Question: How did you first know something was wrong?

I'm just interested to hear everyone's views on what first happened to make you think there was something wrong? My Dad suffered with vasovagal syncope, which is fainting, before he fainted he would start to yawn uncontrollably and then he felt very hot and was sick whilst passed out. When Dad came round he never had any recollection of it! After that he walking got slower and slower and also the constant need for to urinate.

What's your story?

Much love to all x

89 Replies

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  • Morning Amanda

    Firstly hope things are going well for you

    About 4yrs ago he started with falls you could say he was falling roughly 100 times per year .then they said vascular dementia which he hasn't got he hasn't deteriorated in that for years then his eyes started having the gazed look walking was shuffled gait ,then Parkinsonism and also salts got involved with his swallowing. Finally last years they then said psp .

    I knew maybe 3yrs ago that there was something underlining his illnesses but could not think what .

    Sue x

  • Hi Sue, yeah all ok here, how bout you?

    Thank you for your answer, I think it's interesting and very informative to hear everyone's view!

    My Dad started falling shortly after the vasovagal syncope was diagnosed.

    Hugs x

  • Hi Amanda

    Glad it's going well

    Here we are still in the same boat no package yet .I have now put formal complaint to chc and asc he's been ready for home 6 weeks ago.

    Sue x

  • That is so bad, Sue. These are precious weeks. So much stress for you both.

    Big hug. Hope they react quickly.

    love Jean xx

  • Hi jean

    Thank you

    I hope they do too. I've never heard anything like this at all but unfortunately they must be others in the same situation

    Sue x

  • Its just so inefficient as well. Think of the cost of making it so difficult. It pleases no-one.

    Jean x

  • Why can you not go and pick him up...I know you probably told me.....

  • Hi abirke

    I have health issues and unfortunately we have to have care in place before he can come home

    Sue x

  • Surely if you give someone in CHC a ring and tell them how much your husband is costing them a day being in a hospital as opposed to home...someone would get on it.....

    I'm just sorry you are still fighting this fight

    AVB

  • I've sent an email to the governance officer of complaints in CHC so they are now looking into it so hopefully something might progress with a bit of luck

    Sue x

  • Let's hope and pray this goes somewhere!

  • wait, I thought you did pick him up?

  • I'm so sorry Sue!! Soooo stressful!! Please keep us posted!! X

  • Good luck Sue

    It will pan out I'm sure.

    It must be hard waiting for them.

    Best

    Kevin

    x

  • Hi Kevin

    Hope your both well

    Yes it's getting hard just feel that there's a brick wall always in front.

    Sue x

  • Yup

    There's always that.

    So where did you park your bulldozer last?

    Waiving... You will get there.

    Kevin

    x

  • There's one in hospital grounds I could use that lol

    Sue x

  • Good idea K1...say hi to the wife for me...

  • Hi

    First thing we noticed was the falling, which increased to at least 10 times a week, his walking became slower and unsteady. First diagnosis was vascular dementia, then 6 months later Lewy bodies, then finally 1 year later PSP.

    Now C shuffles very slowly with a walker, never goes out only to neurologist appointments every 3 to 6 months, as it causes him so much anxiety. Constantly shuffling back and forth to the toilet, as always needs to wee, often not quiet making it.

    C gets very confused aswell, not knowing what time of day it is, whether he has just been to the toilet, even which way to get to the toilet, whether he has eaten or not.

    Cs coughing a lot now, so assume this is the start of the struggle with swallowing.

    He has a lot of pain in his ankles and shins which I don't know whether that's PSP or something else.

    I think it took about 2 years to properly diagnose.

    Love and hugs to all

    Hxx

    .

  • Thanks for responding Helen! If the hospice are involved you can ask for pain patches equally you can ask the gp. I think the pain is Psp related x

  • Hello Helen all sounds very familiar although Brian has progressed and no longer walks at all . I was at my wits end as he was getting me up on average of5 times a night to have a wee and once an hour through the day. I was unable to leave him and I was getting exhausted. After having a melt down infront of the District Nurse she suggested him using a conveen sheath as he wouldn't have a catheter. It has changed my life , maybe you should ask about C using one will save all the painful trips to the loo.

    Keep smiling Cilla x

  • Thank you Cilla I will ask about them

    Hxxx

  • Hi Helen,

    If he does'nt know whether he just came or is going to the bathroom it may be that he is not voiding completely . If he has a bit of a dementia, this lack of complete voiding may add to the confusion . When he shuffles he is not making use of all his leg muscles ; blood pooling and just atrophy can cause pain....If he cannot stand or walk independently try these exercises with him in a seated chair

    March, bend one leg bring knee as high as he can then bring down and march with other leg

    leg raise; keep leg straight and raise hold for several seconds...one at a time if needed

    Toe taps...if he likes music, help him to keep time with his fave song

    Heal taps same as above but with the heal...this is good for calves

    Rotating feet; leg straight point foot make circles 3x one way 3x the other or as many as he can do

    if he can get on a stationary bike that has more of a chair than a bike seat ,,,that is really good....my husband did this in his later days ...10minutes or as long as he can....

    squeeze buttocks muscles together...this kind of forces you to use your core muscles too....

    massage; I did this with B when he went to bed....start from toes and just gently massage up to the hips or go higher I usually finished with a face massage :)

    He can also get better blood circulation doing things with his arms.

    Raising above the head '

    rotating with arm straight out from side or straight out in front

    swing arms as if he is running

    rotate hands one way then the other

    rotate shoulders one way then the other

    Just a few things to get muscles active and not feeling so painful....

    Check with doctor make sure pain isn't from something else...but I found B responded pretty well from this....

    Goodluck AVB

  • Thank you abirke. I will try some of this and see if this helps, thank you for taking the time.

    Love and hugs

    Hxx

  • Hey who doesn't love a massage...and you can go as frisky or romantic or just plain kneeding the bread as you want....

    ;)

    AVB

  • BRILLIANT HELP THERE ABIRKE .. I CAN CONFIRM ALL THE EXERCISES THAT YOU MENTION ARE GOOD AS MY PHYSIO THERAPIST IN FRANCE USED TO GET ME TO DO THEM 3X A WEEK

  • ShaSha how are you well circulate I do hope ;)

    AVB

  • I. Am good thanks. Though. I am. Not walkingI so well and my.eyes are getting twotsri

  • Steve had a silent stroke about six years ago. Thought all his symptoms were stroke related. One day he fell some many times, I thought he had had another stroke, that's when we got the PSP diagnosis, about 3,1/2 years before his death. With hindsight, he was having PSP symptoms before the stroke and I was starting to worry that there was something wrong. The spacial awareness was starting to go, a good twenty years ago!!!

    Lots of love

    Anne

  • Thanks Anne, very informative! How are you doing? X

  • Pretty flat! Can't seem to get any motivation going. Although off to Gran Canaria on Thursday with my daughter, which should be fun.

    How's you?

    Lots of love

    Anne

  • Bless you heady! Life must seem to very strange and you must be incredibly sad!! Sending you hugest hugs darling! I'm ok thanks a little knackered but nothing new there lol! I've been to Gran Canaria with Mum and Dad some years ago, it was lovely! A funny memory I wanted to go to the beach for the day, mum n dad didn't, so I called a taxi and asked the driver to take me to a quite part of the beach, bugger me he sent me to a bloody nudey beach!! I'm sure you and your daughter will enjoy! 🍷🌞✈️🏝⛵️🍹 X

  • I guarentee you won't come home flat....if you try....The best thing I can do is find a hundred year old snapping turtle on my walk today ....and it was great!

    Have a great time Anne

    ((HUGS))

    AVB

  • My husband started falling backwards and doing silly things like buying front and rear number plates for a trailer and he just couldn't understand why 2 were not needed. This was July 12 He was diagnosed July 14. Now he has no mobility or balance to sit in chair properly.Extremely poor coordination, confusion and a host of other things associated with psp.On hindsight he was making stupid decisions before all of this, we used to ask him how he managed to run a shift at work and delegate !!!!' GW

  • Thanks GW, it's soooo bloody sad!! X

  • My son's first symptoms appeared March 2014....Double Vision and slurred speech. At the end his double vision became near blindness. Two years later swallowing problems. He NEVER fell, mostly because when he realized his balance was poor, someone would be by him as he walked. Within three years he lost his speech, but still communicated with hand gestures. The day before he died, all with pointing and thumbs up or down, he asked if I had paid the gardener (it was the day of the month to pay the gardener). My son did NOT have memory problems, remembering where he had put things (tax records, passwords, etc). He did have compulsion problems....plenty of clocks, wearing a watch to bed with a flashlight to see the time during the night. Once he was helped up he could walk short distances with a walker...up to four days before his death. When he could not see he listened to taped books and his radio. Towards the end he just sat in his chair. He was DX with PSP on Jan 4, 2017. He had been Dx with Parkinson's Jan 2015. He took to his bed on a Sunday and died on a Thursday.

    He got his first case of aspiration pneumonia Nov, 2016. Prior he was doing well, walking unintended, feeding and dressing himself, speech excellent, etc. Lots of phlegm and mucous and drooling after that. It was a turning point. His second case appeared March 2017. He failed the swallowing test. He opted for a PEG, fed every two hours. It was all downhill after that. He died May 4, 2017 at age 55 years old. Much too young. I miss my son. I do NOT miss is suffering.

  • Sooo heartbreaking and I'm sooo sorry, parents shouldn't lose their children first! But I agree that now he is free of this evil illness and at peace! Be kind to yourself x

  • We seldom hear from parents here on this forum, usually it's spouses or adult children. I'm very saddened by your loss of your son. And he went so quick. My Dad was 20+ years older than your son but like your son, once he started going downhill there was no stopping. And your loss is so recent too, just 3 days after I lost Daddy. I was his caretaker and like you I don't miss his suffering but I miss him so much. You lost your SON to Psp. That's so very unfair, I hate psp so much, I'm very sorry. ~Sheila

  • I began with significant cognitive decline. Geriatrist dx me with early onset dementia, he ordered an MRI. When we reviewed the results, he said that he saw some abnormalities with the scan but could not speak to the issue, he then referred me to a neurologist who had some suspicions after concluded a number of tests. This neurologist the referred me to a neuropthamologist who dx me with PSP-P. In hindsight, symptoms had appeared well before the dx. Eye lids blinking more frequently than usual, backward falls... especially with my eyes closed. Like so many others, I just brushed the symptoms off.

  • Bless you daddyt thank you for sharing from a Psp patients view! Much love x

  • It's always nice to hear from you. Reading your posts, you have a brilliant mind, one would never guess you have psp. God bless you for sharing your insight with us. May you continue to kick psp's ugly rearend! ~Sheila

  • Hello Amanda.

    I was diagnosed with Parkinson's in February 2011. I was then 62 years old. But after a few years ,I wasn't"t too happy with my neurologist and our family doctor referred me to an expert pharmaneurologist in the Salpetriere hospital in Paris,one of the most famous research centers for brain diseases in France, if not Europe. And this excellent doctor suspected rather a parkinson'splus syndrome, named PSP. And since then , I have had frequent falls, up to 4 times a day, and a problem with my eyelids.wanting to close All the time. But it all started out with , I think, slower walking and microphaelia, and I must say, I have no handwriting at all left in me. But the doctor says I have a very slowly progressing PSP.

    Although I don't drive anymore (to my great regret, because you lose so much of our indépendance), my husband takes me everywhere, and I still do yoga and walk the dog.. With me the falling always start when I have to do the first few steps,not once I am walking..

    For the rest I try to Be as normal as possible and I of course, like so many others, love this caring community of PSP patients.

    I wish you all the best, it won't be easy, but if ever you need to cry out, you know where to go to. Bisous, as they say In france, Annemarie.

  • Thank you AnneMarie for sharing from a Psp patients point of view! Sending you much love and strength x

  • It has to take so much inner fortitude to write about and share about what this brutal disease is doing to you. I admire you for that and for keeping up the fight against the evil one / psp for a very long time! Be blessed, ~Sheila

  • We also got good response from Hopitel Pitie-Salpetriere for my wife first from Professor Agid, the number one expert over there. That was in 2006, at the very beginning of her first symptoma: micro-writing. This very well-known professor had the humility to say at that time: I do not know what it is but it is not Parkinson.

    He was right and there were too little symptoma to make a better diagnostic at the time 'all these neurological diseases are still mostly diagnosed via symptoms which shows how poor are the modern investigation tools for the brain!) . Some years later as more symptoms developed (balance, vision, deglutition etc) my wife was finally diagnosed with a very slow evolving form of PSP. 11 years now since first symptom!

    We stopped taking any medicine (after years of useless cinemet). She only takes Co-enzyme Q10 and the methyl form of vitamin B12 which both are supposed to help oxygenate the brain by crossing the BBB (Brain Blood Barrier). Her PSP is still evolving very slowly. Which is not necessarily good news. I am going towards my 73rd birthday, 11 years older than her. She has no brother-sister and no children. I am trying to think on how to take care of her once I disappear!

  • Thx you for responding you are definitely in a very very difficult situation being 11 years older! Sending hugs and strength x

  • My symptoms started 12 months ago with a left arm that was weak and moved slowly........ Then I felt my balance was not good.

    I went to doctor thinking I might have Ataxia. She said I needed a MRI scan that showed parietal lobe atrophy which, in fact, is typical of CBD.

    Because the wait was 34 weeks to see a neurologist I paid £220 and saw a neurologist privately within 2 weeks and after a 45 minute consultation he told me that I had CBD. This diagnosis was made 22nd February this year and things have progressed but only with my arm and balance.

    I continue on this journey,

    Patrick.

  • Bless you Patrick! My Dad paid privately initially too! Much love x

  • I realised my husband had a problem september 2015.I wasn't happy with some things he did , spilling his cup of tea ,dropping food down his clothing , and generally getting clumsy, crying at any thing, We were told he had had a TIA (mini stroke) .Feb 16 .After ct scan, we were told its not a TIA ,Then the gp said you need to see a neurologist, any way to cut a long story short.he had mri scans and datt scans etc. After the results, were told he had PSP that in oct 16... He's starting to get unsteady on his feet, sometimes has slured speech , and trouble forming sentences at times, I can now see after reading the posts on this site and other information, I had from the PSP associaton.hes has had this for longer than I thought. The thing he hates most is not being able to do, the odd jobs around the house.All of which are gradually being taken over by me .mostly the cooking, and driving , both jobs are the ones I hate most..light at the end of the tunnel I know my way too all the local restaurants round the area..so we go as many times as we can.....Brenda. .xx

  • Bless you both Brenda and thank you for sharing! Nothing about Psp is easy! Hugs x

  • Do it while you can, Brenda !!!

    love, Jean x

  • Thank you, ...Brenda

  • Proud of you mum

    Pj xx

  • John's personality changed. He became very forgetful, very aggressive blaming me for everything he did i.e. Leaving freezer doors open. He fell backwards off a ladder and had a couple more falls. This went on for about 2/3 years. Then he just withdrew in himself. He was first diagnosed with Ataxia. Glad to hear things have settled down for you. Xx

  • Thx for your response Vron and how are you? X

    Ps I'm going to see dad later with mum, probably around 2, love to catch up with you sometime x

  • I'm out today otherwise I'd come round to see you. I'm fine much better after respite break although john wasn't happy without me. Busy with appointments at the moment. I think john has the slow kind of PSP because he's had big for about 8 years. He couldn't possibly reply like some patients have. Take care and we'll try and meet up sometime. Xx

  • Aww I'm so pleased you managed respite! I can imagine how John wasn't happy but it's absolutely imperative that we look after ourselves by taking regular respite!! Hugs to you both x

  • Dad slowed down, his interest in long walks around our locality, movie watching, music, chit-chat with friends, writing, basically everything that he was known for, was all lost.

    Then frequent falls started and then the major fall that broke his hip bone 1.5 months back happened. The battery of tests including clinical evaluation that followed brought out that it was actually PSP. Now all we get to see every day is pain & questions in his eyes on whats going on.

    Sorry - not in the right frame of mind after the new test results today that indicates low sodium/potassium levels in dad. Every day is different.

  • Simply heartbreaking! ❤️ X

  • Is the low sodium due to the medication? It caused very low blood pressure in my dad and he was told to eat more salty snacks, instant soups were his go-to snack.

  • thanks for checking & the info.

    How would i know if whether it is due to medication? Dad had high blood pressure for few years now - wouldn't having salty snack increase it even further?

  • My dad had medium to high blood pressure but the medication (I'd have to find out which one, maybe the Levodopa, or the anti-epileptic one they made him take) made it drop enormously that we were even more worried about him falling over - the doctor recommended eating salty snacks to get it higher - she could not lower the medication. If your Dad takes medication, check the side effects.

  • Daddy's first symptom was double vision, that was about 11 years ago, and something I've just recently learned is at that time 11 yrs ago he was sometimes mean-spirited towards his wife to whom he'd been happily married for about 20 years. Daddy passed away a couple weeks ago, May 1, 2017.

    After the 1st symptoms, which wasn't correctly diagnosed and was eventually MISdiagnosed as Parkinson's, it was years before the backwards falls started and that stage lasted a couple years. Psp can also cause no impulse control so that combined with falling backwards and being unable to reach out to break his falls, therefor falling as a tall tree falls, with a horrible crash, was... I have no words.

    One of the most difficult things for me at this time of mourning is when I remember times he suffered and how very hard he struggled. And by the way, there are medical HELMETS made for protecting the head from falls which I didn't know at the time and I'm sure Daddy would've hated wearing a helmet but I'd have tried it because I was desperate to help him more than was possible. I never thought I could see anything as sad as my sweet Mama dying at age 34 of aggressive cancer. I was 16 with 2 younger siblings including a 7 year old. She was misdiagnosed at first, then after "exploratory surgery" diagnosed cancer all over her body including her liver, she was gone in 3 months, but being my dad's caretaker for the last 2 years of the 11 years he lived with psp was the hardest thing i've ever done but one of the most honorable, too.

    There were times I almost lost sight of that when he tested my patience, I ruined my lower back from lifting him off the floor too many times, but I'd do it all over again, and I'd have helped him forever if he'd have lived longer.

    The incontinence came on the heels of the frequent hard falls backwards. This created new challenges, along with a urinary tract infection.

    What many doctors and others are unaware of is ANY infection added to the psp, can cause the sufferer's condition to quickly PLUMMET. It gave my dad some dementia during these times and even a few hallucinations but thankfully not frightening ones. Once the UTI was correctly dx and treated, he'd bounce back to the plateau he was on just prior to the infection and my despair would turn to delight... but not for long, of course.

    Another unusual symptom of psp is the handwriting may get so small, and someone mentioned he can no longer write. And Daddy didn't lose all interest in things he cared about but in retrospect he wasn't as interested at times as was normal for him. His memory declined but only slightly at first and I let myself think it was just a normal part of getting older.

    I look forward to the day I'll see Daddy again, and Mama. Sorry to have digressed so much... tell me again, what WAS the question haha!

  • Bless you darling! You must be finding life so difficult and strange now?! Be kind to yourself, please!! X

  • It started five years ago, a kind of 'epileptic' episode in his sleep (never had epilepsy before or after) - treated with anti-fit drugs and no more driving. He complained of his breathing, not being able to get enough oxygen, even when breathing deeply or yawning. Not sure about his walking, scared of being 'too tired' to continue or falling. So he stopped doing the long walks in nature he used to do. Then falling, losing his balance. And come to think of it, he had a bad fall also about five years ago, but forward, bang into the corner of a cabinet, gash in his forehead. PSP or just loss of balance like we can all have? Then diagnosed with Parkinson's. A year later, after more falls and losing strength in his hands and legs, with speech and swallowing getting worse, diagnosed with PSP although the Parkinson's label stuck everywhere, much to his annoyance. He would have been happy with the current PSPA campaign, it's NOT Parkinson's!! He never really had the classic eye problems, more trouble reading or staying awake because of all the damn medication that didn't really work.

  • Thank you so much for sharing lieve x

  • Mom was unable to speak normally. She sounded as if she'd had a stroke. She was diagnosed in 2015 after an MRI. Her neurologist was very matter of fact: "she has PSP, there's no cure and nothing we can do for her, here's a pamphlet". Last year we decided (the 5 siblings) that for safety reasons, Mom couldn't be alone any more. We all take shifts so that there's always someone here to help her now. Her changes are subtle and slow until I compare to last year. She needs help with everything now. She doesn't fall often but she chokes on food and drink all the time. I suspect she'll have aspiration pneumonia at some point. She's opted for "comfort care only" so she won't get a feeding peg or antibiotics. Mom is on palliative care. Palliative decides when she transitions to hospice. In hindsight, I believe Mom is about four to five years into this.

  • Again thank you for sharing, so incredibly sad x

  • A little bit like my dad - he didn't fall that much anymore because he couldn't walk anymore, just from wheelchair to reclining chair - but his breathing and swallowing were so painful. His chest was hurting from all the coughing but the doctor could not detect any infections (which he had had regularly). In the end, he passed away in his sleep, according to a friend who was watching him, sat on a chair just outside his downstairs bedroom, he heard some laboured breathing, some coughing, so I believe his breathing failed. He had lost so much weight - was very fragile too, so maybe other things failed. The nurse had just suggested palliative care and thank god he never had to go to a home/hospice. A month on and I miss him so much - but we're all grateful for his gentle slipping away.

  • I'm so sorry for your loss. It is scary knowing that the end is coming and wondering what is coming that's where I'm at. Chip is getting worse more stiff every day and forgetting words . God Bless you.

  • It is very scary - you try and prepare for the worst and hope for the best (the least suffering). We had been to visit care homes, made a Living Will together - and in the end we didn't need any of it. PSP is so similar and yet so different for each person. A peaceful and merciful end - that's what we all hope for. I hope it will be so for Chip, whenever his time is there. Warm hug to you xx

  • Thanks so much yes peaceful for all of our loved ones. It is so irritating that Doctors don't have anything to help them that we have to research and go the Doctor and try to talk with them. Love you praying for all our loved ones and for peace for us care givers.🌹🌹🥀

  • Chris went and had happy chats with our lady doctor for years about him feeling giddy. Then I noticed things like getting lost and falling.

    I thought he had had a mini-stroke - he was very " doddery "- so went with him to the doctor and said he needed to see a neurologist. [ he had already seen a cardiologist, audiologist and throat specialist ]

    We were lucky in that the neurologist was aware of PSP and diagnosed it immediately. All sorts of other symptoms immediately made sense. I knew it was correct, although shocked.

    This site has been the life-saver !!!

    love, Jean xx

  • George was not well for a long time, doctors kept saying nothing wrong with him, he was coughing a lot, they said it was the medication he was in, falling as well some very bad falls, down a set of concrete stairs onto the pavement, lucky he never broke anything. We went on holiday to Cyprus he was unwell, we went to a private doctor, who diagnosed PSP, told us when we came home to ask to go to queens square in London, diagnosed again in 2015 in London. Yvonne xxxxx

  • Thx you Yvonne, this is all so very informative! X

  • Bless you Jean, thanks for sharing x

  • My Don's very first symptom was excessive salivation.His primary care physician sent him to neurologist who dx Parkinsons.He went with that dx for 7 yrs although neurologist never thought it was " typical Parkinsons" Never had tremors but fell a lot,probably at least once a day.Then last year neurologist noticed the eye movements that made him suspect PSP.Sent him to movement disorder specialist who confirmed that dx.

    He can still walk with assistance to keep hom from falling.Cannot keep eyes open most of the time.He is beginning to have swallowing and choking problems.Having some incontinence issues also.

    Mostly we just sit at home-I am at his beck and call 24/7.

  • Bless you both Jan! Psp is so vengeful! Please take care and thank you for sharing x

  • I've already told our life story, but we were one of the "fortunate ones" in that I started googling Parkinsons disease when my daughter's nurse-friend said it sounded like PD. I was not convinced and found PSP online when looking at PD symptoms! At the session with his neurologist, I asked doc if it could be PSP....he did a downward gaze test, B flunked it with flying colors and the rest is history!

    Remember folks you are your Loved ones and your greatest advocate.....and thank God for Google!

    AVB

  • Thx you AVB! Hugs x

  • I think that my first happened a long time ago, when my handwriting began to deteriorate although I had no other symptoms and mistakenly thought that the handwriting problem was due to the prescription for specs needed checking and renewing. As a result I went to the optician for eye tests and in the space of just over a year spent about £1,000 on new specs, each pair being effective only for about 6 weeks. I can actually now date the timing of this change from the course notes I made for an Italian course that I attended for many years: in 2011 the writing is fine, the next year it's begining to look a bit uncertain and much smalle ( and I remember thinking, fleetingly, that It was looking a bit like the hand of an elderly acquaintance who had Parkinson's, then in 2012 it becomes very small and poorly formed but by this time I had another problem which worried me more - I began to have problems with walking - we had always loved walking and spent our holidays fell walking in the Yorkshire Dales with children and dogs, eventually buying a cottage up there as a holiday base. Weekends at home always involved a walk with a local walking club and in 2008 we walked the whole of the South Downs way with a group of others. (just over100 miles in 8 days). To begin with in 2012 it was merely a question of not being able to keep up the speed, this got worse and then I started to feel uncertain about walking in confined spaces. Went to the GP, who seemed unimpressed but did send me for some X-rays and reported that they did not reveal any significant changes- I had had osteo arthritis of the lower spine for some years - and so I went home with tail between legs feeling that I'd complained about nothing. As walking became more of a problem I would go back only to meet the same level of response until, in October 2014 I had two falls within three days, the second of which involved a sudden and totally unexplainable loss of balance and a very heavy fall in s confined space. At my next visit to the GP, I had to get really angry before he agreed to refer me to a specialist physiotherapist and things then moved on with speed. An MRI scan of my back revealed the osteo arthritis in all its horror but did not explain my hesitation/freezing and so the physio advised my Gp to arrange for me too see a neurologist. Because of delays in the. NHS I used membership of a Civil Service Healh Insurance Scheme and saw consultant neurologists privately.. An MRI brain scan revealed fairly extensive white matter on the brain and eventually was told that I had either Parkinson's or PSP, probably the former. When my health insurance cover ran out, I was referred back to the NHS and quite quickly saw a consultant neurologist who specaiised in movement problems who said I did not have Parkinson's bu did have PSP - 5th October 2015.

    My reaction was one of total despair and I sank into a deep, deep, depression until after Christmas when I did begin to pull myself up. We have a Specalist Parkinson's nurse here in West Kent and she has been just fantastically helpful and supportive; she says that i am still in the early stages of the illness and that, although I do have some very bad times, overall she doesn't think she has noticed much deterioration in the past 2 years.

    We have recently admitted that we cannot cope any longer with our 3 storey late Victorian house and have a buyer; we are to move to a retirement apartment but have yet to decide which of two possibles we will choose. So, in that respect at least there is some progress!

    Hope this is of interest to some of you

    Ann

  • Bless you thank you so much for responding Ann! It's very interesting to read from a Psp patients point of view! However I'm truly sorry that you have Psp and send you lots of love and strength!! Please keep us up to date with how you are getting on!! X

  • Mums started with personality changes about 5 years ago. No one but me noticed it & everyone thought I was making a fuss. She became withdrawn & less interested in my life (we'd been very close especially since I'd had my daughters now 12 & 14). Then occasional balance loss & occasional falls. She was refered to a heart surgeon who said she had sudden drop syndrome (like hell she did!). Thrn about 2 years ago Dad started to agree with me that something was up....falls more frequent / slurring speech & then mum admitted to having been 'dizzy' for about 5 years!! She stopped driving early 2016. She was diagnosed August 2016. Cannot now walk unaided - can't sit down or stand unaided - can no longer wash / dress herself. Her voice is much quieter. Can just lift a cup & messily feed herself. Has small chokes several times a day - but nothing major. Personality changed enormously - we're left with a shadow of the fabulous woman she was. My Dads suffering hugely looking after her 24/7 - With occasional carers coming in for a few hours a week. It's a sad & difficult path we all tread! Biggest Love to you all X

  • Thx you Suze for your answer! So very sad!! X

  • Hope all ok with you Satt - hugs to you X

  • All good thx Hun, hope you are ok too? Big hugs ❤️ X

  • Similar experiences as you - everyone thought I was causing a fuss. I've been character assissinated by my mother numerous times in front of health card professionals and others - to the point I want to cry. Yesterday while she was being assessed for palliative care, I was told that I was a bull****** and that I was only doing this (getting palliative care on board) for my convenience. Her personality has changed so much - we were once as close as anyone can be - for 50 years she was my best friend; now she routinely is manipulative (lying) and suspicious of me. These relationship changing behaviors seem to be a cruel twist on an already devastating condition.

  • Interesting thread.

    I first noticed something odd in 2004 - nearly 8 or nine years before the official diagnosis of CBD. The first symptom was on a trip to London - my mother would not walk by my side rather five or six steps behind me. I would stop to wait for her to catch up to me and she would stop as soon as I stopped five or six steps behind me. It was so prevalent throughout the trip that more than once I asked her why she was stopping and asked her to hurry up because she would simply stop in the middle of a busy intersection if I had stopped on the other side to wait for her to finish crossing. (I now know this to be evidence of a compromised executive functions capability - which has remained as a predominant symptom of hers)

    The next several years I noticed lack of spatial orientation - she would pull up to drive-through windows and be off by four or 5 feet. I was calling my sister who lived abroad and telling her something wasn't right with mom (2006).

    Eventually her gate started looking like there was a problem and a doctor spotted her on the street and asked her to come in for an assessment they found nothing in an MRI

    She eventually progressed to having a constant runny nose and was checked for sinus problems she also had a heart arrhythmia that she thought was a primary driver for her exhaustion and dizzy sensations (they were corrected but her symptoms didn't improve)

    Her personality started changing and she voiced that she had trouble articulating words or thoughts. She fell in 2012 off the side of her bed which resulted in a chronic limp left arm - she was checked for stroke but they found nothing. It took several more years for - at first, a diagnosis of atypical Parkinson's, then eventually CBD (last dx in 2014 - only 3 years ago - but by my timeline it appears that she's had this for at least 13 years). At this point she is now in an assisted living facility and can only minimally assist in transfers to her chair from bed.

    My mother was an exceedingly healthy person prior to the diagnosis of CBD she ate well and exercise every day and never took any sort of prescribed medication - this may have contributed to helping her manage this condition for as long as she has and surviving several very nasty falls including a fall down a full set of stairs .

  • Thank you for responding! So incredibly sad to read! X

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