My dad suffers PSP what kinds of social/physical activity or group is available? I hate seeing him deteriorate in his recliner chair daily

[daughterinpain]

I want him to he able to engage in something and get involved. He is too young to let this get to him

[NannaB]

Hi, It is distressing watching someone deteriorate and it's good you want to make a difference. Do you have a hospice nearby? If so, you can be referred by the GP. My husband goes to the Hospice day centre once a week. He doesn't physically join in but gets a lot from listening to what is going on. He tries to sing along with entertainment, loves it when the patting dog is there and enjoys the little Christian service he attends ( not compulsory). A few weeks ago the speech therapist was here when I took a phone call. When it was over I went to my husband a told him who was on the phone and what was said. I was amazed when the speech therapist said that lots of full time carers rarely communicate with their loved ones, other than anything to do with their daily care. Your dad will know everything that goes on around him so tell him as much as you can about your day/week. It is hard work but I take my husband out at least twice during week and we go to church on Sunday where many people come and speak to him, without verbal response but he squeezes their hands, hard. I always make sure he is wearing aftershave then as he has so many kisses. If your mum is his carer, see if she can invite folk to the house and meet in the same room as your dad, speaking to him as well. This is a bit extreme I know, but since PSP I've been learning to play the ukulele. At first my husband came with me to the classes but when access became difficult, I asked if the group would come to my house. So now, twice a month, 14 folk with ukuleles turn up and play for 2 hours. Everyone greets my husband as they come in and he claps along with the music. At the end of each song, someone will say, thumbs up or thumbs down and he will let us know if he approves, often doing a funny little humming laugh if the thumbs go down. He rarely opens his eyes at all.

So I think the answer is to stimulate as much as possible, obviously letting him doze sometimes but when my husband appears to be asleep, he often isn't and is listening to everything.

Best wishes,

Nanna B

[daughterinpain in reply to NannaB]

Thanks for your response. I'll definitely communicate more. I have been a little distant. Combination of Self preservation and denial I think. But that is selfish and I know he wants company thanks again

[Hidden in reply to daughterinpain]

You have put into words what I feel daughterinpain I found it was my way of coping to distance myself then I thought this is selfish and I told him through my tears why I was like that and I try to talk to him more but it's not easy when you get absolutely no response to remember the one you love with all your heart is still in there

[Heady]

Hi Daughterpain,

You haven't said what stage your father is in. My husband can still move around and has been referred to a special gym class for people with Parkinson's and similar problems, like PSP. That starts next week. He did attend a class run by our Neuro

Physio, which he really enjoyed. For a man that was use to rock climbing, running, squash, hiking etc., etc., I didn't think he would. I think he just liked the company and the knowledge that he wasn't some sort of freak, that other people had problems as well! So I have great hope for these classes.

I am presuming that you are not your Fathers main carer. If you can, visit as much as possible or phone, I know that won't be easy, but S loves it when his daughter makes the effort to call (shame it wasn't more often, but that's another story!) yes, he might not be able to communicate to you much, but his hearing or understanding has not gone! I sure you can chat away for the both of you, telling him what you have been up to.

Another thing I have got my husband doing is painting by numbers. Not rocket science, I know, but it keeps him happy for hours and he really feels as if he is achieving something. Finding a really good book, if he can still read. S comes and goes with reading, found a couple recently and he has been totally absorbed!

One other thing, if I can presume and give you some advice. It's the little things that matter the most, any little thing that you can do, any small activity will go a long way to giving your Dad some pleasure. So don't be put off, thinking that what you can do is too small. That's the REAL help that you CAN give.

Love to you, keep in touch.

Heady

[daughterinpain in reply to Heady]

Thank you Heady. I'm not sure what stage he is at, he was diagnosed about 12 months ago. We started noticing some symptoms about 3 years ago. He is mobile, using a walking stick, but prefers to stay home in his chair and is becoming withdrawn. Your suggestions sound simple and perfect thank you for taking the time to share with me. I now have a couple of ideas and some direction. I believe he has been doing some physio type exercise at the hospice ... He is very proud and doesn't speak to me or open up of such things he lights up at the sight, sound and presence of my baby girl whom he adores. He was adamant his balance would return and he would be better. I hoped that would be enough. I think he's now come to the realisation after initial confusion and is trying to deal with the crappy fact it's not going too. As I am starting to come to terms with and face now too. Superman not bulletproof after all

[Hidden in reply to daughterinpain]

Trouble / good thing? is my husband has never excepted the fact and when he could still talk always said he was going to get better I think it is his way of coping cos I can't believe a clever man like him(Cambridge MA BA ) could really believe this!

[jillannf6]

hi daughter pain

yes anuyhtign which he can do would en good fo rhim

can he use a compute r - i blog on this site and on the Parkinson site and would be lost without the ideas suggested so plz accept ha the will find it difficult to adjust his life if he has been used to being able to do much -I find hat tpar tof athe illness v frustrating and tend ot fall ove r wheni n i do try and do anyth

do you have carers comng in ?- i have 2 great carers who know my problems and are good at makign me feel better about myself not worse

i have been on anti-deps for years and am v upbeat about

my situation

i go to a tai chi class once a week for balance

i sing sin a choir once a week for slowing me down

i go to Parkinson meetings every 2 weeks

get my hair done every week as i cannot brush or comb i t myself

and get to local rugbyhleague matcheds (Home ones)

iso my life coudl be a lot worse than it is

most peopel are grea twhen i do fall over outside thoughtful i am now using a wheelchair for outdoors so that cannot happen as much

and it watch the soaps on tv which i never used ot do

lol JIll

and i go to he local hospice one day a week organiserd by the

community matron - great for relaxation and identifying my probs in a non-htreatening way

[Sawa]

My husband was diagnosed in Nov 2011. He still uses a walker in th house with assistance but a wheelchair outside.

There aren't any groups out here we can join but we try to keep him active and involved. He goes to physiotherapy, occupational therapy and speech therapy twice a week. Also hydrotherapy which he loves. Definitely try to get him into a swimming pool. The water support means he can move more freely and independently and is great exercise for him, as well as being safe.

We also encourage him to play cards. He plays solitaire every morning which keeps his brain working and also forces him to move his head and eyes. I'll try and play Rummy with him about once a week.

Audio books are also great now that he can't see to read anymore. We download books onto his phone that he can listen to anywhere/anytime.

In terms of communication, we have a little ritual where every night once he's settled in bed, he has to give me 3 words/topics that we talk about. I find that he often tells me about things that happened during the day or that he's been thinking about. We have had some very brave conversations and also some very funny ones. Its often difficult to find the quiet time necessary to really talk during the day when there's so much going on, but at night when he's calm and settled and I'm not rushing around works for us.

Why don't you also try asking him what he would like to do. You may be surprised by his answer.

[Sky2]

Hi daughterinpain, I totally know how you feel, my dad has PSP and as you say it is horrible to see him deteriorate.

I've got him into swimming and he loves it. Dad can't walk anymore without the help from a walker and another person so he spends all his time in a wheelchair until I take him swimming.

It means he can walk with the water, of course I still need to balance him. He also swims on his back. I never allow him to put his head under. He can also hold onto the steps and lift his legs up and down like marching. I have some aqua tools that he can use to push and pull the water with him arms. I'm strong enough to get him in and out of the water via the steps but if you can find a pool that has a hoist even better. My dad also goes to the local swimming club on a Thursday evening called Tadpoles. It is for people with difficulties and they have a hoist to get people in and out. My dad lives in Sussex, where are you. I strongly recommend swimming if you can. All the best to you and your dad.

Esther

[Tz2388]

Also, most wellness centers and groups who center on Parkinson's will also welcome PSP patients. One we attend has Yoga, men's group, supervised exercise, speech, music,caregiver coffees, ect. And the state organization offers lots of opportunities.

[jillannf6]

HI

YOU ARE IN THE USA NTO THE UK I GUESS TZ2388?

COS THERE ARE NOT MANY FACILITIES IN TEH UK LIEK YOU SUGGEST: A WELLNESS CENT RE WOUDL BE A GREAT IDEA \

BUT IN PRACTICE IT WOULD CO STTOO MCUH TO PROVIDE HERE

LOL JILL