Just joined, scared about what's coming

[judycope]

My dad has PSP, he and mum are moving to be near me, he can still walk, eat and talk a bit. Looking for other families near me (Merseyside) for mutual help and support

[Zeberdee]

Sorry you have to join this site but welcome. Lots of information, advice and support from very friendly and caring people who will help you through some dark days even though we may not be near Merseyside. Jx

[JR61 in reply to Zeberdee]

Hi judycope, I am in a similar situation, dad can hardly speak and has poor swallow and mobility we are not in Merseyside exactly but I have attended a PSPA group at the Liner Hotel, which is next to Lime Street Station and is organised by a lady named Julia Bonner, her email is [e-mail] perhaps you could contact her for further information on future meetings? I’m scared too but knowing that you aren’t alone helps a little. JR61 x

[judycope in reply to JR61]

Thank you, I had previously been in touch with Julia but couldn't find her email again because I couldn't remember her name!

[JR61 in reply to judycope]

Glad I could help. Yes it’s a very lonely and frightening road. It feels like information overload with loads of different appointments and departments etc to juggle and the goal posts keep changing just when you think you’ve got your head round something. It’s a rollercoaster for the nerves for the carers and patients alike. One bit of advice I would give is get legal affairs in order ASAP as it is a minefield without such things as LPA and also try and get end of life wishes established whilst you can still communicate easily, I know this is an awful thing to think about at such a time my dad had an LPA for both finance and health and welfare but I have just had to have a meeting for end of life wishes and it was very difficult. JR61 x

[judycope in reply to JR61]

Good advice, all the finances sorted but I'm not sure about the end of life thoughts. I'll ask my mum.

[Julieandrog]

Hi and welcome

Bumpy and unpredictable journey ahead, there is lots of support out there but no one comes knocking! Once mum and dad have a GP get referrals to adult services, OT, District Nurses, Speech and Language services, Comm Physio and although hard to grasp now , your local hospice you will find them invaluable. Don't take no as an answer from anyone.

Attendance and carers allowances are useful if you have a local carers association theh will help.PSP association are a godsend.

Sorry to bombard you but I am the practical one!

Treasure every day, this ilness is hard for us all be it wives or family members , but i think especially hard when you are looking out for mum and dad.

Julie x

[judycope in reply to Julieandrog]

As it happens I work for the Carers Trust in Knowsley but none of our members are caring for someone with PSP. Statistically there would only be 3 or 4 people in the borough. I live in Sefton where there are likely to be more but I don't know where they are. Thanks for the tips.

[woodcrafters]

If you think you're scared. I was dxed with PSP three years ago, and I'm still in denial .. I keep hoping they come up with a magic pill.....It has progressed to the point where I can't focus on anything. Typing this is a bitch...

[Hidden in reply to woodcrafters]

Last August, a year and a half after Larry was diagnosed with PSP, he looked at me one morning and said “I’m not going to get better am I.” I told him no. I was taken aback that he had managed to avoid that thought for over a year. I can well understand you desire to avoid it.

[judycope in reply to Hidden]

Really difficult to tell how much my dad understands but don't want to ask because I think he'd be better not knowing

[enjoysalud in reply to Hidden]

Jeff166, I value the answer you gave your husband. I would want a truthful answer.

I believe it is difficult to be truthful about this horrible disease. Denial is so much more pleasant. I think most of us believe that optimism (HOPE) keeps us and our loved one going. It is healthier than "giving up", loss of hope. I believe, and practiced with my son, who is no longer with me, that when asked a direct question or even an indirect question, it was best to be truthful. Maybe because I want to be told truth.

As the disease progresses, I found it was helpful that our past discussions was based on reality/truth (as we knew it then).

I think that whenever we utter a response out loud, even when we know it's not true, we begin to believe it, and it distances us and our loved one from reality.

[judycope in reply to woodcrafters]

Obviously worse for you, I'm guessing you're younger than my dad, he's 84. With hind sight he's probably had this for about 5 years but was only diagnosed in January. The only choice seems to be to keep going so more power to your elbow (or typing finger)

[JR61 in reply to judycope]

My dad is 84 also and at times you would think he doesn’t hear or understand what is going on but if you are patient he surprises you. There is a delay in processing what you say or ask and sometimes it’s easier to form questions for yes or no answers. If he is anything like my dad he does know but can’t communicate what he is thinking and feeling and this is made more difficult as the facial clues and expressions have gone you have to be a detective to work it out an get on the right wavelength or word association. My dad also sometimes confuses yes and no which makes things interesting! JR61 x

[judycope in reply to JR61]

We have the yes no conundrum, we mostly laugh about it but it must be frustrating for him. He is a sport fanatic so I try to keep up a 'conversation' by asking questions about the game/match we are watching that only require a one word answer.

[Hidden]

I've wrote this to many times,welcome to a group no one wants to belong to. Wealth of information here.Ask away.

Dee in BC

[Cjhorseygirl]

Welcome Judycope..... I am also a daughter with a father suffering from PSP. Diagnosed around 4 years ago, dad was 79 in September. We are pretty advanced now, dad is bed bound and unable to do or say anything, with carers coming in three times a day. We didn't have carers until March, mum was trying to manage everything so as well as endorse everything everyone has said here, especially getting all your affairs in order and getting as much external support as possible. Be ready to get some help to come in for your mum, even if it's someone to sit with your dad for a couple of hours whilst she has a couple of hours shopping to going to have a coffee. I imagine she will be his full time carer, and it really is full time. She will need a break and she will need lots of support, some time to be normal. Also be prepared to explain what PSP is, there really isn't much knowledge about what it is and what is does.

Make lots of memories, my biggest regret is not having some video of dad, I just have photos, which are great, but I'll never hear his voice again.......

I didn't mean for this to to be so long and I really could go on, but this site is a fab source of information and everyone is amazingly supportive and knowledgeable.

Take care of you as well.

CJx

[LuisRodicioRodicio]

2017-11-04

Dear Judycope

PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms…....but, you can achieve a reasonable quality of life, even interesting despite how hard this disease is for everyone.

In few words these are my experiences on PSP disease hoping they will be useful :

My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).

In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear physical and psychic.

In principle, the limit I have set to send the patient to a nursing home is dementia or the need to apply specialized medical care.

The non-strictly medical parameters that the main caregiver must manage:

1) Avoid falls: transfer techniques, seat belt, wheelchairs with anti-bedsores cushion, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.

She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .

2) Prevent cold and flu (vaccine could be advisable) to avoid common pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Mediterranean diet insisting on fruits and vegetables. Ice cream are well tolerated.

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (Odd days), walk 200-300 m (even days), speech therapy exercises and exercises ocular muscles. After that he needs to rest at least 30 '.

Without any scientific basis, only observation of four nearby neurological diseases cases, I have the impression that a specific program of intense gymnastics can slow down the disease in an important way and is more effective the earlier the disease is detected.

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

6) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

She recently showed interest in a light TV show that he sees after dinner. Surprisingly this has significantly improved the relaxation and rest at night.

Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.

7) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.

To say yes or not she uses head movements.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.

Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ are a big help.

Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.

[sasmock]

Hi Judycope, my dad also has PSP. I agree with everything that's been said above. You really do have to seek out help, it doesn't come to you. Just ask about anything and everything on this group, I couldn't have managed without it. My dad was diagnosed March 2016 after at least 6 years of symptoms. He's 74, now bed bound and completely immobile, on a fully pureed diet. We get occasional yes or no's and the odd smile. He seems comfortable, but is reducing his food and fluid intake quite a lot, so we're not sure how long he'll be with us now. The last year has seen quite an acceleration in his symptoms (not helped by respite care home neglect and subsequent hospitalisation). He's now at home and he gets 4 visits a day. We've just heard that he'll also be getting one night sit weekly, so that should help my mum to get a mental break (she sleeps on the sofa next to his hospital bed downstairs). Without this group, I would have fallen victim to the horribly inadequate and inept CHC system and wouldn't have had the knowledge or confidence to fight for what my dad was entitled to. Getting help before you need it is one of the big lessons we've learned from all this!

[1941mary]

Dear Judy ..., my mum is 76 and suffers from PSP . She lives in Maghull Merseyside .... I live in the midlands . It is very difficult ... at the moment mum still lives on her own with carers going in Twice a day and my two brothers calling every day . I bring mum to me every other week to stay for a week and then the other times I get up to hers and stay for 3/4 day s. She has visitors and we try get her out every day to walk etc.

Just don’t know wha A going to happen in the future but mum loves her cosy home ... we have things in place but private care is so expensive ... one day at a time for us and spending as much time with her . Xxxx

[OldTimePete]

I have never posted on this site before, in spite of being a member for about 6 years. My wife, Maureen, was diagnosed at Kings, London 9 years ago. The major advice we were given was that a positive attitude and determined attempts to keep the brain active do seem to slow the progression. We visit friends and events all over the country and all our friends make a point of chatting to Maureen. Although things are getting gradually worse, we are sure that, without the social interaction with friends, things would have progressed more rapidly and also not have been so enjoyable. Take a leaf out of the new cancer ad. Life with PSP is still life. Chin up. Peter

[judycope in reply to OldTimePete]

I'm sure you're right and I know that's what they are doing themselves. When they move here that will all be a lot easier but at the moment mum is bearing the burden virtually alone as we are all so far away.

[Jafarrar]

Hope it is going well for you and your mom. There is so many nice people here to visit with on line. A lot of information. God bless you all. Jenny 😍