Chris

Hi new to the psp support not sure if I'm doing this right or not , so at end of this if I get a reply I'll know I'm on the right track !

Hubby George diagnosed with Parkinson's 2013 , then in May 2014 rediagnosed with PSP . George has slurred speech , and weakness in right side , he informed me last night that his left side feels the same now .

We have two daughters who live 5hrs drive away and are very supportive , but other family members just don't get the gist !

Chris

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  • Hi Chris welcome to the family, we are all here if you need a shoulder to cry on. My husband also George was diagnosed in May 2014 and again in January 2015, it is a horrible illness, George is 95% in a wheelchair, life is difficult, but as we say one day at a time. Keep posting everyone is lovely on here, always ready to help. Yvonne xxxxx

  • Thank you so much for answering , I've never been onto anything like this so wasn't sure if I had set it up right .

    George and I live in Bright North East Victoria Australia , do u live in oz ?

    I sometimes wonder whether George has been diagnosed right but his neurologist informs he is right .

    Parkinsons was his first diagnosis in October 2013 two days after retiring , then in May 2014 diagnosed with PSP by a professor of neurology in Melbourne . The change I c in George over the last few months is his movements a lot slower , speech more slurry , weakness in right side , then informed me last night his left side especially the arms feels the same . Iv read a lot about psp but have not been able to chat to someone who is a carer to know if their spouse has the same symptoms .

    Thanks Yvonne for answering

    Chris

  • Hi, Chris. You'll find there are folk here from all over, a few from oz. I'm in the northeastern u.s. The time difference can make it seem that no one is about, but you'll have more replies when it's morning in England, I bet. Hang on. This is a great community. You are in the right place. Love, Easterncedar

  • Hi there thanks for your reply , we have just been to c our local GP for Georges 6 month checkup , same old advise , lose weight move more , we know that but it's hard when all George seems to look for is food . I think it's his way of coping .

    Next step is to c the continence nurse to show him how to use catheter , no op or meds because of psp . He wets himself can't get to the loo quick enough , poor man .

    Good luck to u all on your journeys

    Chris

  • Chris we live in the UK, our Don was in Australia for 2 years, and we managed to get out there, we were staying in the Sunshine Coast, and spent a bit of time in Sydney. Sending you a big hug, as we all need one sometimes. Yvonne xxxxx

  • Hi Yvonne , I used to live in England , migrated to oz when I was twenty two , with George our baby girl and a Hoover vacumn cleaner ( we were told electrical stuff was very expensive in oz ) !! we stuffed our vacumn cleaner with our best cutlery set , still have the cutlery but not the vacume !

    All my family live in England , my husbands family live here in oz , we all live reasonably close by , 3 brothers within 1hr away , 3 others in Melbourne 3hrs away .

    Yes I do realise they find it hard to accept Georges illness , it's very confronting .

    Thanks for the hug ๐Ÿ˜˜Chris

  • Chris families are funny aren't they, people sometimes think things will just go away. George did not speak to his family for a very long time, I managed when we went to Cyprus, where they all live, to get them all back together again. Felt like I achieved what I went for. The weather must be getting warmer in Australia. Love Yvonne xxxxxxx

  • Hi Yvonne ,

    Yes the weather is so warm now , unreal for first month of spring to b so warm temperatures not usually high 20s . Going to b a hot summer I think .

    Tho today we had a downpour of rain first for weeks , and expect more the next few days so that's good we need it here . There's always threat of fire when it's hot and dry . Still that's something we live with .

    Young woman who my young daughter has met online Facebook I think , lives here in oz has raised$37000 for psp towards research . There was a big marathon for running for a cause and she entered that and raised$7500 just on that day . Won't help our darlings but may b a cure in years to come . Hi to everyone on this site .

    Chris hugs to everyone ๐Ÿ˜˜

  • Hi Chris should I say glad you had some rain, we have got a nice sunny day, but still a bit cold.

    Peter Jones lives in Australia, he has got PSP, he is lovely, makes you laugh, look out for he's posts.

    Fundraising is so good, will help other with this horrible illness. Yvonne xxxxx

  • Hi Yvonne who is Peter jones ?

  • Why would you not be welcome here? PSP is the great leveller. Sadly, I am now too far gone to be of practical help but can certainly tell you what the doctors won't. Keep your spirits up. It seems that most people are diagnosed with Parkinson's at first - I was a couple of years ago - but when the disease kicks in it does with a vengeance and is plainly apparent to all except, sadly, the English medical profession. I don't know how things are in Australia. My advice, for what it's worth, is to buy George his own wheelchair and crutches as the hospital ones are universally awful, make sure he gets lots and lots of sleep, plenty of B vitamins and total calm (stress definitely pushed me over the edge). My experience is that this is completely untreatable and the books say that too but what do I know? I live alone with no carer - I sense that this is less true for others. One thing: it gets hard to communicate after a while. My beloved brother bought me a Kindle Fire, which is very clever as it has the best intelligent texting I have ever experienced. I may seem to be typing. I'm not. I am using one index finger to type one letter out of every ten. Invaluable. I can only hope that you and George can make something of this. It's not very easy, to say the least, but you will find that many members of this "club" live for quite a while after diagnosis. I'm just one of the unfortunate ones. One thing I do know - opiate painkillers don't seem to work well or at all with neurological disorders so do ask for appropriate neuropathic remedies like gamma globulin. For me, at least, that cut screaming pain to something tolerable in a fortnight. God bless both of you. Tim

  • Hi there thanks for your reply , you have struggled alone without a carer to support you , have you had a care plan set up where people come to your home . Do you suffer pain in the legs , George has had that prob last three years in the archilles region , never knew whether is a side effect of psp .

    Such a lot to learn , George has been taking Q10 supplement also tumeric which I make into a drink , George hates it but takes it .

    Never realised there were so many sufferer of this horrible disease , they say it's rare , out of every 100 diagnosed with parko 4 have psp ! Thanks again for your reply

    Chris

  • Tim how do you manage to look after yourself? How about hot meals? Must be really hard by yourself. Yvonne

  • Awfully badly. I used to be a cordon bleu chef and am now reduced to Pot Noodles and the like. There is a very good organic ready made meal provider called Ilumi which I adore (lots of eastern food, two minutes in the microwave, great flavour) but it's terribly expensive, unfortunately. I am just biding my time now. I try to do a couple of circuits of my ironically large kitchen on my crutches once a day and sleep as much as possible (that helps more than anything) and to keep in touch with the outside world - I went AWOL for a couple of months and almost went mad while my family went crazier.

    God bless you both, life wasn't meant to be like this.

    Love,

    Tim

  • Tim just looked up ilumi looks delicious, saying you can buy it in Asda, will give it a try. Yvonne

  • Hi Tim ,

    Just thought I'd drop you a line to say I have found this site very helpful , and the more I read from other carers like myself realise that the docs may have diagnosed G correctly , I sometimes doubted them .

    Interesting to read you r a cordon Bleu chef , did you have your own restaurant at all . What do you think of all these different cooking shows on tv? There is such a lot of cooking shows on oz tv , have only watched one .. My kitchen rules , just about did my head in .! Trouble is the viewer doesn't get to c the full prep and cooking of these meals , so wouldn't learn anything from them . Tho always show the disasters !!

    My two daughters are both ex chefs . Ex because one daughter separated from her hubby that is also a chef , and met the new man in her life who is a stone mason , so instead of mixing cake she mixes cement , works with her man full time , doing all sorts of wonderful creations .

    Our eldest daughter left chefing , her husband joined police force , they had to change address , so she changed her job as well , and works in retail nine till five weekdays only . She says no stress , no ordering no cooking outside home .

    I worked in childcare as a cook for 21 years till I retired in 2013 , loved the job and the children , but was ready to retire got tired . Wouldn't have the time now !!

    Take care drop a line now and again , and just like you said I received lots of feed back especially from England

    Chris ๐ŸŒˆ

  • Hi Chris, it doesn't feel right to say 'welcome' to PSP because if everything was all right you would't be on this site, never the less 'welcome'. My late wife was also misdiagnosed with Parkinsons to start with but we saw some specialists, here in the UK, and she got lots of support - sadly there is no cure - and she died in June this year, greatly missed.

    John

  • Hi John

    Sorry to hear you lost your wife to this illness ,

    We're from the uk originally Nottingham lass , my hubby is polish born to an English mother , he was born and raised in Poland up to the age of 10 , the family then returned to England . I met George when I was 16 , been together ever since , 67 years married on 19th October .

    Chris X

  • 67 Wow! Congratulations. ๐Ÿท๐Ÿ’

    X

  • Hey NannaB

    I just retread my last reply to you was suppose to read married 47 years not 67 , goodness tho it feels like it !!

    Ha ha Chris ๐Ÿ˜œ

  • Ha ha! I realised that when you sent your later post saying you visit George's mum and go to lunch with your ex workmates during their lunch break. I was going to ask you what you were all taking to keep you so active, being at least 83 if you married at 16. I want some, whatever it is.

    X

  • Hi john , was suppose to read that I have been married 47 yrs this year not 67 !! Whew

    Chris X

  • Hi Chris, welcome to the site, you are definitely on the right track. My husband was diagnosed in 2010. He is 68 now. We live in the UK.

    It's good you have supportive daughters. I hope they get to stay with you sometimes to give you practical support. Folk we know who "don't get the gist" are rarely in contact now but that is their problem, not ours. I think some stay away because they can't cope with seeing how a loving, lively, caring man has changed into someone who no longer looks directly at them, doesn't speak to them and has to have everything done for him. Although I have told them he is still the same man inside, they can't deal with it.

    Despite everything, life still goes on, in a different way and we still get out and about several times a week, making the most of the good weather in case snow arrives, when we will have to hibernate. Wheelchairs aren't much good in the snow.

    Nanna B

    X

  • Hi Nanna B

    Thanks for your welcome , George and I get out for coffee twice a week , plus visiting his mum and his siblings on occasion , so not stuck inside too much . I worked as a cook for childcare centre for 21 yrs before retiring , I keep in touch with about 8 of my ex work mates .We meet every Tuesday Thursday just for an hour whilst it their lunch break , they every 6weeks for girls luncheon . We used to explore different places to go cafes etc , but we a noisy lot and always notice that other customers don't stay around too long when we girls r there !! So we take it in turns to go each other's house , all take a plate of goodies to share , plus a bag of maltesers is placed in middle of table . We known as "the old teasers "

    Life has to go on and we can still smile and laugh .

    Chris ๐Ÿ˜€

  • I'm so pleased you get out as much as you can. I'd love to be a fly on the wall when you meet up with the "girls". I do the same with my ex collegues during school holidays, again every 6 weeks or so. Unfortunately I can't meet in their lunch break as they are always supervising the students then. There is nothing like a good laugh to enable you to cope better. As well as my/our daytime activities, I get out 2 evenings a month, meeting with different groups of people and sometimes our ribs hurt with laughter. It make life more interesting for us when we are alone as well as I have something to talk to my darling about. I think I'll steal your malteser idea when I go to my ladies wine appreciation group. My darling is going to the Hospice for 5 hours today so I'm spending the time with someone we lived opposite when we first married 43 years ago. More laughter and excersise when we walk her lively Labrador.

    I hope you both have a good day.

    X

  • I am so glad you have found this site. Always help and advice freely given and extremely helpful. I have found many tips and had answers to any queriesy I may have. Try and take any help offered and if you need understanding and answers, believe me we have all had the same problems and feelings. Welcome and hope you find a lot of useful information. Pauline x

  • Thanks Pauline ,

    We now have a care plan for George , so physio come to show him excercise , speech therapist , case worker organised shower rails in shore , a bed post to help George pull himself out of bed . He off to dentist this afternoon , not impressed !!

    Chris X

  • Hi Chris welcome to the dystopia that is the world of PSP. This site is full of good advise and help in that you and your husband are not alone. I am in Wales UK but M was a nurse in NSW in mid 1970's and as a family we had 2.5 yrs in Canberra in 1990 lots of happy memories and photos which though dated M likes to look at. So we knew NE Victoria though probably changed a lot since. keep corresponding with the site it is one place where you can rant about this cruel condition called PSP.

    Best wishes Tim

  • If your husband has PSP, then you are definitely on the right track, joining our site! We are all Carers, like myself or sufferers of this evil disease!

    I am in the UK, so don't know about support group in Oz, but I'm sure, someone will reply to you, advising you!

    Get hubby to exercise classes ASAP. S does some multi directional ones, designed for people with Parkingsons. They are brilliant. I certainly know, when he hasn't done them for a while.

    We all use this site to share the Good, the Bad and the Ugly! Nothing you write, will be a shock to us! Nobody will judge, all far too busy feeling exactly the same!!!! Everyone hates this disease with a vengeance, for what it is doing to our loved ones. We hate the fact, we are caring for our husbands, when we should be enjoying our retirement, but when you love someone, what can you do?????

    The main piece of advice I can pass on, is stay as positive as possible. Concentrate on what you husband CAN do, not what he can't! It's one day at a time, only that way will you have some sort of peace!

    Lots of love

    Heady

  • Hi Chris,

    Just a short note to welcome you to this group of lovely people, I am not well at all at the moment so I will write a better post to you when I'm back to normal....

    Love Pat xx

  • Hi Pat. Sending you a get well soon hug. I hope it's not too long before you feel well again.

    Take care.

    X ๐Ÿ’

  • Thank you NannaB! Still feeling really ill and sorry for myself, gone are the days when I had Keith to look after me and I could just sleep it off!๐Ÿ˜ฅ

    Love....Pat xx

  • Hi Pat, sorry to hear you are feeling grotty! It really is the end, when we feel ill. I have just about got over my cold, it's taken a good month, everything takes so much longer to shift these days! I know age, has a tiny part to play, but stress is the biggest culprit!!!

    A few vodka's would probably help!!!! It is Friday!

    Lots of love

    Heady

  • Hi Heady,

    I agree stress definitely doesn't help at all but I would love for someone to take care of me at the moment, I'm not sleeping well for coughing, makes me wonder whether to go back on the cigs and get rid of my ecigarette! But of course I won't I'm too proud of myself for getting this far with it, 8 weeks without smoking is nothing short of a miracle for me and I'm determined not to go back on them!

    Hope everything is going as well as possible for you both, Keith's brother told me this week that Keith had told him his neurologist has told him he will be ok in 2 years time๐Ÿ˜” It's so awful isn't it, I often wonder how on earth we manage to cope but somehow we do!

    Lots of love to you and S

    Pat....xx

  • Eight weeks without a cigarette!!!!! Wow, I am very impressed, especially as iKNOW what your life is like. Pat, why aren't you Prime Minster, or something???.?.? (I am a non smoker!)

    Isn't it sad, what our husbands think? I am sure, mine thinks he will be well soon, able to go out climbing, hiking, running his business again, even driving! I do hope your neurologist didn't tell Keith that, unless, they have found the holy grail!

    Mine has just got upset with me, because I'm shouting yet again. Even managed to tell me! So I well and truly over stepped the line. I only asked him to keep still, while I dressed him, after a toilet visit. Feeling guilty, but I bet he wouldn't be even tempered, if it was the other way around. I would already be living in a home some where! Got my angry shirt on at the moment!!! Must be wine time!

    Lots of love

    Heady

  • Thanks Heady,

    I think Keith must have been dreaming bless him, it's ages ago when we last saw his neurologist and he definitely didn't say anything like that, I was there all the time! I think he's just grabbing at straws which is understandable I suppose! xx

  • Hi pat well done for going 8 weeks without smoking. Keep it up the cough will get better just give it time.

    Janexx

  • Thanks Jane! xx

  • Hey! Congratulations! Good for you!!! I quit a few times before it finally stuck, and I'm very glad to be free of it. It IS something for you to be especially proud of; you've quit under very difficult circumstances - like the worst! I'm really impressed. Keep it up!

    I'm not giving up the drink, though.

    Love, Ec

  • Now there's absolutely no chance of me giving up my vodka and I know I couldn't have stopped smoking without my ecigarette (or magic machine as I call it!)

    I'm actually enjoying it more because I don't have to keep sneaking off outside with my umbrella and freezing to death, I can use it anywhere and nobody would know! ๐Ÿ˜‡ xx

  • I've never been a smoker but I wish they would invent echocolate and ebiscuits. I want to be able to get into one of the dresses hanging untouched in my wardrobe for the last 4 years, having put back the 2 1/2 stone I lost in 2011. There will be 10 here for Christmas lunch and I want to wear my sexy blue number......fat chance!

    X

  • There are things that PSP make us do, things we can't do, because of ##########PSP, but even the thought, of NOT enjoying my glass or three of wine tonight, well, even PSP knows its boundaries!!!!

    Lots of love

    Heady

  • Hi ladies hope you are all enjoying your well earned drinks, and Pat hope you are feeling better, and well done for giving up smoking, I have always been a non smoker. Love to you all Yvonne xxxxxxx

  • Hello Chris

    Sorry we have to welcome you to this site. Mind you the information you will get on here is second to none and always gladly given. Someone usually has an answer to queries. My hubby was diagnosed a year ago after 18 months of tests and true to form was diagnosed with Dementia and Parkinson's first, that is until one bright young Neurologist decided to send him for a DAT scan - this showed immediately that it was PSP as it showed the 'hummingbird' shape in the middle front area of the brain - apparently that makes the diagnosis certain. There are lots of aids for all sorts of problems that can be encountered so yell if you need help. Unfortunately my hubby has gone downhill quite quickly and noticeably in the last month. He is still able to walk with his walker but around the flat does have stumbles and minor falls - it is apparent to me that when he changes direction (e.g. walking around the sofa to sit) if he uses the foot for that direction he does not have much trouble, problems occur when he turns left using his right foot as it means he is crossing his legs - our Neuro has told him that is he keeps the core of his body in a central position he will carry on better, although it is thought he will be wheelchair bound in about 18 months. He had trouble drinking and eating but, as I said earlier, there are positives I have put in place and am happy to say this has totally turned food and drink around. He wears travel patches for helping with excess saliva too.

    As said in other posts it is best to do what and encourage what he can do, I tried to help him try to do what was difficult and in the end it only suffices to make him angry with himself and me stressed out.

    The major point I think I am learning is that you HAVE to look after yourself - how will hubby cope if you cannot be there for him. Being that you are in Australia I can't help with what services you are entitled to but if there is a chance of a sitting service, where you get some hours off each week please take it - it may make you feel guilty at first but you will come to appreciate just those few hours off.

    All the best and yell anytime xx

  • Hi Gilljan ,

    I'm happy to have joined this site all you lovely people out there so helpful .

    Let me tell you a bit about hubby , his symptoms , had a couple of falls , able to walk unaided at present , slurry speech , stutters on occasion , slow movements , and feeling of loss of strength in mainly right side , and told me the other day his left side feels the same , are these similar to how your hubby started with PSP , and how long was it before he became unable to walk unaided . I feel my hubby started ( tho diagnosed original with parko ) about 18 months before parko diagnosis . He used to thrash around in bed to the extent I had to sleep in another room for fear of being hit , he yells in his sleep and on occasion has fallen out of bed , tho that is not as bad now . He gets confused and so sensitive , where has my man gone .

    Chris xx

  • Hi Chris

    Malc was finally diagnosed about 14 months after I noticed something wasn't right. Initially had a battle with his GP who tried to put his symptons down to getting older - that's ok if 65 were considered old these days!! Luckily a female GP agreed with me and sent him to a Neurologist. It still took 10 months of tests before the correct diagnosis. At this time Malc had been falling down the stairs when coming up to our apartment. He was walking unaided but at times quite slowly and deliberately placing his feet. Mind lots of the roads around our neck of the woods then were hills and we found that he was having difficulty seeing the incline correctly. He didn't get a walker until Feb of this year and it was more to be steady and safe when going out - it prevented falls. He sometimes only takes his stick with him even now. In the past month I have noticed quite a decline - he is unsteady within the flat at times - especially if turning corners - if he uses the foot for the direction he wants to go all is fine but he often forgets this and will put the wrong foot forward causing a wobble!

    He has a weakness in his right wrist and left knee, this makes it difficult for him to cut his food and also means that he is apt to take tiny steps with his left foot. He is better at speech than he thinks but on the odd bad day he can get very frustrated with himself and that only exasperates things.

    Remember though that no two people with PSP are considered to be the same and I have found it best to deal with each difficulty as it arises. The main need for us was to move to a safer home, so 16 months ago we moved to a retirement village where I have the comfort of emergency pull cords in each room and a manager on site weekdays. If you want any other info I am happy to pass on my experiences of course, although you may well need to do somethings differently for you and your husbands needs.

    The one area I am bad at is asking for help and as I am alone with no family to assist me I am having to try and come to terms with turning this around and get help as I realise if I keep going I am going to be ill and then where would Malc be!!

  • Hi Gilljan

    Thanks for your last info , do you not recieve help from outside like community Heath places ? Do u live in UK ,

    Georges neurologist last time we saw him in May asked if we had a care plan set up ( I knew we would need one , but talking to hubby wasn't going to b easy ) so he emailed our local doc and he had one set up within a week . So we have a case worker that set up physio , speech , and safety officer for shower rails and any rails we may need outside .

    George feels WE don't need this help , but because the doc organised it he okay with it now .

    Prob getting out the car , especially the passenger side cause his right side doesn't want to move as quickly , he has to lift his right foot up to move it out . Physio comes again Monday so will chat with her about that ( he never had so many women caring for him ) sorry ranting on about us , what I was getting at , do you have that kind of set up where you are , is it something you have to ask your local med centre about ? Ask your doc and don't be shy to ask , everyone deserves some help in life more so when you struggling on your own .

    Chris ๐ŸŒป๐ŸŒป

  • Hi Chris, Malc went to speech therapy but they decided that the only problem was that his speech is slow so they discharged him. Same with physio, after 4 visits they also dishcarged him with a few exercises, on of which was to march on the spot - I ask you!! that is the surest way to ensure the falls - they much know that PSP is a balance risk. We had an assessment of him back in Feb and a few alterations to the flat, however his needs have changed and we are waiting for a re-assessment (4-6 wks waiting time due to demand!!) I have also been given a further 3 hours sitting service, but the agencies also have a waiting list so goodness knows when the extra will be available. Recently a Compass Care Advisor came to see me - they deal with MY needs and she was a godsend, she actually had ideas and definite answers to just about everything. I am now persuing direct payment to get my own sitter and have even found a daycentre in Taunton town centre who will willingly have Malc there at least one day a week. Yipee they have a lady goes there with PSP so they DO understand his limitations and are sure they can help him, they have a hydro pool, small gym, games room, tv with videos etc and will take the patients to the local park and even shopping, so Malc is chuffed he can choose xmas presents this year. Just have to wait for the assessment to get someone to help with his showers, its over the bath and I just can't manage to get him in and out now.

  • Hi Gilljan,

    It's hard work trying to organise help for your loved one and yourself too .

    I've been fortunate that we had a care plan set up for George . Tomorrow continence nurse coming to the house to show George how to use catheter . He has enlarged prostrate always dashing off to loo . Urologist says no meds cause can cause the urine flow to stop which creates another prob . No operation cause he can become incontinent , so the catheter is only option , the man is not impressed . ( I don't blame him) catheter to b used before he goes to bed to help empty his bladder completely so less getting up in night , he doesn't have to sleep with it on . It's his birthday tomorrow not much of a present !! Otherwise pretty stable at moment

    Chris X

  • Dear Chris,

    So sorry to hear about your hubby, but this is exactly how my dad started and that's where he was about three years before he got to the final stages. A shuffling walk, stuttering or "stuck" speech, weakness in his left hand and leg and all left side; his right side did not follow suit till about a year and a half later. Also he did also down to the point of doing everything in slow motion. Those were the first true signs and very typical of PSP from what I know.

    I don't think I have ever posted here before, but this website continues to be a great resource. My dad lost his battle 6 weeks ago exactly today, and I want to help others so that his suffering was not in vain. One day at a time , with this cruel and i relentless disease.

  • Hi imli

    Sorry to hear your dad has passed , what the disease does to our loved ones is horrible , sometimes think to my self be easier th cope if he went suddenly of heart attack rather than he go through all this rot , then I feel bad for having those thoughts . I suppose us humans go through this anger frustration that we feel directed at our loved ones , then feel absolutely drained .

    Remember all the lovely times you've had with your dad and hold onto those happier times

    Chris๐Ÿ˜˜

  • Hi Chris

    Nearly Like you my husband first had prostate cancer at 62, then within 2 years diagnosed with Parkinson's and within 12 months medics noticed changes so he was diagnosed with PSP. He has lost all his peripheral vision, focus in both eyes different, can't wash or dress himself. Is incontinent but I'm managing that quite well, even though I say so myself, buy pants and NHS supply inserts, very staggery and falls backwards periodically but thank God he's never banged his head since he did 2 years ago. He chokes on and off so lots of smoothies, a Ninja 1000 auto IQ is great, but very messy when eating, doorways are a problem so takes ages to walk through them, and apart from all that we're great, sorry Irish humour. We live in London near wembley stadium and services quite good as long as I stand firm with hubbys ever changing needs. Just waiting to see if we get funding for an echo voice at the moment, hubbys voice very low now so it might help him to participate more In conversations with friends and family. I still drag him in and out whenever I can if I have help. sorry for rambling on but we do laugh with married 46 year old humour, so sanity still rears its head bus and then. Keep your humour and smile In the midst of such sadness. Take care of yourself always. Marie

  • Hi Marie thanks for your info , my hubby nowhere near your hubby sypmtoms , but am told everyone sypmtoms different ,is that so ?

    He still has good vision , tho he does have on occasion a complete blank face (no lights on )

    I won't allow him to drive now because he falls asleep so easily , sometimes I think he not asleep just has droopy eye lids . So I take on all the driving which I find hard , our daughters live 5hrs away b, both 5hrs from each other , like a triangle . I tend to have a few stops on the way , which is good cause George needs to have a toilet stop quite a few times .

    It's a terrible journey isn't it (psp)

    We have a laugh too when he stutters his words out , George and I crack up ๐Ÿ˜€ At least his sense of humour is still around .

    Thank you Chris X

  • Hi Chris

    Yes blank face common, think that's what alerted me in the first place, and I've been driving there and back to Ireland, 13 hour day travelling, for about 4 years now, plus all the other driving, so much safer. Heavy eyelids are also a thing, it looks like they sleepy but they just can't hold their kids open, plus the head falling forward all the time, hey ho, keep smiling. Marie

  • Me again! Just had a thought reading where your daughters are. We can't visit our sons any more as C can't access their houses and with one, 3 and a half hours away, it's too long for C in his wheelchair in the car. This son comes here as often as he can but being a self employed owner of two restaurents, time is limited. What we do on occasions now is meet half way. We have found a zoo which is good for our grandson to visit, has level restaurents and disabled toilets. another son is only and hour and a half away and we see him every week but sometimes we also meet him at a garden centre where we eat together before returning home.

    X

  • Hi Nanna B

    Yes we have discussed meeting half way with our girls and their hubby and our grandkids . They all involved in sport so hard to get together as often but the odd weekend pops up so we catch up with them . Plus we do Skype which is great . Our youngest daughter has 4 children with partner , and she has done fundraising walks for psp , last one an organised walk through parkinsons Victoria , she raised $ 1450 , which she was so thrilled with cause she only asked for $500 to start with . Tomorrow there's a marathon in Melbourne , running for a cause , so she and hubby and children are doing a three k walk there , I'm unable to go there myself tomorrow , so I am doing a honouy walk with a couple of girls that I used to work with , just 3 k . Then we stop off for a cuppa before going home . Our eldest daughter separated now and raising three boys can't make it but she phones regularly her dad .

    Chris X

  • It sounds as if you are all going to have a great weekend. I like the sound of a walk and a cuppa with friends. Our youngest son and his wife raised money for the PSPA by walking across the bridges over the river Thames in London. They walked across a bridge, along the embankment and across the next bridge, zig zagging their way up the river. They walked for hours but raised a lot of money. It is more difficult to get together when the grandchildren get older isn't it? We saw a lot of our middle son's boys when they were younger but now at nearly 6 and nearly 9, every weekend is busy for them, football club, Street dance classes and birthday parties.

    Have fun and laughter on your walk and enjoy the cuppa.

    X

  • Welcome Chrism2. I have only joined recently, but I am very glad that I found this site. Sometimes, it is hard to talk to relatives about problems because they are hurting too. Here you can rant, ask questions , express worries and fears and there is always a rush of support from lovely people who fully understand our problems.

    Best wishes. X

  • Hi robbo , I wish I had joined this site earlier in the year , so many questions I need to ask , you all such a great compassionate lot , I'm overwhelmed by it all

    Thank you Chris X

  • Ask away, Chris! This is a fine group of know-it-alls, always pleased to share our experiences! No, really, there is a lot of good information on this site. Don't neglect to use the search feature. Most of the basic questions have been asked and answered more than once. If you look up Strelley in past posts, his replies are full of great information. He hasn't been around much since his wife, sadly, died, but he was a medical researcher and was very good about keeping us well informed.

  • Hey, speak for your self, know it alls, indeed!!!

    What else keeps us going, but trying to help others in our situation. Of course we are know-it-alls, who else does, but us??????? Medical profession? I don't think so!

    Sorry, feeling very angry tonight, trying and failing miserably to be funny!!!

    Lots of love

    Heady

  • Well, we Do know it all - at least, having the benefit of all the generous advice and accumulated experience so generously shared on this site, I know a lot more than I could have learned in any other way! I really don't know how I could have survived so long without you all - not least you, Heady, dear.

    What's making you angry tonight? I know I have been bouncing from such emotional extremes - so furious and impatient Tuesday and so much calmer today. I had some sleep, and that makes all the difference.

    And we got our wonderful stairlift today. I've been trying fecklessly to get one for 2 years. And our VA just went and did it for us. I am so grateful.

    Anyway - got any good wine in the cupboard, Heady?

    Pour a glass and pour out your frustration. What's going on? Do tell!

  • Hi, wine didn't help tonight! S got very upset, because I shouted at him (again!). Even managed to tell me, he was so upset!!! All because I asked him to keep still, while I dressed him!!! Is that so hard????? Had an assessment for counselling this morning, don't think there's any doubt, I need it!!!

    Our wonderful care service over here, is getting me down. Yes, I have been awarded this fantastic CHC funding, but, as yet, 10 days later,not a word about giving the help they are going to fund!!!

    I am tired, I can't sleep, hence the rambling! Oh well, must at least try again!

    Hope you enjoy your chair!

    Lots of love

    Heady

  • Oh, Heady, I do sympathize! Sometimes I feel as if I am wrestling a half-set statue. Why can't he just BEND? When he does, everything is easy, but when he doesn't, we fall and my arms scream. And then I rant. As if he can help it.

    We were told three weeks ago that we were eligible for 8 hours a week of some kind of home help. Nice to be eligible, but no actual word about service. I suppose help is hard to find for the agencies, too. Let's not say " good" help.

    But here we are, air in our lungs, men we love, work to do. We shall persevere, right? And have a drink. And watch Tv late at night.

    There was a TED talk tonight on our radio, public radio here, MPBN, if you can stream it, about the secret of happiness. He and I both listened to it, and felt stronger. If you can't find it, and if you'd like me to, I will send you a link.

    Hang on, Heady. We love you. Goodnight. Easterncedar

  • Hi chris, sorry you have to join this site like so many of us lovely people, but the upside is I couldnt of coped without it so helpful everyone is on here and we are all on the same journey even though I lost my beautful mum 16 months ago I still come on here everyevening sending big hugs your way xx

  • Hugs to you, blackcushion. Glad you are still in the circle. How are you doing? Ec

  • Hi chris, still struggling without my mum she was a great mum and put me and my three brothers before herself me and my youngest brother were so close to mum. Its such a cruel disease but we were lucky enough to look after mum at her home right till the end and I was able to be with mum on her final journey till the very end. Sending hugs chris as I know its so hard. Xx

  • Hello,Chris.

    Welcome. I wrote a long post this morning but I don't know where its gone !

    My husband was diagnosed oct. 2013 just before his 80th birthday. He had been trying to find out for about 6 years, maybe more. Its very gradual, but started with balance problems. Then confusion,difficulty finding his way around, driving problems etc. As soon as we saw a neurologist he diagnosed it. I wasn't sure it was better to know as there was no hope !

    However, we just have to manage, don't we ?

    Here we can shout and share knowledge and find humour and beauty [ see Georgepa]

    love, Jean x

  • Hi Jean

    Nice to hear from you , had so many replies from folks don't know where to start , but one thing for sure you all sound like a great bunch , like an extended family

    Chris X

  • I am terribly sorry. It is miserable. I am in final stage. If there is anything I can do please contact me

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