Hello All of you

Hi, until now the only thing I have posted has had stamps. Birds tweet and I have never photographed my dinner . So, this is a first, as is PSP. My wife, Bugs, has had problems of double vision, falls, choking/swallowing for over 5 years and about 18 months ago her speech became more mumbled/quiet. This was about the same time as she was finally referred from the eye hospital to a neurologist. Various tests, assumed conditions ruled out and finally a DaT scan indicated PSP. This was finally confirmed by the Parkinson's Nurse specialist. I had been researching before this and had feared that this could be PSP so the actual diagnosis did not come as too much of a shock. I was in touch with the PSPA early on and got a lot of useful information, including a booklet for the GP who hadn't much of a clue. Following the diagnosis a lot was put in place with physio, SaLT,OT and latterly the local hospice Palliative care Team. I also negotiated the path to claiming AA and then Carers. We even got a Blue Badge. Plain sailing.

I then came across this forum and I find it hard to read a lot of the posts without tears. I am so angry at my own stupidity. No one has said anything about the way this illness progresses. I read the info. about pneumonia being the most common end but there is nothing much said about the stages between now and then. I am much wiser now so thank you all who have shared. The most annoying thing is that I had asked about the progression of this and Advanced Care planning but was fobbed off as it was to soon and Bugs would probably not take it in. So if not now, when can such a discussion take place as her understanding is reducing very quickly. I thought the whole idea was that the patient made choices.

As to where we are I don't know. The nurse said they measure Parkinsons on a scale 1-5 and comparatively, Bugs is about 3. How can progression be judged?

At the moment, Bugs walks with a stick but has frequent falls. She does not do much apart from sit in a chair and watch endless re-runs of flog It. She has stopped communicating much -very abrupt most of the time and exhibits very obsessive behaviour. The swallowing/choking is quite bad but mainly on saliva and is worse at night. The throat clearing can be heard out in the garden. I have to sort her clothes otherwise the same things are worn time after time and as for asking her not to do things which are inevitably going to end up with breakages/burns/ water over the kitchen floor - well I may as well talk to the cat.

I guess I am not really asking anything specific like many of the other thing I have read, just making myself known and maybe someone will have some advice. Thanks for reading.

20 Replies

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  • Welcome Tokki but I'm sorry you had to join us. When my husband was first diagnosed we went on the net and read all we could about this awful disease. After that, we got the house sorted with a downstairs wet room, hand rails,high toilet seat etc but never dwelt on what was to be. I found out what C wanted to happen when he could no longer do things and then we concentrated on making every day special and created new memories. We did things we always said we would do when we retired. I am so pleased we did as 5 and a half years later he sleeps most of the day and rarely responds to anything. It means he doesn't fall any more and I no longer have to mend breakages, which were many. I didn't worry too much about stages as everyone is different. As things hit us, we deal with it. I still don't worry about the future, I don't see any point really as I can't do anything to change it. I think we just have to find our own way to deal with things. I pray, and frequently shout at God and He always makes me feel able to cope after a holy rant but I know others think differently. We all have to find our own way.

    I love your wife's "name". I had several rabbits called Bugs throughout my childhood and loved them all.

    I've never tweeted but have to admit I photographed a restaurant meal so I could show my chef son what others served.

    Keep posting.

    X

  • "As things hit us, we deal with it."--- Love it! love it! That sums us up in a nutshell! xx

  • Hi Tokki. I too am new to this forum. My mother of 66 years old was diagnosed with this disease last year in February. I started noticing changes with her back in 2013. For my mother, her progression was very fast. I never in a million years thought she would end up like she is now. My mother can no longer walk, stand, talk, eat, swallow. She has a peg tube in her stomach for nutrition. She is unable to communicate anymore. She is so thin and frail. From the start of this disease, she has lost a good 100 lbs. My mother has a lot of mucous production. She has a difficult time clearing her throat so it gets stuck and makes her very anxious. She is under hospice care now. This started in October of last year. Honestly, it's the best decision we could have done for her. All we can do is make her comfortable. At this point, she is at the end of her disease. My mother had a difficult time accepting what was happening to her. She was an extremely independent woman who was slowly losing her dependence. My mother has lived with us for 9 years. I have been experiencing this disease with her. My mother went from walking normal, to dragging her left foot, to having an unsteady gait, to having to hold on to walls, to using a walker, to using a wheelchair, to now being completely bedridden. She went from loving to eat, she started to experience difficulty with swallowing certain foods, she then would choke on thin fluids, then it eventually got to a point where she couldn't chew her food and was unable to swallow it. She didn't have the dexterity to place the food in her mouth. All of this happened last year. She had a PEG tube placed in May of 2015. Her communication went from talking, to being unable to remember certain words, to slurring her words as if she were drunk, to being unable to understand what she was saying, she then started to write out her thoughts and that quickly became difficult to read because she could not keep her hand steady and she could not remember how to write certain words. We tried to use a Dynovox machine (looks like an I pad) that would communicate for her but she could not focus on the squares and could not steady her finger to press the object on the screen; so it was useless. My mother started to fall and we knew she could no longer be by herself. We were able to hire someone to take care of her during the day while we were at work. This woman has been a Godsend! Last year in late September, my mother started to vomit from all of the phlegm that would get stuck in her throat. This was the last time she could actually communicate by using her hands (thumbs up meant yes and thumbs down meant no). After this she declined to where she is now. She was able to agree to Hospice Care on her own. It has been difficult to see her go through these different stages. I am grateful that I am able to be here for her during this difficult time of her life. She was a wonderful mother. I am blessed to have my health and to be able to care for her. This has brought my family so much closer. My two girls (10yrs and 14yrs) are so compassionate and my husband has been great. On a personal note, I am a nurse and this experience has made me 100% more sympathetic to my patient's needs. So, my suggestions to you are to talk about the future with your wife and family. Prepare for assistance (nursing, occupational therapy, speech therapy). Obtain assistive devices like walkers, wheelchairs, shower chairs. Get yourself a suction machine for her saliva. I ordered one on-line for her. I'm from the US and am not familiar with what is available to you but through this forum maybe you can get some direction from the others. This is a great venue for information. Something I wish I had discovered much sooner. Remember, it's okay to get frustrated but never forget that your wife feels 100% worse going through this terrible disease. God bless you! I hope this information helps you.

  • I am trying to wean myself off this site as my partner passed away on 20 January, but then I read posts like yours and feel I want to respond. Although there is actually nothing I can say that will help. Each PSP sufferer follows a different path and has different symptoms, often in a very different order. That is the hardest part of PSP: there is no normal progression. My guy started falling in July 2010, was diagnosed in March 2013 and died two and a half weeks ago sitting in his arm chair by the fire. We live in Turkey and I did all his caring until last September when my daughter moved out to help. He went to private day care two days per week from April last year so I had some time for myself. Although that time quickly got taken up with doing all the stuff I couldn't get done when he was here. We were blessed with a wonderful neurologist whom we could see at any time for very little cost. He was a technophobe so, when first diagnosed, I did the on-line research and read out stuff for him. On the US curepsp site I found a 'progression questionnaire' designed for doctors which I used in summer of 2014. It gave him eighteen months to live which turned out to be almost spot on. However, as a retired mathematician, I do not set much store by that result as I know how much 'guesstimating' was involved in completing the questionnaire. Ironic that the medical profession have produced such a questionnaire when we all know from personal experience that there is no normal progression to PSP. At the time I did the questionnaire he was still walking with a stick and was not yet incontinent. Chris never became bedridden, could eat and speak until the end. He was 68 when he died. So all you can do is make each day as meaningful as possible alongside meeting basic care needs. Good luck.

  • Welcome you are among friends ,but sorry you had to find us.

    PSP is not really a cross country race more of a rollercoaster ride so no measuring progress too well,I suppose one gauge of PSP progression in my own husband is that he weighed 14 stone before and 8 stone now but he still surprises us all on days.He went through a period of watching pre watched programmes but now he only watches about an hour maybe 2 a day focus problems make it hard work.As well as this forum is the PSPA who have a helpline 9to 5 and 7 to 9tel 03000110122

    Good Luck Px

  • Welcome to this site but also sorry that you needed to. It sounds like you have been struggling along the PSP road without early diagnosis and guidance. I have found this site such a godsend as it tells it 'warts and all' and although I am finding it a scary road to travel at least I have some I site into the disease and nothing comes as a shock. My husband Ben was diagnosed 2014 but luckily the neurologist suspected PSP on our first visit, this was after 18 months of the GP sending him for a variety of tests to account for his 'dizziness' the thing I found the most difficult was getting on the radar of the the various services. Ben is a reluctant patient and won't ask for help do I have to do all the pushing and he often refuses the help on hand bad so it can make things difficult. I am getting him to accept his situation bit by bit but it is wearing. As everyone else says PSP is an erratic disease and it seems nobody follows exactly the same path. I hope you find this site and all the PSPA information helpful and supportive. Kate x

  • When we got the diagnosis I tried really hard to find out what was actually going to happen. All the professionals were evasive. I had to find it here. I think its very patronising of them to assume we couldn't cope with the truth. I know some people don't want to know but if they are asked directly, why not ?

    Chris goes every Monday to the hospice and they helped with Advance Care Plan while Chris was able to join in.

    I dread the next stage but can manage at present . This site supports us when we reach panic.

    love, Jean x

  • Hi, welcome to the best site in the world! Sorry you had to join us though.

    Nobody has ever sat down with us and explained PSP, S's consultant told us to Google it!!! Our GP has never heard of the disease and unfortunately can't read or knows about Google!!! Everything I know about PSP, I have learnt from this site. Like you, I have done my research, but nobody tells you about the in between times.

    My husband can barely walk now, can't communicate and swallowing is getting to be a problem. Life is very hard and extremely tiring!

    The main point I want to put to you is, don't be frightened of asking for help! It is NOT failing, admitting you can't cope at times. Looking after your wife is going to be 24/7 job! NOBODY can do that. We all try and it always ends in tears. I was horrified, when it was first suggested that someone came in and showered S, now they do it five days a week. Sending him off to a day centre at the local hospice, was terrible, but he loves it there! I have crashed a few times, thankfully, I have a wonderful daughter to come and bale me out. But this last time, I realised if I didn't get a proper break, I would not be able to carry on. So on Monday S is off to spend a week at a nursing home. You are probably thinking, never! I did once. But now, it's either S goes for respite, part time, or full time!!!

    You are the most important person in your wife's life. If you want to be able to look after her for as long as you are able, then you are going to have to look after yourself! Which means, getting lots of rest, having time off, even just for a couple of hours. We all need to breath and take stock. There is no magic person looking down, to tell you when you need a break. Its that big brave person inside, that has to admit that! It is extremely hard, meet any Carer and you will see the scars to prove it!!!

    Respite is not a rude word, it's the only thing that will help you and you wife on this journey with PSP!!!

    Sending you lot of love and big hug.

    Lots of love

    Heady

  • oiagree with wha t H ha s said

    Lol jill

    XXXX

    PSP PERSNON IN THE UK

  • Hi my wife past away on the 1st feb this year from psp and like most people with this terible illness swallowing became a problem food doing also into her lungs she suffers with chest and lung infections which turned into pneumonia and with her continually falling backwards and hurting herself and her determination to get up herself the brushing over her body and the pain she had broke my heart but she wouldn't give in I am glad now she is at peace and will love her for the rest of my life

  • So sorry to hear of your recent loss. How precious to have had such a loving relationship. I know the many memories from the past will help you in the future.

    Best wishes, take care of yourself.

    Jean x

  • Hi Tokki

    I am also new to the PSP family. My husband (68) was diagnosed with PD in 2012 and not until we met with our 7th neurologist, we finally they concluded that it was PSP. We have known that it was PSP since November 2015. His double/blurred vision is what confirmed it. It was a movement disorder neurology team in Temple, Texas (Baylor, Scott and White Hospital) that finally give us the devastating news. The main doctor gave us a brochure and basically told my husband to get his business and personal life in order. It was a very sad day and it has been many sad days ever since. My husband is the kindest, loving, energetic, generous and amazing man. I can't believe this is the card he has been dealt. I try and stay positive for him and I will never give up and my main goal is to help him feel better. He does have a lot of leg pain and that seems to slow him down the most. He still gets up independently and I drive him to the office everyday but he is only working about 3 hours a day and then he is back home resting and napping. I have him on a schedule for showers and I have to change out his clothes or he will wear the same thing for a week. Our visits to restaurants are limited to maybe one or two a week because the chairs hurt his leg and his coordination and vision make it difficult to keep things clean. When we do visit a restaurant, I always ask for a corner table and make sure that he faces the wall so that he is more comfortable eating with a little privacy. When we see friends out in public they are just in shock to see him. They know something is going on but they don't want to ask. Do you just say what it is? Or at times I just say PD because PSP is so much more complicated to explain. It is moving so fast! He has very quiet days and then he has days where he does feel like talking. He does try hard to know how my day was and is great at giving me advice about a situation. We have some good days and some very tough days. On a good day, we head to the beach or an outing but he can only handle about 3-4 hours. I am losing my husband little by little every single day. I remember all the reasons why I fell in love with him--all the adventures and the crazy things we would do and that brings me peace and sadness at the same time. It is hard to explain. I am a planner so I am always planning for what is coming and I have done some home remodeling to make it more comfortable and safe for him since 2012. I have had conversations with him about his care and how I will need to get someone to assist me with caring for him. I know I say we will keep him home because that is where he is most comfortable but we know this is going to get very difficult. We are in the process of preparing our legal documents for business and personal stuff--I just want this kind of stuff to be settle while he can still make those decisions. We have a lot more to go but we are facing fear in the face!

    This is such a horrible disease but I have decided not to give up because I know he would never give up on me.

    Something about posting a message makes be feel better.

    Hang in there Tokki and best of luck with Bugs.

    NSH

  • Hello, NSH

    I had a little cry , reading your post. All you have written could have been written by me a year ago, except that my husband was 79 when diagnosed.It is a dreadful disease and the grieving for each loss keeps coming. It is indeed crucial to plan ahead at the same time as relishing what you still have.

    I hope this site will be a help to you , as it has been to me.

    love, Jean x

  • Thanks Jean.

    It is so hard to talk about this with family and friends. They don't get it because they don't experience PSP daily. I appreciate your feedback and support. I have had some very sad days lately but never want him to see how PSP is breaking my heart. I can only imagine what he is feeling and thinking. One day at a time.

    Never giving up.

    NSH

  • Hi and thanks for your encouragement. I have adapted the house as far as I can at the moment but the next stage has to be the finances. We have no family and closest relatives are a couple of nephews so ensuring that Bugs is protected is now top priority. Unfortunately the clarity of decision making seems to be receding fast.

    T & B

  • Hi Tokki

    Yes, it all seems to be progressing at an accelerated speed! My list of things to do for this week are almost all PSP related! I agree with you keep Les protected is also my top priority.

    Keep in touch and thanks for responding.

    NSH

  • Hi NSH, you are right, we lose a part of our loved ones each day. That is very hard to understand and make sense of, we are all greiving for the person sat next to us, chucking food everywhere! the person, who is taking more and more of our time, to the point where you don't know who or what you are. Certainly not a wife anymore! You have to make sure your husband is protected, but your top priority is making sure you are fit, well and as rested as is humanly possible. YOU are the most important person, in helping your husband deal with PSP. It is not possible if you are tired and stressed. Unfortunately, a state we are all permanently in. Please, please make sure you get help now, do not wait for the day it becomes necessary. None of us admit we need help, until it's too late. You need time for yourself, away from PSP. I know that means away from your loved one, that's the cruelest part! But if you want to look after him for as long as possible, then make sure you take regular breaks.

    Lots of love

    Heady

  • Thank you Heady.

    It is strange that I feel so guilty when I even go exercise or have a volunteer board meeting because I worry about Les. I worry that he might fall or that he might become confused. For now I still work (full-time) all week but when I drop him off at his office in the morning, I know his brother is there with him and so are his employees. They understand the situation and they are all on board and help Les throughout the morning. His brother then spends lunch time with him and brings him home about noon (So grateful for his brother). During the after noon shift on Monday's and Thursday I have our housekeeper keep an eye on him but he is almost always just resting/sleeping. I am home about 4 or 5pm or earlier and then it is my turn. It is usually dinner time and tv time after that. I do manage to get my workouts in at 5:00am every morning. He is sleeping when I leave but it has been a routine for me for years so he is use to that and thank goodness he is very supportive. I cry when I run because that is when I am alone and have time to reflect and pray. Some mornings my run gets very emotional but other days I run for Les because I know he would love to be running with me. I do have to do a better job at asking for help. The funny thing about Les is that if I say I need to run an errand to the mall, I always invite him and he almost always says yes. He will even wait in the car until I am done. He does not want to miss out. I am grateful for that for now but do know that at some point those errands with me will become too difficult for both of us. Right now those errands are in a rush and that can be good either.

    Thank you Heady for your advise. I appreciate it and welcome it anytime.

    Un gran abrazo de gracias (a huge thank you hug),

    NSH

  • Welcome! I am very sorry for your troubles, but a trouble shared is a trouble halved, so they say. I am sure that you will find lots of support and help on this site, which will help you to support and understand what your loved one is going through. It will, I hope be of great support to you too. Hang on in there, we know what you are going through which is more than can be said about the so called specialists! x

  • Thank you Robbo1. So far I can tell that you all will be my "go to PSP peeps". You get it! Thanks for the support.

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