Frustrated

[Maxwell123]

I am new to this site ilive in scotland east kilbride i got diagnosed with psp on the 2 march 2016 all i can say is that the parkinsons nuse never contacts me as for the pspa they never contact you parkinsons uk never heard from them either o y prson i been in contact with is the s lt she says i dont need to see you again physio says ill see u i 6 mths physiciatrist wasnt interested fell into deep depresion for three days how do i get help

[easterncedar]

You have come to a good place! Hang on! I'm in the US, but I'm sure someone on your side of the Atlantic will reply soon and will have some advice for you. I'm glad you found us, and hope to hear more from you. I think we all have had trouble getting help from the medical community, but this site is great. Folks care and we help each other.

Scotland is wonderful. Some of my family are from near Edinburgh. Love and peace, Easterncedar

[NannaB]

I'm sorry you had to join this site but welcome you. Do you live with anyone who is helping you? Have you joined the PSPA and asked for their personal guide? They won't know about you until you contact them, although I do know someone reads this site. Unfortunately, although there will be a lot of professionals involved in your care, it will be you or your carer who will need to request an appointment when you need to see them. The SALT nurse gave my husband a sheet of exercises to help his speech but then we didn't need her again until swallowing became difficult and I rang her. The Parkinson nurse phones every 6 months to see how things are, the physiotherapist gave a sheet of exercises and said call if we needed her. Speak to your GP and get him to contact the occupational therapist as it will be they who, in the early stages, help the most. They will look at your home and provide AIDS to make you safer; hand rails, perching stool etc.

I do hope you get the help you want/need but be prepared for you or your carer to make lots of requests.

Best wishes

Nanna B

[cabbagecottage in reply to NannaB]

Nanna does PSP have are PSP support officers , like Parkinsons uk .

[NannaB in reply to cabbagecottage]

Hi Cabbagecottage, the Parkinson's nurse is the PSP support person where we are in Kent. I don't think there are enough people with PSP in the area to warrant a separate worker. She came to see us several times at the beginning. Now she rings every few months and has told me to call her if I need her. She is part of the neuro rehab team.

X

[Maxwell123 in reply to NannaB]

Parkinsons were im from never sees m or phones

[NannaB in reply to Maxwell123]

That's a shame Maxwell. Unfortunately, although she is there for us, I'm not sure what she could do if I did need her.

X

[cabbagecottage in reply to NannaB]

That's good though . I just wondered . The one I contacted , I e mailed her one day when I was desperate not having seen anyone to help for such a long time .

She e mailed me straight back and came to see me. She was so helpful and contacted OTs etc for me .

How are you and colin . The Parkinsons nurse called into see us earlier today . Went through johns Meds and to see how we were going on with us reducing his med .

Luckily not too bad , early days he had been on them so such a long time so will take time , but so far no adverse effects .

[NannaB in reply to cabbagecottage]

It's good when the professionals are helpful isn't it. We had a good day today. Colin went to the Hospice and someone gave music therapy. She played the keyboard and sang. When I arrived, one of the volunteers who had left the building, ran back in to tell me that Colin had managed to AAAH the tune to Amazing Grace. She said it brought tears to her eyes. When I got into the room, several of the nursing staff told me the same.

We always watch Songs of Praise together and he does the same but I was so pleased he did it where others can hear.

I hope the meds reduction goes OK.

Have a good evening.

X

[Doglinton in reply to NannaB]

How moving. Music gets through, doesn't it ?

x

[cabbagecottage in reply to NannaB]

Music is so good , it gives rhythm doesn't it .

That must have felt a tonic to you . It also showed the nurses that it's still the same colin even though he cannot always communicate very easily .

Johns drooling isn't good and he is lapping it up all the time so his lips are sort of freeZing . We are still using the glycoppyrate which I thought was helping but it didn't last for long . I am not giving up on it yet though

. Because when he is more responsive he can still speak a little I encourage him to sing .

Our favourite at the moment is the ABC song A your adorable etc .

I think it's a good exercise and help the memory .We also watch songs of praise together .

Have you watch the Andre rieu programmes . Lots of music of all sorts . I have recorded a few of his programmes and can play them back when he is more switched on , got to make the best when you can .

[NannaB in reply to cabbagecottage]

I haven't seen Andre Rieu. I'll check it out.

Have a good Saturday.

X

[cabbagecottage in reply to NannaB]

We have vain/cable tv and it's normally on sky arts ..

I go into it and check what's on during the week and if I see anything Suitable I will record it . It's something we can both enjoy together a little bit of normal . Lol

They often have certain days of concerts . We have watched a few lately , well John can't always watch them but he has had a few days when he hasn't been able to for a while .

I have recorded Andrea's Bocella in portafino and Joseph calleja in Malta . Frank Sinatra . Etc .

A bit of light classical , dance and fun and pop .

[steph02]

Pleas don't get depressed about this it just isn't worth it

I was diagnosed in 2014 after 7 years of atypical parkinsonisms. most of the help that you get generally isn't worth it (like exercises my bad shoulder) best to stay independent and 'don't let the bastards grind you down' stay optimistic after all there are different types of psp and you may well have one of the less aggressive kinds.

[abirke in reply to steph02]

Steph02. I didn't know there were different types of PSP! Does any respond to drugs?

AVB

[abirke]

Maxwell, I am so sorry to hear about your diagnosis. Keep talking to us at this site, you may come up with some solutions and or find medical people who understand psp and your needs. don't give up, stay strong. Be diligent in your medical needs

AVB

[Yvonneandgeorge]

Maxwell you need to contact social services, and get them involved, listen to what NannaB said, she has been traveling down this road for a long time. Steph not sure about the different types of PSP, I also have not heard of it, please give us a bit more of information about the different types. Yvonne x

[vlh4444 in reply to Yvonneandgeorge]

Yvonne and AVB

I think I read somewhere about the different types of PSP. I'm sure D has the classic or Richardson's type as his deterioration has been quite consistent and fairly rapid (three years from diagnosis so far). I think this type is called Richardson's after one of the people who first recognised the condition (Steele, Richardson and Olszewski). I can't remember where I first read about that - maybe even the PSPA information? Anyway this is an extract from the Wikipedia entry on PSP -

"cases are often split into two subgroups, PSP-Richardson, the classic type, and PSP-Parkinsonism, where a short-term response to levodopa can be obtained. Amantadine is also sometimes helpful. After a few years the Parkinsonian variant tends to take on Richardson features. Other variants have been described. Botox can be used to treat neck dystonia and blephrospasm, but this can aggravate dysphagia."

Hope George is OK after his hospital visit and you got the bladder/bowel problems sorted out for now.

Vicki x

[Christine47 in reply to vlh4444]

Here is a bit more from Dr. Golbe's psp-blog. "The new criteria recognize the various phenotypes of PSP. They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms.

The new criteria also delineate various “oligosymptomatic” or “prodromal” (the wording remains unsettled) forms, which may or may not develop into one of the diagnosable phenotypes. For example, there is now evidence that someone in the PSP age group with gradually progressive gait freezing for several years and a normal MRI, even without other abnormalities, will almost always prove to have PSP."

They are still trying to figure this disease out, it appears.

Christine

[vlh4444 in reply to Christine47]

Thank you Christine. This is interesting (and complicated!). As you say there still seems to be lots to do to discover more about PSP in all its forms.

V

[vlh4444]

Welcome to the site Maxwell. I do hope you get the help you need. I'm afraid you will have to fight for it! I am carer for my husband who was diagnosed in 2013. We are in England (Kent) and do get quite good help now but it is a full time job for me to liaise with everyone and make sure we have what we need. Do you have someone who can do that for you? Best advice is to contact the PSPA helpline initially and they will guide you about who to contact.

Vicki

[Maxwell123 in reply to vlh4444]

Thanks for ur words of encouragement

[loppylugs5]

so sorry Maxwell you have needed to come to us,but welcome.Nannab has said it all, so often I have read useful stuff from her.If you do not have the PSPA helpline number it is 0300 0110 122 they will listen and advise. I hope you have good friends and family.Px

[D0ttieL0ttie]

Dear Maxwell. I hope that you have support from a family member, friend or neighbour?

Please go back to your GP and ask for help. They should refer you to social services who should provide a case worker who can help with your finances, support groups, any aids that you might need and where to get the extra help that you need. If it will help print off the advice from this page or write it down and take it with you. Good Luck x

[formercarer]

Good morning Maxwell123 If you have been recently diagnosed it is possible that you are still reasonably able. I hope so anyway. The professionals are actually of very little use. It is your friends and family that you need on side now. Preparations need to be made that will allow you to remain safe, and will improve your quality of life going forward. None of us know how long we have. It is likely that you will outlive a friend or relation that has no cause to think his days are numbered.

Your diagnosis will have come as a terrible shock. Of course it will have tipped you into a dark place. I recall crying a river with mum when she was first diagnosed, but once those tears have flowed we found that they left a space for other, more positive emotions to dwell. I hope you have a few special people in your life, and I hope that you find a few more on this journey.It is a well trodden path. We are with you.

Audit your resources. Make the most of them. Get advise from a social worker or citizens advice to ensure that you claim every benefit you can. Find people that can make you laugh. Sit in the sunshine. x

[quickjel]

One small thing I'd add to the posts thus far is to contact a hospice, they are a fund of information on local services and will be able to help you find the support you need. I hope the thought of a hospice doesn't depress you further but they are not just for end of life support, my experience was wholly positive. Should you choose to contact them I hope your experience is similar.

Very best wishes, Jerry.

[Katiebow]

Again I would advocate the local hospice, they offer lots of services and advise. I have found them the most supportive as they take the holistic approach. I hope you soon get things n action as it is so important to get that support. I wish you well it is a scary journey but support from friends, family and medics can help you to cope. My husband was diagnosed in 2014 and we are getting lots of agencies involved, once the ball starts rolling you find you almost have too many proffessionals wanting to see you. Not saying they are all worth the time and fort but you have to take what you can and stay on the radar. Do you have a partner or carer or family to help with everything as quite a task to undertake on your own.

Kate x

[Doglinton]

I had to learn to be more assertive. I really wonder how many people get lost in the system. If in doubt ask for help. I am still learning to not cope too well. I am seen as "doing a good job so we'll wait until you ask"

Also, here in London, they all say they know about PSP but it becomes clear that they know little about living with it. You have to tell them.

love, Jean x

[Robbo1]

I am so sorry to hear of your condition. Sad to say, you have to be very proactive to get what you need. Phone calls, letters, faxes, bombard them with the stuff. Have you got anyone who can do it on your behalf? I do it for my husband. Your doctor is the first port of call. Do not let the depression get hold, get him/ her to see you. Keep on this site it will back you all the way, it will listen to you and try to help. Best of luck.X

[baird35]

Hi there I,m so sorry you,ve had so little support, We live in Ayrshire and My husband was misdiagnosed in 2012 with Parkinsons, then 3 yrs later found out it was PSP. My frst step was to Join this forum and since then he has been able to access info and I,ve phoned the helpline a few times for advice. It is a disease which is not known much to GP,s in this area. I would suggest you go back to your GP and ask for help. If you have a carer then take them with you. If not then GP needs to refer you to social work to be assessed for some support.. I hope you get some help

[jillannf6]

ghi maxwell

welcome to thhe site - i hope yo u ve got slower type =of psp as I'm pretty sure i have then u can do a lot for urself

lol jill

psP person in uk

xxxx

[Maxwell123 in reply to jillannf6]

He just told me i had parkisons plus didnt know there was a slow one i dont know

[jillannf6]

hi i seem tot have hhthe slower versio]n as i am still here 5 + yrs since dxs

neuro tended 2 agree w/ me

[jillannf6 in reply to jillannf6]

lol jill

xxx

[Maxwell123]

I have been refered to the hospice by my gp yesterday

[easterncedar in reply to Maxwell123]

That's a good step. I'm glad to hear you are going to have some support, Maxwell. The diagnosis is depressing, of course, and really knocked us over, but taking it day by day we manage to enjoy life still 10 years after the first symptoms and 5 post diagnosis, even if it's just sitting in the sun on a fine day. I hope you get the support you need so you can, too. We are here to listen, if you feel like talking. Love and peace, Easterncedar