvement. Lucky me!
I have run-on too long, I know. Plus I really need my pain meds now. Thank you for understanding!
I m very sorry , this morning i fell nothing mayor , i can't do to much thanks for my angel that is my husband. if i don't have him i don't know what i do. be positive and strong , ninalulu from smithfield nc
What part of the world do you live? This can help us on here give our advice based on your home land.
I'm saddened to feel the sadness and isolation in your post. In a way though if you can make all these decisions for yourself and take control of what YOU want to happen now ,that will be the best thing for you through your journey. I hope the professionals you already have in place support you well.
Hi Sparkle (your username makes me smile). As you can see by my ridiculously (thank you spellcheck!) long replies, I haven’t had much chance to talk about this except to my counselor and Palliative care nurse once every 3 months. I am feeling pressure to accomplish a lot in the next month or so after waking up one morning unable to speak. I was gradually able to forcefully push out a few words at a time. We had 2 family events that same weekend, so especially difficult. It was more than laryngitis. I literally had to force one word out at a time. I still have some trouble talking, but it’s better...for now. I need to get everything in order before I’m unable to. I do have my DNR and Advance Directives (as it’s called here) in place. Just feeling overwhelmed at the moment, I guess. 😕.
Hi Deb, to be practical, you must request a consultation with a phono-audiologist. He will teach you some exercises that will also help you with swallowing. Like Luis Rodizio, I'm short because I do not speak English fluently.
My husband has died but I still stay on this site as I found it a lifesaver. Everyone here tells it as it is. We manage to find humour too.
I know that I often feel my family don't recognise my needs. I think it's often impossible for them to see it as it's so unbearable. I also know that I don't show my vulnerability easily. Ring any bells?
Hi Jean. Thank you for the welcome and kind words. I know we all would rather be anywhere but here. I’m so sorry for the loss of your husband. I’m happy that he’s been released from the clutches of the beast, though. Any loss of a LO can be unbearable but, especially so when the craziness of being a caregiver comes to a screeching halt. I know because I was the caregiver for my young son when he had cancer. Actually 2 cancers back-to-back. When he left this world, the crazy stopped and I had to find the new me going forward.
You’re right about the vulnerability, though. I’m a nurse (retired due to the beast) as is my daughter and DIL. I have always taken care of others. I don’t much like this role reversal but, as my son use to say “I’m glad it’s me that got this!”.
be strong , i know the feeling if idon't have my husband i don't know what to do i don't have nobody else , my kids are busy so I only have my husband , that i called my Angel , we are going to have 50 years of marriage .this morning i fell no bad , like always he was there. but be strong , love ninalulu71 from nc
Welcome to our family. You are absolutely not a spoiled child. In fact I was left impressed with how well you are coping.
But it does sound like you need a lot more support. The way you describe it sounds so lonely. Do you have anyone who can share the load a little more with you?
You are clearly strong and well organised, but someone to share the journey is so important and I get the impression those close to you are exceptionally tied up with other obligations.
Thank you Kevin. This will sound soooo pathetic, but I have no real friends except for family. We moved here in the middle of my son’s cancer treatments (crazy, I know). I was living in Rochester,Minn while Mayo Clinic treated him. When I was able to work again, I worked the night shift. My week consisted of working, sleeping and taking care of my children and hubby’s needs. Cleaning house, etc is just a given. 😆 I just never found time to socialize much and start a new friendship. The friend I had is close by but with our 20-year age difference, her new husband and baby and my PSP, we’ve drifted apart.
My 80 year old mother is the one person I can speak freely with. We’re at the same point in our lives now, thanks to PSP. She can still run circles around me and will probably out-live me! She was my rock when Tim was ill and now she’s my rock again. My hubby is my best friend, but he is having trouble adjusting to the new me and his extra responsibilities. It will sort itself out eventually.
It’s nice to finally find people who understand the ways PSP can uproot everyone’s lives. I truly appreciate knowing what’s ahead of me so I can plan accordingly.
Me too! I worked for the Health Service and did the typical long hours for years. I bet you know all about that one! No time to really socialise and we too moved just before the illness hit. So Liz has a few close friends who visit from London and I am pretty much solo apart from friendly neighbours. As you say, 'that's life.'
It's not sad, unfortunately it is the modern way.
Yes, despite my background I took a long time to adjust. I think we men are sometimes born a little slow on some things ;). Or was it just me?
It was reading this forum that got me to understand.
I'm so sorry to hear about Tim.
I'm pleased you've got your mother too.
I was worrying because I thought you might be very under-supported.
I do hope you get opportunities for nice things. Definitely go for the indoor lake and wave maker!
Hi Kevin. Thank you for your kind words. And, yes, i’ve found most men to be a little slow on some things-lol!
Just a little funny about my relationship with my 83 year old dad. He is slowly failing, becoming more forgetful, unsteady and sometimes choking on food or drink. I told him we should stick together at family gatherings. He is getting more unsteady, so we could share my walker. We could help each other during choking episodes, so my mom wouldn’t go into a tizzy over it. And,best of all, we would never run out of things to talk about as we both are so forgetful that we could have the same conversation repeatedly. (Yes, I’m a daddy’s girl)
Your post reminds me of my wife so much when you describe your symptoms, misdiagnosis, age, and other USA specific issues. It caused me to miss her heavily this morning. The most significant difference is your ability to communicate electronically. I often confused my family and friends because she quickly lost the ability to interact with electronic devices. I would write her emails, Facebook posts, sms, etc for her in her voice. Initially just dictating, then filling in details for coherency, then finally writing completely. They thought she could not speak, but could write. I think you should work diligrntly to keep this ability. It would have helped my wife cope.
The one interesting thing is that you said that you had migraines. My wife did also. I looked to see if there was any coorelation between migraine sufferers and individuals who develop psp/CBD and cand find any thing. I know that not everyone with migraines gets it, because it is more common than this disease. I may post that question to this forum.
This may be a cruel thing to say, but maybe having a family that doesn’t help much, helps you maintain some abilities. It makes me question myself. Did I help my wife too much? If she had to take care of things would have slowed the decline?
Please know that you are part of our family. You are loved. Although we can not help you physically, we are here for you emotionally and mentally. Even though this is your first post, I remember a number of your replies. You have helped me in those replies.
On a side note, I have a number of maternal relatives about 2 hours to the east of you in Oelwein. I however live in Texas.
Wishing you wisdom, strength, and slow progression of this disease.
You are one brave lady - keep in contact with this site . It served me in good stead whilst I nursed my wife through this illness over a period of five years . Sadly she passed away last year but the friends I made here will be with me always . I try to find a little humour where I can , it’s usually lurking in unexpected corners and I like to tell people how the seasons change in my beloved Devonshire country side and if it causes a few smiles or moments of pleasure then mission accomplished . I don’t post as much as I used to but I do pop up now and again and I sometimes wonder what new people to the site make of it - some cranky bloke whose got on this site by mistake maybe? Anyway I am here as are a huge number of wonderful people with a wealth of experience advice and love so rest assured you won’t ever be alone .
Thank you for your kind words Georgepa. All of you caregivers are hero’s to me! I know what it takes to care for people with these types of brain conditions, but not 24/7. I would only hope to be half as dedicated as you all are/have been. I’m sorry you lost your wife to this dreadful monster PSP. But she is whole now and the way you remember her best. I truly believe that because my faith has lead me through some really dark times. I have to believe they are waiting for us to rejoin them.
By the way- my family uses humor to get through the toughest times, too. So many horrible times filled with laughter- or a least a giggle.
I would love to hear about your Devonshire countryside. Undoubtedly more picturesque than our Iowa corn fields. Also I can’t believe you’re a “cranky bloke”, but if you really are, your my favorite type of patient to care for. Heck, I’m married to a cranky old man! 😂
Hi Deborah. Just wanted to welcome you aboard, but sorry you had to. It is good that you are managing your affairs while you are still able and have in place as you would want. I do hope you get the support you need. Love, nanny857 x
Well now you have joined this site you have got friends and from all over the world. You will find all the information invaluable. Kevin always has an answer and is an amazing man. I know what you mean about family . My husband has PSP and is now in a care homebut his family who think they are marvellousonly visit about every six weeks. They are always too busy but only an hours drive away. You just take care of yourself but busing this site fir the slightest help. Hugs Pauline x
Pauline- Thank you so much. This site with all of it’s hard-working, caring souls and the ones who are forced to battle daily with this beast, have already taught me so much. I know of no one near who has even heard of PSP, CBD or MSA. You’re right btw. Kevin really is a source of interesting information. I’m sad that we’re all here, but happy the way can be shared so one one walks alone.
Sorry- that last line should read “...no one...” My monster (PSP) is starting to show. Time for some sleep
Love to all 💕 Deborah
PS- You can call me Debbie or Deb, too. I pretty much answer to everything except “Cathy” because that’s my little sister and she’s the boss! She said so! 😉 Sometimes we’re all a little scared of her. 😂
Dear Deborah, you sound like you are one gutsy lady having nursed a son and then having to sort everything yourself to prepare for all that this wicked disease has to throw at you. I felt so sad reading that you are having to do this alone as I did all of this for my husband, Ben, who died in May. I just don't know what would have happened to him if I had left it all up to him. It's strange that some people just can't take on the caring role but that's the way it is and you are dealing with things with such grace and strength. I'm pleased you found this site, they are the most informative and supportive people you could wish to meet. Keep posting and we will be there for you.
Welcome Deborah, my mum has Psp and this group of fantastic people have been a real help, someone always seems to be here to help or to come up with solutions for problems..xx
Hi Deborah,
I just wanted to say that I think you are amazing!
Welcome to this wonderful family (who help me more than they know)
I deeply regret that PSP-Cerebellar has entered the house of Deborah that in a few sentences has moved me and showed that she is another person in this chat of great human quality, especially because she is a victim.
Next thing is to say that in this chat I have found colleagues with a great human quality who are always willing to help practically or psychologically.
I want to take this opportunity to express my admiration and gratitude to all of them who also know how to add a few drops of poetry and British humor to everything they say and do. I perceived in the conversation of Gmadeb chat in particular a fluidity and a human warmth that renews my faith in the human being.
Although I am Basque, my mother tongue is Spanish and in English I express myself with considerable difficulty with the help of Google. For that reason, perhaps, I tend to be very synthetic and practical, which may seem a little rough. I apologize.
I am not a physician nor my profession has been close to health care but I have been gathering information about the different types of PSP and the symptoms that may appear in the progression of the disease. I have also been collecting our particular experiences on PSP-RD that I will send you by private internal mail in the hope that you can find something useful.
According to my information, PSP-Cerebellar is a rare variation on how rare the PSP is. The only symptom I have detected is: Lack of coordination in the movement.
I join Bobby to wish you wisdom, courage, strength, and slow progression of this disease.
Dear Deborah, Your strength and humor going through this dreadful disease is amazing and truly inspirational. I do believe a family meeting is in order, and if you are having difficulty speaking, write down what you need. Someone to come in and clean the house and maybe prepare a couple of meals that can be frozen and used as needed. I can imagine if your husband is still working, caregiving has to be difficult. However, I think it is time your children help take on the role as well. It doesn’t have to be daily , but depending on where they live they can contribute. I know you are proud and have always been a caregiver, but now you need help and it is sad that it may be necessary to ask for help, but young people find it difficult to accept that their mother is unable to be the person she has always been and is not infallible.
We were not faced with this challenge until late in life, my husband was in his 80s when he began showing signs of the disease and our kids were in their 50s and able to take on different roles. They were scattered all over the country, but were able to contribute. When he passed away last month they were all feeling blessed that they had been apart of his care and his last years of life.
You are much younger and I am sure your children are young and just starting out in life, but I know they will regret not being there for you when you needed them. Give them the chance.
Peace be with you, and keep writing you are an inspiration to us all.
I really do not think you have any problem with your mind to write like you have and I understand how you feel about your husband because my husband has great difficulty accepting my PSP but he is very good and now cooks our meals etc .i do have help in the morning and at bedtime but I do spend quite a lot of time on my own because he says it is too much ,trouble to take me 😩 So keep your chin up and stay at home as long as you can..... you must remember that none of us are getting any ny ounger younger and it is hard for all the family
This is a new "family" and we are grateful that you joined us. I am new to this site but find it welcoming, supportive and informative.
Have you read the book, "Being Mortal" by (Dr.) Atul Gawande? I highly recommend it -- not a long text, but thought provoking. It describes this surgeon's encounter with the need to allow/encourage patients to be in charge, to, as he puts it, "write the story" of their final illnesses. Doctors, he notes, tend to run through a checklist of what medical science can do for individuals who are very seriously ill, but fail to remind patients that it is they who really own their illness and time on this earth. I found it empowering at a time when my husband (CBD patient) and I were feeling overwhelmed by medical events rushing at us and wanted to engage more actively in determining the course of the next month or year or two.
Dear Gma Deb - I just want to say that I am so proud of you. Getting our ducks in a row is not easy. I am still working on that one (always have been). It is hard for family members to understand PSP but luckily more information is coming to light. Sending You Hugs - Grannie B
Hi Deb, I totally understand your feelings. I have no children, few friends as they are still working full time and have busy lives so can only pop round when they have a ‘window’. I have a brother in New Zealand and we catch up on Skype about once a month but it’s not like being with him. My other brother is in the next village, but we are estranged as his partner and I don’t hit it off.
My husband has to work full time and although I worked up until last Christmas it’s not possible now. He has been so used to me being so capable that it has hit hard. This site has been a godsend to me but I spend so much time alone it’s driving me mad. Trying to work everything out is so brain numbing and feel the need to offload like you every now and then.
Outsiders keep telling me to find new hobbies but when everything I loved relied on a good degree of mobility it’s hard to find things that suit especially as this horror tends toward apathy.
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Me again... progression with mum
Can anybody tell me how you no someone is in final stages of life
Taking Time for YOU and THEM
You can't make this stuff up!
